Blueprint for Caregiving Blog

HOW TO TAK ABOUT BIG CHANGES

2012-02-25T09:05:00.002-08:00

Without a doubt, one of the biggest pressure points for elder caregivers is having a conversation about significant change with their loved one. It may be anything from giving up the car to changes in living arrangements to advance directives.
Here are some ideas for opening conversations on sensitive topics:
• Release your plans and ideas of what’s necessary. Try to create what might be called an empathy bridge so that you can see the issue through not only your perspective, but theirs as well.
• Dip often into your well of patience. For the most part, none of the decisions that these conversations point to have to be made immediately. Be willing to have a series of conversations on the subject over time.
• “What do you want?” is the key question for you to ask. For instance, if the issue is driving, the question is around your parent’s need for independence to achieve specific goals—getting to church, the market, doctors’ appointments, etc. Find a way to get them to articulate those goals so that from them you both can create a solution plan.
• Keep the conversation focused as much as possible on solutions. Try to avoid hard either/or proposals. Again using the driving example, the solutions could involve alternate forms of transportation—shuttles, taxis friends and family driving, not the complete loss of independence.
• Focus on safety. It should be the underlying motivator for you to suggest the change. It’s a crucial component, but be carefully compassionate about how you present it. It may sound accusatory if you recite the fender-benders and traffic tickets that have piled up recently. Take a tack that will allow them to discuss these safety issue without being defensive. Ask them how they rate their driving skills, and if they are in denial, perhaps then take a look at the dings in the car or the expenses tied to the tickets. Remember, the focus is on solutions so keep trying to get them to propose solutions to the particular problem, rather than you being the one who imposes them.
I know too well that these conversations aren’t always successful, but that’s where your patience and compassion come in. The issues usually don’t need to be settled from one conversation, so be willing to have a series of talks about the subject when time is not an issue. Most of all, come at the conversation from a perspective of empathy, and your chances for success will be much greater.
Blessings, Joanne

CAREGIVING FOR A NEIGHBOR

2012-02-18T09:14:00.001-08:00

Of the approximately 65 million Americans who are functioning as unpaid family caregivers, there are about nine percent (or almost six million) who are not a close relation of the person for whom they’re caring, nor are they spouses or life partners.
It’s unknown how many of these folks are neighbors of the cared-for persons. With numbers as large as these, it is reasonable to expect that neighbors are playing a role in caregiving.
In some cases they are the person closest at hand so distant family members come to rely on them to check in on mom or dad. According to Susan Greenberg, culture editor of Newsweek International, small communities and community organizations in larger towns and cities are beginning to organize for neighbors to be able to care for neighbors. Through a buddy system, a neighborhood watch, an aging-in-place collective, or a senior co-op, a variety of services can be provided.
And then there are the simple neighborly relationships that turn into caregiving as one neighbor ages and becomes frail. But having a non-family member provide care has its own issues.
Boundaries need to be established at the start of the caregiving. Robert Bornstein, a psychology professor at Adelphi University and author of books on caregiving said that without the limits on what a neighbor is willing to provide, a greater level of responsibility can be expected, which can lead to resentment on the part of the caregiving neighbor.
As an example, he noted that his neighbors teamed up to shovel an older resident’s driveway in the wake of a powerful east coast storm in 2010. When three more strong storms hit, the neighbors felt obligated to continue shoveling when they had four storms worth of their own shoveling to do.
He says the challenge to establishing boundaries is to be clear about what you can and can’t do. For instance, if your duties are simply to visit your neighbor twice a week, be clear with him or her what the time limit for the visit will be. What about driving to errands or medical appointments, or doing house repairs or cleaning? The best thing you can do for both of you, according to Bornstein is to be sure that everyone involved knows what they can rely on you for.
Another issue is resentment from family members when neighbors become involved in care. “The kids may not always appreciate it when neighbors step in,” he said even when the kids don’t seem willing to be of help to their parents.
On the plus side of these arrangements is the positive impact on the quality of life for the patient that regular contact with neighbors will provide. Regular social interactions can help maintain health and happiness.
Blessings, Joanne

SAFETY TIPS FOR IN-HOME CHEMO TREATMENTS

2012-02-11T10:49:00.000-08:00

Receiving chemotherapy as an outpatient is much more common than in the past and it’s much more convenient than getting treatment in a hospital or clinic. The problem for the cancer support team members (caregivers) is that these are extremely powerful chemicals and they must be handled very carefully.
Here are some precautions provided on www.caregiver.com through Cheryl Coppola, an oncology nurse at the University of Connecticut Health Center, in Farmington, CT:
• Patients may use the toilet as usual, but close the lid and flush twice. Be sure to wash hands with soap and water.
• If a bedpan, commode or urinal is used, the caregiver should wear gloves when emptying it. Two pairs of latex or nitrile gloves are recommended. Nitrile gloves are disposable like latex and are made of synthetic rubber. Rinse it well with water and wash with soap and water at least once per day. The same applies to basins used for vomiting.
• Wash clothing and linen as usual unless it’s soiled with chemotherapy or body fluids. Use gloves and immediately put the soiled laundry in the washer separate from other laundry. If you don’t have a washer, put laundry in a sealed plastic bag until it can be washed.
• If chemotherapy is spilled on skin, irritation or rash may occur. Wash the area thoroughly with soap and water. If redness lasts more than an hour, call a doctor. You can avoid contact with skin by wearing gloves when handling chemotherapy, equipment or wastes.
• For spills on the floor or in the home environment (not on your skin), your home health agency will supply you with a chemotherapy spill kit. Follow the instructions on the box exactly.
• All cartridges, bags, bottles or tubing that contains chemotherapy must be disposed of in the supplied needle box.
• Use gloves when handling all oral chemotherapy doses.
• Keep all chemotherapy drugs, equipment, wastes, needle boxes, etc. out of reach of children.
Whether your loved one is receiving chemo at home or in a clinic, keep in mind that the side effects can be extreme. Plan ahead as best you can to manage the digestive reactions that can cause you patient anxiety and humiliation.
Blessings, Joanne

THE REAL DANGER OF BURN OUT

2012-02-04T08:17:00.000-08:00

We’ve all read the stories: the elderly couple found shot to death in their home, a case ruled as murder/suicide by authorities.
A middle-aged man who becomes so distraught over his mother’s pending death that he shoots and wounds the doctor, then kills her and himself.
In your pre-caregiving days did you wonder that anyone could do such things?
In your time now as a caregiver, can you understand these acts more clearly?
It all comes down to self-care of the caregiver to limit the stress of caring for someone who’s suffering so greatly or whose illness makes them impossibly difficult to deal with.
That’s why caregiving experts like me preach endlessly on the need for self-care.
Keeping out of these kinds of headlines boils down to the caregiver staying strong and healthy in mind, body and spirit.
Failure to care for yourself is a condition that I call Caregiver Mentality. It is the denial of your own needs in order to focus obsessively on your loved one’s care. It’s an easy trap to fall into. I’ve done it myself more than once.
The cost to the caregiver of this lack of self-compassion is a condition known as burn out. It’s a total crash of the caregiver’s health and well-being leading to dangerously deep depression and life-threatening illness. It can also lead caregivers to those extreme steps that make the headlines.
Take care of yourself! Be as compassionate toward you as you are toward the person for whom you are caring. Ask for help and don’t take no for an answer. Get at least 30 minutes of exercise everyday. Find someone to talk with about your strong feelings, even if it’s on-line or in the pages of your personal journal. Eat well. Take time off.
You can survive the stress of caregiving, but only if you care for yourself as you’re giving care.
Blessings, Joanne

FALLS AND FRACTURES

2012-01-28T07:06:00.000-08:00

During the winter months, one hazard of caregiving in colder climates is the increased risk of falls leading to fractures, especially hip fractures. Older women who break a hip may be five times more likely to die within a year than their healthy-hipped peers, according to new research.
A study of nearly 10,000 women done by Kaiser Permanente found that for women ages 65-69, a hip fracture boosts the risk of dying within a year by five times. It doubles the risk of death for women ages 70-79. The question becomes: Why does this increased death risk exist?
Erin LeBlanc, MD, MPH, the lead author of the study offered some insight into why breaking a hip is so dangerous in a September, 2011 article from agingcare.com. According to her, the risk lies in the forced immobility caused by a fracture.
"Any time you're immobile, you're more at risk for infections, and blood clotting. Your nutrition is going to go down because you're not feeling well, and that puts the body in a weaker spot to be able to fight infections or fight any sort of illness that might come on," she says.
Dr. LeBlanc said she hopes that the study’s findings will encourage doctors and their elderly patients to be more proactive with regards to preventing hip fractures and, if that fails, improving post-fracture care.
There are plenty of places to get information about fall prevention. A good place to start is www.learnnottofall.com, a non-profit website. Other sources are the Home Safety Checklist of the non-profit organization, Rebuilding Together, in collaboration with the U.S. Administration on Aging (www.rebuildingtogether.org/section/initiatives/safehomes), and the Preventing Falls and Fractures list from the National Institute on Aging (www.nia.nih.gov/health/publication/falls-and-fractures).
Fall prevention looks at the lifestyle of the patient as well as the conditions of his or her home and surroundings. Things such as overall mobility, medications and eating habits can all contribute to falls. Even eye glass prescriptions can be at fault, so be sure to keep your loved one’s up to date.
Two chapters in my audio books, Blueprint for Elder Caregiving and Blueprint for Dementia Caregiving are dedicated to the causes and prevention of falls. Those audio books, or their data CD counterparts, are available at www.blueprintforcaregiving.com.
Finally, there are many websites which offer fall monitoring and prevention equipment. Go to your favorite search engine and type in “fall prevention” and you’ll have a long list to choose from.
Falls generally mean fractures in elderly people, so be pro-active in doing what you can to prevent your loved one from falling.
Blessings, Joanne

MORE WINTER HAZARDS FOR SENIORS

2012-01-21T10:19:00.001-08:00

Aside from hypothermia, (see blog post of Nov. 21, 2011 Prepare for Caregiving in Cold Weather) and the risk of falls on slick sidewalks, caring for the elderly during the winter months brings another concern—vitamin D deficiency.
This deficiency can lead to a seasonal depression known as Seasonal Affective Disorder or SAD. The acronym is a good descriptor of the problem. Lack of sunshine in those gray winter months can lead to a vitamin D deficiency and that can lead to this seasonal depression. The National Institutes of Health report that it most often affects elderly women living in the northern tier of states where sunshine is less frequent in the winter. However, SAD can occur during other seasons, too, so be wary for the signs of depression in your loved one.
The other issue with an insufficient supply of vitamin D is brittle bones. D helps our bodies absorb calcium, which is in short supply in elderly bodies. Those brittle bones are more prone to fracture (more about this issue next week), so keeping up your loved one’s calcium and D intake is very important.
The good news is that vitamin D deficiency very easy to treat, but you, as an elder caregiver, need to be aware of your loved one’s mood and be able to detect this problem before it becomes too serious.
As the weather gradually gets colder keeping people indoors more often, and the days shorten, people affected by SAD will generally begin to feel the symptoms of depression, including an overall sense of sadness, a loss of energy, an decreased appetite, along with lethargy and tiredness. If you spot these symptoms in your loved one, be sure to have him or her checked by their doctor.
Getting more vitamin D into your loved one may be as simple as providing them with a supplement. Many calcium supplements come with vitamin D included. D can be hard on the digestive system, so you may need to consult the doctor about a prescription form that’s easier to take and won’t interfere with other medications.
Exposure to sunshine is another easy way to get vitamin D. Even 10 minutes a day exposure—without use of sun screen—will increase the levels of D in a person.
Finally, there are light boxes, which can cost up to $200 each. These specialized light sources provide an alternative to sunshine and don’t have the UV rays that can damage skin or eyes.
Sometimes caregiving revolves around your ability to see problems as they develop and head them off before disaster strikes. Vitamin D deficiency is a good example, and something to pay special attention to during the winter months.
Blessings, Joanne

MORE NEW LESSONS

2012-01-14T08:34:00.001-08:00

Boy, am I ever getting a crash course in modern medical “stuff!” I want to tip my hat to all you caregivers who deal with these issues daily. It’s been a good reminder about how caregiver stress can get started and build up.
I’ve been having heart palpitations for the past month and during that time have been wending my way through the medical system. Here are some of the new lessons I’ve learned:
• Don’t ever walk away from a medical test for yourself--or the loved one for whom you’re caring--without a copy of the results in hand. This lesson has come home in regard to the heart thing, and in relation to last year’s mammogram. I had one done this year in 3D since this technology provides a better view of what may—or hopefully may not—be happening in my breasts. With a mom and sister who died of breast cancer, this is pretty important. The problem is that I can’t get my hands on last year’s mammogram. The new radiology group wants to compare the two. I’m going to be sure to get copies of both, eventually, but this year’s for sure. As a warning, the heart group was unable to retrieve the results of two weeks of wearing a heart monitor. The excuse was they weren’t familiar with the technology. One wonders why they’d try to use it.
• Take time at the medical appointment to read the material provided about upcoming tests and procedures while you’re still in the office so you can ask questions. When the cardiologist said he wanted to do a stress test, I assumed he meant the exercise one on a treadmill. Nothing was explained, but I was given a sheet that listed the name of the test and it isn’t the old treadmill one. This one involves being injected with radioactive isotopes and having my heart “chemically” stressed. It’s my fault for assuming I knew what they were going to do, but it is also the cardiology group’s fault in that they didn’t explain anything. The “information sheet” they provided simply lists what I’m supposed to do and not do prior to the test. There’s no information about the test itself. It took quite a bit of effor ton my part to find someone within the heart group who was willing to explain it to me. Thank God for WebMD.com! And that leads me to the next lesson…
• A PS to the stress test is that I advocated for myself because I didn’t like the idea of the chemical stressing of my already palpitating heart. The technician assured me that it would be fine, but he is a technician and not a physician. After some consultation outside of my hearing I was “allowed” to have the treadmill test.
• Learn the phone and website system for your doctors. I’ve got yet another new physician (for a second opinion on the heart thing) who had me download, print out and bring all the patient information forms to the initial appointment. I had to wonder what happens to patients who don’t have Internet access. The heart group has a byzantine phone system, but I finally figured out there’s one number I can punch and get a live human being to talk to. I don’t know how widespread use of web-based forms and automated appointment booking, etc. has become, but it certainly makes contacting your doctor—or you loved one’s—that much more difficult because it’s so impersonal. If you’ve got a computer, some practices have set up email contact between patients and physicians. The second doc uses NextMD.
• The cardiologist diagnosed atrial fibrillation and prescribed two drugs. One cost $400 for 30 days and had some very unpleasant side effect, neither of which were discussed with me, even though I asked about side effects. When I finally got him on the phone a week later he said that my side effects were rare (not according to the pharmacist) and that he could not know what my insurance would pay so there was no point in discussing price of any drugs. The pharmacist can quote me pre-insurance prices of any drug. Why can’t the doc? Obviously if I’m going to continue with this doctor (which I’m not) I need to learn to question him relentlessly about everything.
I’m old enough to remember Dr. Purdy who actually made house calls when mom decided we were too sick to make it to the doctor’s office. I know those days are long gone, unless we want to spend thousands on a concierge medical practice. However, even though I can cope with technology-based medical practices, I don’t have to like them. I’m working as hard as I can to not to become too stressed about this stuff while dealing with a health concern. Kudos to you caregivers who live in this world all the time. I’d forgotten just how stressful it can be.
Blessings, Joanne

GOING IN CIRCLES ON PURPOSE

2012-01-07T14:09:00.001-08:00

WebMD is a really useful and helpful website for getting information on a wide range of medical topics. But the publisher of the site also put out a bi-monthly magazine that is available only in doctors’ offices.
Like the website, it’s full of useful information, like the article that ran in the most recent edition on using labyrinths for meditation and relaxation.
Labyrinths date to pre-history and were used actively as part of pagan worship and medieval spiritual practices. They fell out of use for centuries, but in the past three decades have come back into use. According to WebMD, more than 100 hospitals, hospices and health care facilities in this country have walkable labyrinths.
I think use of them is particularly helpful for caregivers—and their patients—as a tool for relaxation through meditation.
The idea is simple enough, you walk the concentric circles that lead to the center of the labyrinth and then you retrace your steps. There’s no stress in the process itself because a labyrinth is not a maze that you have to find a way through. It’s merely concentric circles leading to the core from which you return by the way you entered.
If you have access to a labyrinth—check churches or parks as well as care facilities—here are some tips for making your journey one of both body and soul:
• Before entering, consider a question, voice a short prayer, or bring an image to mind that you can hold as you walk.
• While walking in, be mindful of your body—pay attention to your steps, your breathing, and whether you are holding tension in your body.
• When you reach the center, stand or sit for a few moments. Breathe deeply and easily. Close your eyes or look downward. Check in with yourself to register your feelings.
• While walking back, re-visit the question, prayer or image you began with.
• After walking, journal to uncover what the process has brought up for you. What were your feelings during the process? Has anything changed, physically, emotionally or spiritually for you?
Even if you don’t have access to a formal labyrinth, finding a circular path to follow can provide you with the same relaxation resource. Relaxation through meditation in this way is one of the ways in which you can help your body deal with the effects of caregiver stress. Who knew going in circles on purpose could be good for you?
Blessings, Joanne

A NEW YEAR'S QUESTION

2011-12-31T08:53:00.001-08:00

Happy New Year to all of you caregivers and the loved ones for whom you are caring!
The coming year will bring more insights and surprises as you continue your journey together, so it seems like a good time to pause for a moment of contemplation as the year begins.
For most of us that means figuring out one or more resolutions to launch the year—new behaviors leading to hoped-for better habits to incorporate into our lives in 2012.
That’s OK, but for me, those resolutions rarely take hold. They’re made, practiced and evaporate in a short period, leaving a faint whiff of guilt in their wake rather than the new behavior.
I’ve got a better proposal for you to think about as the new year commences: come up with a question.
The question is something you promise to think about throughout the coming year with the goal of reaching an answer that can ultimately bring about a change in your life.
For instance, rather than resolve to lose 15 pounds, you might decide to ask yourself a question such as “Why do I snack between meals when I’m not hungry?” or “Why do I always order French fries instead of a side salad?” Contemplating the behavior that fuels the need for change can be a lot more productive long term than promising to lose weight. If you get to the heart of the reason you eat the way that you do, then changing that behavior comes more easily.
You may want to make the subject of your question something around your caregiving: “What is it that keeps me angry all the time?” “Why do I feel threatened when mom can’t remember things?” There may not be specific lifestyle changes tied to the answers as you realize them, but what you can get out of thinking about questions like these is a new attitude in your caregiving.
You may want to take on large, existential or spiritual questions. Those are worth at least a year’s contemplation, if not more.
Whatever topic or question you choose, be sure to journal as you ponder. Thinking about your question will do you a lot more good if you can chart your progress, rather than simply arriving at your question-based destination with a pat answer in hand. The joy of this is the process as well as the end point.
Blessings, Joanne

GREETINGS ON CHRISTMAS EVE

2011-12-24T09:09:00.000-08:00

Because it's Christmas Eve, I'm going to shift from a caregiving topic to one of a spiritual nature. We'll get back to figuring out the ins and outs of caregiving next week.
While it's nice to contemplate the tree and the gifts, the good family memories (not the bad ones) of the holidays, and dream of a white Christmas, that is too far off the mark of what we celebrate tonight and tomorrow.
In my view, the celebration is about the amazing power of love:
God created us, but did not leave us alone. Prophets were sent to keep us on track, and when that didn't work, a new plan was put in motion. God could have walked away from the whole human-created mess at that point, but instead distilled himself down, way down, into human form to be with us to set us on the right path. That is an act of love so deep, so amazing that it leaves me breathless. We certainly hadn't earned a love like that, but we are all constantly and continuously recipients of it. I can only look at it with awe and wonder and offer my thanks, which is pretty puny by comparison.
Now that I think about it, it's the same kind of love that keeps all of you working as caregivers. What wondrous love indeed!
May your Christmas, and the coming year, be blessed.
Joanne

SELF-CARE WORDS OF WISDOM

2011-12-17T08:18:00.000-08:00

One of the things I preach regularly to caregivers is the importance of self-care. That’s based on my personal experience as well as research on the subject.
If that’s not enough to make you start to exercise, eat well and take time off, perhaps this testimonial from Dave Balch, published in the November-December 2011 WebMD Magazine will get you to shift your thinking. While his caregiving centered on cancer, what he has to say applies to all caregivers.
When Dave’s wife Chris, was diagnosed with breast cancer, he plunged into the role of caregiver—researching her medical options on-line, attending all her medical appointments with her, and providing the care she needed through multiple surgeries, radiation and chemo therapy treatments.
The one thing he didn’t do was take care of his own health so that he could remain strong to care for Chris. Here’s what he says:
“After about five years I did develop burnout—what some people call ‘compassion fatigue.’ I really needed to get out of the house, away from talking and thinking so much about cancer. All of that, combined with financial problems, was just too much.
“Eventually I joined an online support group, which was very helpful. And I decided to write a book to help other caregivers deal with what can be an exhausting, stressful, isolating job…
“I’ve learned so much in the course of this journey about the importance of humor (no, cancer isn’t funny, but some of the things that happen because of cancer make you laugh out loud), of talking and listening, and of dealing with the weird things people say in these situations.”
I can’t say I like the phrase “compassion fatigue” because that makes caregiver burnout sound like something rather mild, the kind of thing you could handle by taking an aspirin and laying down for a couple of hours. Burnout is a serious, serious threat to the caregiver’s health and well-being and because of that, it’s a threat to the patient, too.
Learn from Dave and start taking care of yourself before you hit burnout. One way to do that is to ask yourself the questions: “If I become ill, who will care for my loved one?”
Blessings, Joanne

A PERSONAL ER REMINDER

2011-12-10T08:52:00.000-08:00

Recently, I had a lesson in practicing what I preach when I got to spend three hours or so in my local hospital’ emergency room…as a patient. I was awakened in the middle of the night with heart palpitations, which, of course, stopped the minute they hooked me up for an EKG. After three hours, they sent me home saying there was no real threat to my health, but also recommending a visit with the local arrhythmia specialist.
So, as the late great basketball broadcaster Chick Hearn used to say, “No harm, no foul.” But there were some reminders that I need to do what I urge all of you to do. So here’s the list of those reminders:
Keep a file of important medical and personal information and take it with you on trips to the hospital. Whether scheduled surgeries, out-patient procedures or emergency room runs, you need to know about insurance, Social Security and a host of other details that you may not be able to recall accurately. I couldn’t come up with an accurate Social for myself. OK, it was 1 a.m., but still, if I’d had my file with me, I could have just handed it to the in-take clerk and not had to think “is it a 3 or a 6?”
Have an ability to take notes. This could be contained in your file, or you could just grab a notebook and pen on your way out the door. My husband drove me to the hospital and was willing to hang out, but it was the middle of the night, the palpitations had stopped and we had no idea when the busy doc was going to talk to me, so I sent him home. Again, my alertness wasn’t high on the charts due to lack of sleep, so I had to work my brain especially hard to track what he was telling me. I didn’t ask some key questions about diet and exercise. I’m grateful that he sent me home with a few very general instructions, but with the specialist’s name and contact information included.
Dress for the cold. Unless there’s a heat wave going on that’s affected the air conditioning, most hospitals in general, and ERs in particular, are rather cool places. Flagging down a nurse or aide to get a blanket took some doing in the bustle of the ER where patients kept arriving regularly. Warm socks and an extra sweater, or your own blanket are good to have on hand.
The other piece of this visit that I found fascinating were the four brochures I was sent home with, covering my rights, my responsibilities, privacy laws and general hospital information. The hospital wants to be sure I understand all of this admittedly important information. But a big brochure that’s crammed with page after page filled with print given to a groggy patient or stressed-out caregiver seems counter-productive.
I hope that this holiday season will see us all comfortably outside the doors of hospitals and their emergency rooms. But if you do have to make the trip, please keep these little reminders in mind. They may make your time—and your patient’s—less stressed.
Blessings, Joanne

THE HOLIDAYS ARE COMING! THE HOLIDAYS ARE COMING!

2011-12-03T08:29:00.000-08:00

It’s December and the holidays are upon us. How prepared are you to add more responsibilities and things to do to your existing load of home, family and caregiving?
Self-care is a great gift to give yourself at this time of the year, so here are some ideas to help you navigate the holidays without killing yourself or your family traditions:
Food choices: The holidays don’t have to be the end of your healthy eating patterns. If you’re not engaging in healthy eating, this is actually a great time to start.
• Go for the raw veggies and dip or even the roasted nuts. Avoid the cheese and crackers, guacamole and tortilla strips and those creamy dips.
• If you want to drink at a party, alternate an alcohol drink with a glass of water, starting with the water. It will allow you to be more sober and save on those empty alcohol calories.
• Eat a healthy snack at home before heading to a party. You’ll be less likely to over-eat if you’re not hungry when you get there.
• Eat smaller portions. You can have a little of everything, just eat less of all of it. You’ll avoid that horrid stuffed feeling.
• Skip a few of the higher calorie items like gravy on the potatoes, butter on the bread, whipped cream or ice cream with the pie.
Family traditions: Accept the fact that your life and that of your loved one has changed, so release the pressure to do the holidays the way the family always has. Here are some ideas to consider.
• Take honest stock of the circumstances—what can your loved do and not do? Structure a holiday plan that takes those circumstances into account.
For example, if your mom is suffering from Parkinson’s and has lost the ability to communicate clearly, then expecting her to read “The Night Before Christmas” as she always has is going to be a disaster. Instead, have other family members—how about the grandkids?—take turns reading or reciting verses of the poem to your mom.
• Having your loved one help in the kitchen for holiday meals has to be assessed against her or his ability to do so. For example, you may be able to involve a dementia patient with a repetitive task, but one that keeps his or her safety as a priority. Perhaps they shouldn’t be chopping vegetables, but maybe they can help fold napkins and set the table.
• Someone who is ill, injured or suffering from a chronic condition doesn’t have a lot of stamina, so another way to do the holidays differently is to cut back on the number and duration of the parties. You did it when you had small children in order to keep your toddlers from becoming exhausted and susceptible to tantrums, or the first germs they encountered. Keep that same focus on the need for rest and healthful meals, and it will help you set limits that will support your loved one so they can enjoy the celebrations they attend.
• If you are caring for a dementia patient, you are no doubt aware that crowds, even if they are familiar people, will cause anxiety and disorientation. Hold onto that understanding during the holidays. Your loved one may not be able to handle more than two or three people at a time, so don’t invite the whole extended family to come all at one time. Instead, host a series of short-duration events for two or three people at a time.
Gift giving: Especially if the person for whom you’re caring is house-bound, you may want to re-think how you do holiday gift-giving to provide alternatives to the usual stress-filled round of shopping and wrapping. Aside from using cyberspace to manage the shopping, here are a couple of new ideas:
• Instead of each member of the family giving a gift to every other member, why not do a single gift exchange? Each person brings one gift bought for an agreed-upon amount or a White Elephant. There are lots of fun ways to figure out who gives what gift to whom.
• Memory gifts can be more precious than the most expensive trinket. Have family members bring photos and mementos of favorite times, like vacations and holiday seasons. Take turns sharing those memories, which can be a great joy.
• A good money-saving idea in our recessionary economy is to have everyone bring something they’ve made. Crafts, art, or food to share provide wonderful expressions of affection.
The holidays hold potential for creating more memories to add to those you already have. But they can also become occasions for further stress, which only degrades your health and well-being. It’s up to you to decide how you choose to celebrate them.
Keep in mind that your other family members, or even the loved one for whom you’re caring, may not be as willing to make these changes as you are. Start small and you will probably find that everyone will appreciate the reduced holiday stress.
Blessings, Joanne

TRACKING VITAL INFORMATION

2011-11-26T08:02:00.001-08:00

Whether you create your own file or find one on-line, one crucial responsibility of a caregiver is tracking your loved one’s medical information. Yes, it takes time and effort to assemble all the lists of drugs, insurance and Medicare, doctors, symptoms and medical history. Add to that information all the bits and pieces of information such as Social Security, possible future funeral pans, military discharge papers and on and on. It’s a big task, but a hugely important one.
Here’s a story from a caregiver, Kathy Porter, who suddenly had to confront the reality of why this kind of information file is so important. She told her story this February in Caregiver.com’s caregiving advice forum:
“When Mom broke her hip, I called an ambulance. When it arrived, I confidently recited Mom’s Medicare number. When asked what medications she took, I pulled out our basket of pill bottles. At the hospital, the questions got more complicated. Still, I knew enough to fill out the forms.
“Strangely, as I did the paperwork, I began to feel sharp pain in my lower belly. I was nauseous and feverish. I did not know it then, but I would be joining Mom in the hospital the next day with an emergency of my own – one requiring surgery and a six-day hospital stay.
“I realized that my mom’s care was far too dependent on facts held only in my head. As primary caregiver, I managed the insurance, filled prescriptions and kept doctors’ names and phone numbers in my password-protected data organizer.
“I knew I should organize Mom’s records, but I didn’t know how. As we both recovered, I looked for an easy way to keep her health information. I especially wanted an easy way to share it with others in case I am not around.”
A medical journal and/or a life documents file, such as the ones I offer on my web site, www.blueprintforcaregiving.com, or one you make or acquire on your own will enable you to track the information you need. It also will allow you to have it ready at hand if someone else needs to step in to assume your responsibilities for any reason.
Yes, it takes time to assemble. If you need motivation, keep Kathy’s experience in mind. Once completed, it’s an accomplishment that will benefit both you and your loved one.
Blessings, Joanne

GET YOUR DAILY POSTS AT FACEBOOK

2011-11-23T13:55:00.000-08:00

For those of you who want information to augment my weekly posts here, you can get more at Blueprint for Caregiving on Facebook. I post there Monday through Saturday. On Mondays, Wednesdays, Fridays and Saturdays I post caregiver-oriented information. Tuesdays has some caregiving info, and Thursdays is just-for-fun stuff. In addition, I put out a free email newsletter for caregivers on the 15th of the month. If you'd like more support for your caregiving, you can subscribe by sending an email to caregivingcoach@ymail.com.
Blessings, Joanne

PREPARE FOR CAREGIVING IN COLD WEATHER

2011-11-21T10:44:00.001-08:00

A few months ago, I posted an article on elder caregiving during extreme heat. Fortunately, those days are past us, but now it’s time to consider how you will care for your elderly loved one during cold weather.
According to the Elder Care On-line newsletter from last month, loss of body heat, or hypothermia can be exacerbated in the elderly due to a variety of causes, including changes in the way aging people perceive cold, skin diseases, inactivity or immobility, medications (such as anti-depressants) or alcohol abuse. Low body temperature can lead to slowed speech and reflexes, high blood pressure, or depressed breathing.
This list of symptoms of hypothermia may be difficult to detect if your loved one is already impaired by a chronic condition. Check with his or her doctor if you’re unsure how hypothermia symptoms will show up in your loved one.
Here are some ideas to consider as we move into the cold-weather time of year:
• Place a reliable thermometer in your elder's room and don't let the temperature fall below a comfortable level. A good minimum temperature is 65 degrees F.
• Make sure your loved one has warm socks (with anti-skid soles), gloves and a hat (even indoors);
• If your loved one is living in his or her own home, be sure to check that the windows and doors are properly weatherproofed to eliminate drafts;
• Keep his or her room warm with a small electric or ceramic space heater;
• Heating an entire house or apartment can be expensive. Heat just one or two rooms and encourage your loved one to stay in the heated area;
• Encourage exercise, even if it’s just walking around the house;
• Make sure your loved one is eating properly since inadequate caloric intake is a key risk factor for low body temperature.
Even mild hypothermia is considered a serious condition in an elderly person and might require hospitalization. If you suspect that your elder is experiencing hypothermia, call for emergency help and slowly rewarm your elder with blankets, socks, hat and gloves.
Good caregiving is equal parts preparation and response. This is one area in which you can perhaps spare you and your loved one the need to respond to a crisis by preparing for the cold weather in advance.
Blessings, Joanne

CARE MANAGEMENT AND PALLIATIVE CARE

2011-11-12T18:02:00.001-08:00

Recently, I’ve encountered two people who have “discovered” palliative care, which for many years has been associated strictly with end-of-life. The news to these friends and family members is that its scope has enlarged considerably and it is now focused on care and pain management, rather than being limited to dealing with patients who are dying.
According to the National Palliative Care Research Center, it “focuses on relieving suffering and achieving the best possible quality of life for patients and caregivers.” This care is appropriate for patients in all disease stages, including those undergoing treatment for curable illnesses and those living with chronic diseases.
Palliative medicine utilizes a multidisciplinary approach to patient care, relying on input from physicians, pharmacists, nurses, chaplains, social workers, psychologists, and other allied health professionals in formulating a plan of care to relieve suffering in all areas of a patient's life. This multidisciplinary approach allows the palliative care team to develop a care management plan to address physical, emotional, spiritual, and social concerns.
Access to palliative care can provide relief for the caregiver in juggling the multiple demands of a wide-ranging medical team whose members may not communicate with one another.
For example, my cousin is being treated for an aggressive cancer. The side effects of the treatment are extreme. His wife has exhausted herself trying to help him stay pain free, based on input from his oncologist. By utilizing the cancer clinic’s palliative care team, they have been able to address the pain issue, along with his problems in eating and need for time to recover a bit between treatments.
In the other case, my friend’s elderly father, an Alzheimer’s patient, is living in a care facility, but is being treated for diabetes as well as dementia. Coordinating those medications among the facility’s staff members, along with trips to doctors’ offices and the pharmacy, hasn’t always worked well. By using a palliative care team, there is now one overall management of his illnesses and medications.
Do you have access to a palliative care team? Check with your loved one’s medical team, or the clinic or hospital where he or she receives treatment. Organizations such as the National Hospice and Palliative Care Organization (www.nhpco.org) can provide information on local services in your area. And be sure to read this month’s recommendation at the bottom of this newsletter.
Blessings,
Joanne

CONVERSATION ON THE THRESHOLD

2011-11-06T17:46:00.000-08:00

Caregiving on the threshold between life and death has a different quality than when we’re in it for the long run, or even the short-term with the belief that our loved one will fully recover.
One of the great gifts of caregiving at the end of life is the opportunity for reconciliation of old wounds given and suffered by both the caregiver and the patient. I call this opportunity, “the goodbye conversation.” Here it is:
1) Here's how I'll always remember you...Another way to say this is "This is what I'll always remember about you..."
2) Thank you for...
3. I forgive you... This one doesn't need to be a list of wrongs. A general statement of forgiveness is really all that it needs to be. Sometimes, depending on the issues involved, it's better to put #4 ahead of this one.
4. Will you forgive me for...?
5) I love you
6) Good-bye.
Sometimes there's a need for assurance that the family will be OK without the dying person. That was certainly the case with my dad.
This isn't meant to be a sit-down-with-list-in-hand type of conversation. Just let it flow where and how it will, but when an opening comes to talk about one of these points, take a deep breath and plunge in. There is no need for any of these to be a big, dramatic moment. Small and quiet works very well. It will probably be difficult to take in an apology from your loved one. If you can, accept it, thank him or her for it, and if possible offer up an affirmation.
A wise pastor I know says loss changes the texture of our lives. But he also says that it’s not loss alone that changes us. Love does, too. The gift of love and relationship—the willingness to find ways to reconcile at the end of life—changes our lives for the better because it changes the way we think about ourselves. And that holds true for the dying one, too. You are offering them the opportunity to change the ways in which they think about themselves in the brief time that’s left to them. That gift of love is far more powerful than wounds either of you caused at an earlier time in your lives.
Blessings, Joanne

YOUR FIRST FIVE CAREGIVING STEPS

2011-10-29T07:29:00.000-07:00

November is National Family Caregiving Month. And it’s been more than 18 months since I posted this article. Caregiving is a fluid enterprise with folks coming into it and going out. The information remains valid for those of you who are new to caregiving, so I’ve decided to post it again.

This morning I got a call from a dear friend who told me her 44-year-old daughter has just been diagnosed with colon cancer. In all her anguish, the question that kept coming through was “What do I need to know, right now?”
No matter what the disease or injury, I think there are a few immediate steps that all caregivers need to take, the "first five steps" of your caregiving journey.
1) Always have a second person at every medical appointment. There is so much information given out at a time when the patient’s brain is numb from hearing the shocking diagnosis. A second person is needed to help track the information, ask questions and prompt questions from the patient.
2) This one is the most difficult, but in some ways it’s the most important: always get a second opinion. Medicine is art as well as science. There are always multiple approaches to solving a particular problem. The first doctor may be the best in his or her field, but it’s worth the extra time and effort to have that opinion and treatment plan confirmed by a second doctor. This step is difficult because once the shock of the dignosis or injury-causing accident has worn off, there’s a rush to get starated in treamtnet. Please, please, please take the extra time for that second opinion.
3) Talk about it. The diagnosis of a life-threatening disease has an enormous emotional impact on a family, especially the children. My friend’s grandkids range in age from 10 to 17. It’s necessary for patients to have a positive outlook. However, that focus on only the positive sometimes prevents everyone around them from sharing their true feelings, especially the fear and anxiety.
4) Now is the time to start a medical journal for your patient. Whether you use mine (www.blueprintforcaregiving.com) or create one of your own, have a single notebook or file where all the information is organized and kept. Having all the medical information in one place is a great stress-reducer.
5) Now is the time to actively engage in your own self-care. Caregiving is a dual focus enterprise—focus on the patient, and on the caregiver’s own well-being, too. Make space and time to care for yourself as well—exercise, get the sleep you need, eat well, find the support you need. And don’t neglect your funny bone, or your patient’s. Play, sing, dance, laugh. That lightness of spirit actually is physically good for both of you.
Blessings, Joanne

LIVING WITH INCONTINENCE

2011-10-26T11:37:00.000-07:00

Today's post was written by Mike Nygren, Director of Marketing Communications and came to me through the efforts of Darby Brignac, both of whom are from Sage Products. I think it's worthwhile information for caregivers who are having to cope with this sensitive topic.
Blessings, Joanne

Urinary incontinence is often the elephant in the room. No one wants to talk about it, even though more than 13 million Americans are living with this potentially embarrassing and debilitating health condition. Furthermore, the National Association for Continence found that most people wait an average of seven years before seeking treatment.
When experiencing incontinence, it’s essential to take immediate action. Urine is very harsh on the skin because it contains enzymes that can erode the outermost skin layer. Left unclean or unprotected, the skin can develop incontinence-associated dermatitis (IAD), or inflammation breakdown of the skin. It is a major risk factor for pressure ulcers, which can take months to heal or require painful and expensive surgical intervention.
While being clean is important when dealing with incontinence, protecting the skin has equal significance. Many cases of IAD occur when people fail to apply a barrier after they cleanse the skin. Barrier cream cloths can make incontinence care easier because they both clean and apply a protective moisture barrier to the skin in one step.
Many cases of urinary incontinence can be treated if you seek the help from your doctor. But in the meantime, keeping skin clean and protected is an easy way to avoid irritation cause by incontinence that can further affect life.
This post is contributed by Sage Products. Sage Products gives family caregivers access to the products nurses and hospitals trust most.

BRIDGING THE DEMENTIA COMMUNICATION GAP

2011-10-22T08:12:00.000-07:00

One of the most painful realities for dementia caregivers is the loss of recognition. As memory erodes, the patient loses the ability to recognize those most dear to them—spouse, children, siblings.
Michelle Bourgeois, a speech-pathology professor at Ohio State University has come up with a system that allows caregivers to bridge that communications gap, at least temporarily.
She advises caregivers to use flash cards to help ease those identity issues and answer the questions which dementia patients will repeat endlessly.
For instance, Bourgeois had a caregiver create two flashcards . One had a photo of herself as a child, which she labeled “This is my daughter Susan, at age 6.” The second card had a photo of her at her current age. That one was labeled “This is my daughter Susan now.”
The woman showed the cards to her mother, who had lost the ability to know who her daughter was. The mother studied the two photos and captions and was able to recognize her daughter and converse with her as her daughter and not as some vaguely familiar stranger.
Bourgeois advises caregiver to use a similar system to provide answers to the obsessively repeated questions. When the asking begins, the caregiver can hand the card to the patient and say, “The answer is on the card.” She reports that in the majority of case, it calms the patient and the questioning stops.
One key to using this system to bridge the communications gap is to be sure that the print on the card is large and easy to read, and that whatever is printed is a short, simple sentence.
Blessings, Joanne

KNOWING WHEN IT'S TIME TO MAKE A CHANGE

2011-10-15T13:41:00.000-07:00

Many caregivers struggle with the question of when it is time to move their loved one into a care facility and out of the home. It is such a tough question because of its emotional content—memories of “home” carried by both the caregiver and patient, as well as family dynamics.
Likewise the decision to bring in more help is a difficult one because often an elderly patient refuses to have “strangers in the house.”
If you can divorce yourself from the emotional side of the question, one way to look at it is to consider the safety of your loved one. Here are a few questions to ask yourself. I think it will be obvious from your answers when it’s time to make the change:
• Is your loved one capable of managing his or her medications without help?
• Is your loved one capable of using the bathroom without assistance?
• Does your loved one maintain an acceptable level of personal hygiene? Does he or she need to be reminded to bath or change clothing?
• If your loved one is hungry, can he or she safely prepare and eat a meal on their own?
• Can he or she distinguish strangers from friends and family in answering the phone or the door?
• Is your loved one capable of calling 911, you, or a neighbor in the event of an emergency?
• If he or she wears a medical alert device, do they know how to use it? Are they aware they have it on?
• Can he or she hear and respond appropriately to alarms, such as smoke or CO detectors?
If you believe it’s time to make a change, there are plenty of online resources. The book I recommended last week, Stages of Senior Care by Paul and Lori Hogan is also a terrific resource when you find yourself at this crossroad in caregiving.
Blessings, Joanne

WHEN TO GET MORE HELP

2011-10-08T09:30:00.001-07:00

When you’re trying to keep you loved one in his or her home—or in your home—the nagging question always seems to center on the issue of safety. “When is it no longer safe to leave my loved one at home alone?” The question may not be about moving your loved one to a care facility, but may involve deciding to bring in full-time help.
There are lots of safety check lists you can use, and if you want a long version, please send me an email at caregivingcoach@ymail.com and I’ll be happy to send you a detailed 13-question list for you to ponder.
On the other hand, here’s a short-cut method of making the determination as to when it’s time to move into a new mode of care:
We’ve all been in more than one relationship in our lives. Think back to when you were dating someone seriously, but you could feel that the relationship wasn’t going well.
There was a rule of thumb that covered that circumstance, which was: “if you’ve been thinking about breaking up, then you’ve already made the decision to break up.”
The same hold true in caregiving. If you’ve been thinking about moving your loved one to a care facility or hiring full-time help, then you’ve reached the point where that’s what you need to do. It will not be easy, but delaying only makes it more difficult and makes safety concerns for your loved one more acute.
For information on what the choices are, and some suggestions for taking the next steps, you can find lots of help in Paul and Lori Hogan’s book, The Stages of Senior Care.
Blessings, Joanne

TRAVEL AND CAREGIVING

2011-10-01T09:02:00.000-07:00

Traveling with someone who is ill, injured or suffering from a chronic condition isn’t impossible. In fact, I know of a handful of caregivers who have taken one or more trips with their loved ones.
The trip may be to check one last item off the must-see list, to visit far-flung family or friends for a final time, to attend an important event such as a wedding or graduation, or even to get a second opinion on treatment far from home. Whatever the reason, such a trip is sure to add to the store of family lore, so don’t avoid going just because you’re in caregiving mode with your loved one. Just be sure to do a bit more planning about how you’ll travel:
• Build the itinerary with the understanding that travel is tiring, so include plenty of rest stops and plan for covering less territory in a day than you would if both of you were healthy.
• Carry all medications with you. DO NOT pack them in the suitcase that gets checked with the airline or train. Think of them as being as essential as your passport or driver’s license.
• When making hotel reservations be clear about your loved one’s access needs. Are there safety bars to assist in getting in and out of the shower or tub? What about the toilet? Are the room’s doors wide enough to accommodate a wheel chair or walker?
• Be sure to let the airlines or train company know about any access issues or special needs that you will have. They are usually very willing to accommodate you and your loved one if they know in advance what’s expected. At the same time, don’t be surprised if the gate agent or conductor doesn’t know what you asked for. Keep your list of needs clear and to the point. Don’t hesitate to let people know if it seems like the word hasn’t been passed around to those who will be working directly with you.
• Carry your loved one’s medical information with you. That way, if there’s a problem, it will be easy to contact his or her physician or pharmacist.
• Buy travel insurance that includes medical evacuation. It’s relatively cheap and if a problem arises, getting your loved one back home won’t be a huge added expense.
Caregiving doesn’t mean you’re required to sit home with your loved one. If you two want to get out and see the world, by all means do so. Just spend a little extra time planning so that you both can enjoy the trip.
Blessings, Joanne

GET YOUR EXERCISE WHILE YOU CLEAN

2011-09-26T07:21:00.000-07:00

One thing all caregivers need is daily exercise to offset the effects of the stress they’re living with. The minimum is 30 minutes a day, every day.
That daily dose of exercise doesn’t have to be done all at once. It can be broken up into shorter segments because this is exercise for stress reduction, not fitness. Here are some ideas for combining housecleaning and exercise from personal trainer Sara Haley from an article by Marlo Solitto at www.agingcare.com in July. Her one, overriding piece of advice was to wear good workout shoes or sneakers when you’re doing these cleaning exercises:
• When you’re mopping floor, scrubbing tubs, pushing a vacuum, you’re getting a good workout. Put on some lively music and pick up the pace.
• Find a way to make those trips up and down stairs count for exercise. Add lunges or other agility drills.
• Tone your arms by keeping them raised as 90 degrees from your shoulders as you carry laundry to the washing machine. Work your legs with squats and lunges as you fold.
• As you vacuum, do lunges. Be sure to keep your back straight, your head facing forward and don’t let your knees go out farther than your toes.
There are plenty of household chores we all do every day. Get creative with them and see how to turn them into bits and pieces of that 30-minute minimum. And don't forget the exercise benefits of gardening. See if there are ways to work weeding, digging or raking into your exercise routine. Exercise will help you stay well while you’re caregiving, and that’s a great gift to yourself and your loved one.
Blessings, Joanne

WHY DON'T THEY EAT?

2011-09-17T06:56:00.001-07:00

One of the most vexing questions in caregiving is “Why isn’t my loved one eating?” Your loved one’s well-being is heavily dependent on nutrition, so a refusal—or the inability—to eat is frustrating and stressful for the caregiver.
Here are some thoughts on causes and ideas about solutions:
PROBLEM: With dementia, patients literally forget to eat when it’s meal time, will not be able to recall when asked if they have eaten, or if brought to a meal will forget what they’re doing mid-meal.
POTENTIAL SOLUTIONS: For someone who is still living independently, reminder phone calls and pre-prepared meals that are easy to access and eat will be helpful. For someone living in a care facility, it may take a person who sits with them to remind them to finish the meal.
PROBLEM: Lack of desire to prepare meals.
POTENTIAL SOLUNTIONS: There are many ways to provide pre-pared meals—you or someone else does the cooking and puts the meals, ready to heat-up in the fridge. Services such as Meals on Wheels can help, but usually only with one meal a day. Those are sufficiently large to provide a days’ worth of nutrition for one person. You can also set up a delivery system from your loved one’s favorite restaurants.
PROBLEM: Disinterest in eating.
POTENTIAL SOLUTIONS: Find out what the source problem is. Nausea from medications or chemo, dry mouth, problems with teeth or dentures can cause a lack of desire to eat. Check the setting—is it pleasant or dreary? What about the way the food is presented—is it appetizing? What does it smell like? Think of how un-appetizing your old school cafeteria food was, and recall that smell.
Portion size can also cause disinterest in eating. If you’re struggling to eat and you’re given what looks like a mountain of food, then your appetite is likely to disappear. Keep portions small.
PROBLEM: Your loved only wants to eat the same thing over and over again and its food value is questionable.
POTENTIAL SOLUTIONS: If your patient only wants to eat ice cream, for instance, vary it and boost up the nutritional value by adding protein powder and fresh fruit. Make smoothies and milk shakes. Variations on the theme of the one food will help you add nutrition, be it a sandwich—add cheese to meat for a double up on protein or lots of veggies if they’re missing—pizza or fish and chips (think tempura veggies along with the fried fish and potatoes).
Caregivers for elderly patients need to keep a perspective about what’s being eaten. The nutritional requirements don’t need to be the same as for someone who is suffering fro a life-threatening disease or serious injury. As parents of small children we worried about serving balanced meals, but with the elderly this may not be so important—they are not fueling growing bodies. A diet of ice cream, if that’s all they want at age 95 may not be all that problematic.
Finally a couple of questions to pose to your loved one when eating has become an issue:
“What do you want to eat? “ Whatever that may be, serve it, but keep portions small.
“What’s yoru favorite meal of the day?” Whether it’s breakfast lunch, dinner or something in between, make that the big meal of the day, and don’t worry too much about what they eat the rest of the time.
Blessings, Joanne

TIPS FOR MEDICATION SAFETY

2011-09-10T06:03:00.000-07:00

One of the most pressing problems for working caregivers, or caregivers who aren’t with their patients 24/7, is medication safety. How can you be certain that your loved one is taking her or his medications properly?
Your first step is a brown bag autopsy. This isn’t as grim as it sounds. You put everything your loved one is taking (prescriptions, over-the-counter drugs and all vitamins and supplements) into a brown bag and take it to her or his primary physician or a licensed pharmacist for analysis. You want to be sure that there will be no adverse reactions among the various items.
Once you’re confident that what she or he is taking is all going to work together beneficially, then you want to be sure that the pills are being taken at the right time and in the right number.
One way to do this is to observe how your loved one takes her or his meds during the day and at night time. Is she or he able to sort through the complexities without mishap? If so, then you can relax about medication safety.
However, if there’s any level of confusion about what’s to be taken when, then you might want to consider creating a chart to assist them. On it you’ll need one more column than the number of medications and supplements. That first column should be a time schedule that lists the time when each med is taken. Each successive column should have the name of the medication or supplement and its purpose. Opposite the time in the first column that the med is to be taken, make a note about how it’s to be taken—with food, an hour before eating, etc. Also list any warnings about causing drowsiness, nausea, etc.
If the chart is too confusing for your loved one, then you’ll need to create a pill dispenser each day. Each box in the dispenser is labeled with the time and instructions. “Take the pill in this box at lunch time, etc.”
If that proves to be too confusing, then you’ll need to consider in-home care for your loved one so that someone is on hand when medications are taken to ensure that the right pill gets taken in the right amount at the right time.
One of the most common reasons that elderly people are hospitalized is adverse drug reactions from taking medications and supplements improperly. Protect your loved ones from that kind of emergency by assuring they take their medications safely.
Blessings, Joanne

ARE THE DOCUMENTS UP-TO-DATE?

2011-09-03T13:56:00.001-07:00

The article opened with a series of short, provocative questions:
“What would be the consequences for you and your family if death or incapacity happened tomorrow?
“Would your planning, or lack of it, be helpful or create havoc?”
No one wants to think about the bad possibilities in life, but they are out there for both you as a caregiver and for your loved one. I know how hard it is to have the discussion about advance planning directives, but really, folks, it’s something you have got to do for yourself and your loved one.
Perhaps a way to motivate yourself is to ask these questions:
“If I were to suddenly become incapacitated, who would care for me? And who would care for my loved one?”
You can provide answers to those questions—and a handful of questions related to them—by taking the time to figure out what your long-term game plan is and what your loved one wants as well.
One way to start the conversation and to find out what issues you need to address in written documents is to visit www.caringinfo.org, the web site of the National Hospice and Palliative Care Organization. The site offers a list of suggestions for starting the conversation as well as a state-by-state list of the documents you’ll need to cover all your bases.
Likewise you can find another type of advanced planning form at www.agingwithdignity.org. This is a non-profit site dedicated to aging and end of life issues. The form is more informal, but covers all the necessary details for advance directives. However, it is not accepted in all 50 states, so check to be sure you and your loved one can use it where you live.
I also recommend a visit with an attorney who specializes in elder law. The few hundred dollars—or less—that you spend will ensure that when circumstances change and the documents are put to use, that you will be able to do as you had planned to do. Any of these efforts will save you time, energy, anguish and money in the long run. All you need to do is talk about it with your loved one and make sure those documents are up to date.
Blessings, Joanne

SELF-CARE TRINITY FOR CAREGIVERS

2011-08-27T12:54:00.001-07:00

It’s a given that caregiving brings with it a stress load that can threaten the health and well-being of the caregiver. That’s why so many experts—me included—so strongly advocate for caregivers to engage in active self-care.
One way to deal with the lack of time for self-care is to whittle down the to-do list to a basic three that cannot, and should not, be neglected. I call them the Self-care Trinity: exercise, sleep, and healthful eating.
Think of them in terms of your car. We all make time to maintain it, operate it wisely and fuel it well so that it can continue to provide transportation. Your health is as important to your caregiving as having a well-running car.
Exercise: You need to exercise a minimum of 30 minutes a day every day to help your body throw off the effects of stress. Your adrenal system is hard at work and it’s filling your blood with hormones that aren’t particularly helpful. Moving your body will help burn some of them away. It needn’t be 30 minutes or more at one time, if that doesn’t work for you. Be creative. Use five, ten or 15-minute blocks of time throughout the day and do something you enjoy.
Sleep: You need seven to 10 hours of sleep out of every 24. You can fudge on the overnight sleep, but only if you can make it up in a nap during the day. Lack of sleep is a short-cut to caregiver burnout and serious, life-threatening illnesses. If you’re not getting enough sleep because your patient needs you at night, then find help overnight or for a few hours during the day so you can nap. Perhaps your loved one needs sleep aids for a quiet night’s sleep. Perhaps you do because your stress levels are keeping your from getting the sleep you need. Talk to either your doctor or the patient’s about what can be done.
Eating: Athletes know that their performance can be helped or hindered by what they eat. Keep that in mind and go for healthful choices such as fresh fruits and vegetables, whole grains, grilled meats instead of fried, and drink plenty (as in more than 64 ounces) of water during the day. Steer away from caffeine, alcohol, tobacco, high-fat foods (like French fries) and white sugar. If you need to eat fast food, find places that make fresh food like sandwich shops and Mexican grills. If you find yourself in a burger place, opt for a salad.
I know that these sound like a lot to add on top of your already-full to-do list. But these are important for your continued ability to give care. Another way to look at it is that you need to be as compassionate in caring for yourself as you are in caring for your loved one. Ask yourself this question: “If I become ill who will care for my loved one?”
Blessings, Joanne

DREAMING NEW DREAMS

2011-08-20T07:41:00.001-07:00

Last week, the Caregiver’s Bill of Rights that I posted included one about the right “to make a life that will sustain me when I am no longer giving care to my loved one.”
That’s worth pausing over, so this week, I want you to consider what your life will look like when you are no longer needed as a caregiver. As a caregiver, you tend to keep your future focused on the needs and treatment of your loved one. And that’s a perfectly good way to go through life right now.
But your caregiving will come to an end at some point. Rather than allow that experience to be something like walking into a glass door you didn’t realize was there, it’s a really good idea to plan for that future. I like to think of this as dreaming new dreams.
Now, not tomorrow, is the time to begin to consider what you want your life to look like after caregiving. It’s the forward dreaming that we did when we were planning our education in preparation for our first career, or when we contemplated retirement at the end of our work years. If I’d been tuned into this kind of dreaming, I would have done it to prepare myself for life after the kids left the nest.
Your post-caregiving time will be a lot like empty nest syndrome. All that energy is going to need a place—or places—to be put. What will those be?
Start by taking stock of what you’ve learned and accomplished as a caregiver. Are some of those skills particularly satisfying? Would you like to be able to continue using them? What other kinds of uses require them?
What about the time and energy that you will have to spare when you’re no longer caregiving? Is there something you’ve always wanted to try, but put off?
Your new dream may include some things you want to return to, some things you’ve always wanted to try, or an expansion of some thing you have already learned. Listen to your inner voice and allow it to guide you in planning your life after caregiving. The dream of your future life will be worth listening to.
Blessings, Joanne

A BILL OF RIGHTS FOR CAREGIVERS

2011-08-13T09:00:00.001-07:00

Sometimes we need to remind ourselves of what our rights are. As caregivers, we tend to forget that our care and nurture is as important as the care of our loved one.
Here’s a Caregiver’s Bill of Rights from an anonymous—but obviously knowledgeable—source:
1. I have the right to take care of myself. This is not an act of selfishness. It will give me the capability of taking better care of my loved one.
2. I have the right to seek help from others, even though my relatives may object. I recognize the limits of my own endurance and strength.
3. I have the right to maintain facets of my own life that do not include the person for whom I care, just as I would if he or she were healthy.
4. I have the right to get angry, be depressed, and express other difficult feelings occasionally. When I express them, I will do so in a place where those feelings cannot possibly harm anyone else, especially my patient.
5. I have the right to reject any attempts—conscious or unconscious—by my loved one to manipulate me through guilt.
6. I have the right to receive considerate behavior, affection, forgiveness, and acceptance from my loved one for what I do, as long as I offer these qualities to her or him in the care I give.
7. I have the right to take pride in what I am accomplishing and to applaud the courage it has sometimes taken me to meet the needs of my loved one.
8. I have the right to make a life for myself that will sustain me in the time when my loved one no longer needs my help.
9. I have the right to expect and demand that on-going efforts be made in this country—and my community—to find resources to aid and support caregivers like me.
10. I know that I am never alone in my caregiving, that the knowledge of other caregivers is always available to help me, and that God’s loving presence constantly surrounds me and my loved one.
Blessings, Joanne

LEARN TO ASK EFFECTIVELY

2011-08-06T08:52:00.001-07:00

The one question I hear most often is “How do I get other family members to help with the caregiving?”
Asking for help is as much art as science, but before you start writing off your siblings or other family members as being unwilling to help, you first need to assess your asking ability.
“I need help caring for Mom (or Dad)” is not usually going to produce the desired results. A general ask like that, especially if it’s made in the midst of a larger conversation, is difficult to decipher if you’re on the receiving end. It’s simply too open-ended. The askee is most likely to ignore it rather than get mired down in something too large to handle.
On the other hand, a specific ask—“When you’re here this summer would you please take Dad on at least two half-day outings,” is both specific and clear. It’s harder to turn down. That doesn’t mean that your brother won’t turn you down, so you want to have a few skills in your repertoire to help him accept your request.
Here are some ideas:
• Be specific. “Could you please bring a meal for Mom and me at 5 on Friday? We just need two portion and please don’t bring anything with onion in it as Mom can’t eat onion any more.” This will work far better than “could you bring a meal by sometime?”
• Be realistic. Asking your brother to drive 300 miles every week so you can get a day off isn’t going to work. Can he come once a month or once a quarter? What about having him phone Dad once a week?
• Be creative. What are your siblings’ skills? If one is good with computers, enlist her or him in making and sending cards on a regular basis, or producing short videos or photos.
• Be flexible. If you want your sister to bathe Mom weekly and she doesn’t want to do that, then ask: what would she like to do on a weekly basis for Mom? The important piece here is not the bathing, but that your sis is engaged in Mom’s care on a weekly basis. Perhaps she’d be willing to take Mom to a movie or shopping, or read to her. You can always hire someone or find a professional volunteer through organizations like Visiting Nurses Association to help with the bathing.
• Be inclusive. A sibling who lives at a long distance doesn’t have to be automatically excluded from helping. Ask if they’d be willing to help track finances or insurance or any of the dozen paperwork threads that are wrapped around caregiving. That 300-mile driving distance can be overcome with technology and your willingness to ask for help, even from a distance.
Blessings, Joanne

MARRIAGE, OUTLOOK AND ACTIVITY

2011-07-31T15:17:00.000-07:00

It is becoming widely accepted that the health of the caregiver has a great deal to do with the health of the patient. If the caregiver is suffering from psychological or physical problems, then the quality of care given declines.
Now there’s a new study that expands that idea as reported in the June issue of Health Psychology, the American Psychological Association’s journal.
Basically, the study looked at more than 1,700 couples ranging in age from 76 to 90. They found a strong correlation between what they describe as depressive symptoms and functional or physical limitations within the couples. Previous studies had found the linkage in individuals. This is the first time that it’s been shown to affect partners.
The problem is a chicken and egg issue at its core: physical limitations such as not being able to shop for groceries and cook meals lead to depressive symptoms such as unhappiness, loneliness and restlessness. At the same time, depressive symptoms cause individuals to limit their physical activities. Which comes first?
The answer doesn’t really matter if you’re a caregiver. What is important is the understanding that the physical and emotional state of one partner in a long-term relationship can affect the other partner as well.
“When people are depressed, they tend to want to stay at home—but that causes a spouse to stay home more too,” one of the researchers said. “That’s a problem, because when older adults stop being active—going for walks, socializing, shopping—they risk losing that functional ability. These findings help to illuminate the often vicious cycle between depressive symptoms and our physical abilities.”
If you’re a caregiver experiencing depressive symptoms because of limitations to your physical activity, take action! Find a way to get out to exercise and socialize on a regular basis. In addition to being a good way to relieve the effects of stress, you can now see how doing something social or active will help relieve those unhappy feelings that come about because of physical inactivity.
If you’re caring for your parents and see the cycle at work with them, take action! Find ways to get activity into your parents’ lives. This may mean a move to a retirement home or assisted living facility where there are lots of social and physical activities, or it may mean that you’ll have to devise a plan for getting your folks out more often to shop, to exercise, to go to dinner or a movie.
In either case, the solution requires action on the part of the caregiver. The cycle won’t break itself—you’ll have to do it.
Blessings, Joanne

CAREGIVING UNDER THE 'HEAT DOME'

2011-07-23T08:52:00.000-07:00

Much of the US is experiencing a dangerous heat wave which the media are calling a heat dome. Here are some tips from the July, 2011 newsletter from Parent Care 101 (www.parentcare101.com):
1. Make sure that you check on your loved one several times a day.
2. You all need plenty of liquids in this heat. Everyone should be sipping water regularly throughout the day. Make sure your loved one has enough water.
3. This is no time to worry about the cost of air conditioning. The A/C controls the humidity that often comes with extreme heat. If you live in the Southwest, you'll need more humidity, so even using a spray bottle every hour to put moisture into the air will be helpful.
4. Keeping the inside temperature even 20 degrees cooler than outside can make a big difference.
5. If there's no air conditioning, then set up fans in the home.
6. Look for places to go that have air conditioning-- visit a senior center, do some shopping at a local mall, or go to restaurant or a movie.
7. If your loved one begins to have symptoms of heat intolerance (see the third website listed below), your first task is to call 911, then get their body temperature lowered. Cool, damp cloths or ice on pulse points is a good place to start.
Want to learn more about beating the heat? Try these sites:
http://www.weather.gov/om/heat/index.shtml
http://www.bt.cdc.gov/disasters/extremeheat/heat_guide.asp
http://www.nlm.nih.gov/medlineplus/ency/article/000056.htm
Blessings, Joanne

10 CAREGIVING TIPS

2011-07-14T08:07:00.000-07:00

Hi folks. Just a note before my customary post: I'll be on the road for the next seven days. I've got a tenuous computer situation, so this is coming early. Look for the next one as usual on Saturday July 23rd.

Barb Bennigsdorf runs Caregiver Solutions in Montrose Colorado. Here’s her list of 10 Tips for Family Caregivers.
I think they are excellent reminders to caregivers to steer clear of Caregiver Mentality, that singular focus on the patient’s needs to the exclusion of the caregiver’s needs for self-care. Remember that caregiving is a duality that cannot be separated. Self-care of the caregiver is as important as the care of the patient. If you become ill because you have forgotten to care for yourself, who will care for your loved one?
Here are Barb’s 10 tips:
1. Caregiving is a job and respite is your earned right. Reward yourself with respite breaks often.
2. Watch out for signs of depression, and don’t delay in getting professional help when you need it.
3. When people offer to help, accept the offer and suggest specific things that they can do.
4. Educate yourself about your loved one’s condition and how to communicate effectively with doctors.
5. There’s a difference between caring and doing. Be open to technologies and ideas that promote your loved one’s independence.
6. Trust your instincts. Most of the time they’ll lead you in the right direction.
7. Caregivers often do a lot of lifting, pushing, and pulling. Be good to your back.
8. Grieve for your losses, and then allow yourself to dream new dreams.
9. Seek support from other caregivers. There is great strength in knowing you are not alone.
10. Stand up for your rights as a caregiver, a family member, and as a citizen.
Blessings, Joanne

CAREGIVING, GARDENS, AND WEEDS

2011-07-09T14:56:00.001-07:00

This time of the year, I spent a lot of time in my garden. In part, that’s because I live in a place that has a 90-day growing season. You go like crazy in late May and early June, clearing away the dead stuff from last summer, and weeding, weeding, weeding. The weeds have no problems coming up even when it’s still snowing and overnight temperatures in the 20’s are killing all the other plants.
By now, I like to assume I’m on gardening auto-pilot—snipping a few of the choicer blossoms, pulling one, maybe two weeds, and just generally sitting in a rocker on the porch and taking it easy.
In those moments when I actually get to do that, I realize how like gardening caregiving is—bursts of furious activity, followed by times of relative calm.
Except for the weeds. They always spring up, just like a crisis in caregiving. Just when you think you have your loved one’s medical situation in hand, if not actually under control, something new comes up—a new diagnosis, new symptoms, a crisis involving a trip to the hospital, and you’re right back in the frantic, stressful pace again.
As a gardener, I accept the fact that there will always be weeds, but I learn to make peace with them. I don’t ignore them, because they’d take over the garden if I did. But the clear-the-weeds-at-all-costs attitude that I have in early spring has to give way to a more tempered approach or else I’d work myself into the ground.
The same holds true in caregiving. You give it all you’ve got in times of crisis, but you’ve got to cut yourself some slack when things are on a more even keel. Yes, there is probably a problem lurking around the corner. Let it lurk. You’ll get to it when it’s time to get to it. Don’t wear yourself out trying to avert the next crisis. Save your energy for dealing with it when it arrives.
It’s like walking through my garden. When I spot a weed, I’ll pull it, but only if the ground is moist so I know I can get the job done thoroughly. If the ground’s dry—or my hands are full or I’m on a tight schedule—I leave it alone. It’ll be there when the time is right to go pull it up.
Blessings, Joanne

WHAT ABOUT THE CAREGIVER'S SPOUSE?

2011-07-02T13:41:00.001-07:00

I met a woman at a recent workshop who posed a question that I don’t have a ready answer for. I want to share it with all of you to see what your thoughts on it are.
The woman said she felt she was managing her caregiving to her mom alright, but she was feeling very guilty about the time that her caregiving took from her husband and kids. “What do I do about that?” she asked.
Actually, I think she was asking two questions in one:
1. What is the best way to manage my family when I need to take time away from them for my caregiving duties?
2. How is the best way to deal with the guilt that this time imbalance is creating in me?
I started with the issue of guilt. I see guilt as an unnecessary burden that we pick up. Because it’s not necessary for us to carry this burden, it only adds to our caregiver stress. We need to be aware that we’re carrying it, and then set it down.
In her case, I asked her if she’d discussed the issue of the time imbalance with her husband and kids to find out how they felt about it. She had not, so I suggested that as a first step.
But let’s assume that in holding that family discussion, the husband or kids said that yes, it bothered them that she wasn’t as available to them as she had been prior to the caregiving assignment.
What would you suggest that she do in that instance? Please email your thoughts and ideas at caregivingcoach@ymail.com.
Blessings, Joanne

WHAT'S IN A NAME?

2011-06-25T11:16:00.001-07:00

I’ve always thought the word “caregiver” did a good job of describing someone who makes time on a regular basis to care for and support someone who is ill, injured or suffers from a chronic condition. But there are issues, even with a word as mundane as this...
In states that have laws allowing for medicinal use of marijuana, the term “caregiver” is one that is defined in those laws. In order to grow or dispense marijuana, an individual must become licensed or certified by the state as a medical marijuana “caregiver.”
There’s potential for confusion here when I’m talking about people who are givers of care, versus people who are in the medical marijuana business in the states where it is permissible.
I have also noticed a tendency of certain kinds of caregivers to not identify themselves with that word. It’s especially true for caregivers who are spouses. I first noticed the shying away from being called a caregiver by spouses of cancer patients. They see themselves as being in a support role for their loved ones, especially in the initial diagnosis and treatment phase. The mind-set is that it’s a temporary situation and the word “caregiver” is too fraught with long-term and terminal connotations to be used.
Karen Galloway of the Western Slope Region of the Colorado Chapter of the National Multiple Sclerosis Society says they have a similar situation with their clients and their spouses. “We don’t want to have people stop listening to the advice we have to offer because we use a word they don’t feel applies,” she said. So instead of using “caregiver” for these spouses and partners, Karen and her colleagues use the term “support partner.” That seems like a good choice if the person in question feels more comfortable with that descriptor.
By the way, caregivers are people who give care to other people. Caretakers are people who take care of other people’s property. Just thought you’d like to get that clarified, even if the meaning of “caregiver” isn’t as plain as it used to be.
Blessings, Joanne

DEMENTIA CAREGIVING AND RESPECT

2011-06-18T07:16:00.001-07:00

There are times when caring for a dementia patient is the very definition of frustration.
It is so maddening when a loved one repeatedly asks the same question for hours on end, seeming to disregard the answers that you provide.
What about the times when your loved one decides that he or she is going to go—or not go—somewhere, regardless of the reasonableness of that decision? Trying to get dad off the couch to adult day care so you can go to work can make you want to tear your hair out. Or convincing mom that her doctor’s appointment is not at midnight on Saturday night can leave you wanting to shut yourself in a closet and scream.
OK. We’ve all been in these and similar situations, but the question remains how to deal with the frustration that dementia-caused behaviors lead to without losing our sense of love and respect for our loved ones.
Writing in The Upper Room in 1991, Donna Dickey Guyer noted that she was able to find a way to remain loving and respectful of her 99-year-old mother (when she herself was 75 years old) by recalling her mother’s care for her when she was a child.
Ms. Guyer wrote that to her honor and respect meant that she was to have patience, tolerance and love in difficult days. To her it meant doing everything she did for her mother—emptying bedpans, changing sheets, preparing meals that would not be fully eaten-- from a place of love, just as her mother had changed her diapers, prepared food for her that she’d rejected, and kept her clean and safe when she was a child.
The frustrating behaviors aren’t going to magically disappear, but what can change is your understanding of them. Respect comes from a place of love, whether it’s love of a child who’s acting out, or a parent who’s engaged in dementia-fueled behaviors that are frustrating. When it happens, try to disengage for a moment, take a couple of deep, cleansing breaths, and remind yourself that the behavior isn’t aimed at you. It’s the result of a brain that’s not working as it used to. Then see if you can’t deal with what’s happening from a place of loving respect.
Blessings, Joanne

MAKE TIME FOR YOUR SPIRIT

2011-06-11T08:06:00.000-07:00

Do you know any caregivers who aren’t busy? I personally don’t. That’s because caregivers—me, included—tend to take on their caregiving duties without letting go of any of the other parts of their lives. The caregiving gets crammed in on top of home and family, work, social connections, community obligations, volunteer activities and hobbies.
The problem is that combining caregiving stress with a too-full schedule is dangerous to a caregiver’s health and well-being. One of the 12 keys to self-care that I teach about is to prune your to-do list to make room for the additions brought about by caregiving. Release the things that you can come back to later.
By doing that you’ll be able to make time in your schedule for self-care-- exercise, time off to goof off (which is actually good for you), and nurturing your spiritual life.
I find that spiritual nurture is among the first self-care practices to fall victim to a busy caregiving schedule. Meditation, prayer, attending religious services, staying connected to a faith family all seem to get set aside, rather than membership and attendance in civic or community organizations. Those organizations got along without you before you joined and they can function without you for a while when you’re caregiving.
Your spirit—or soul, if you prefer—needs tending along with your body, so make your spiritual practices a priority. It will help reduce the effects of caregiving stress on your body.
Here’s a prayer you can offer yourself and God whenever your busy-ness starts to overwhelm you. I adapted it from one I found online by retired pastor Ted Loder (www.tedloder.blogspot.com):
Holy One:
There is something I wanted to tell you, but there have been errands to run, bills to pay, appointments to get my loved one to, washing and more caregiving to do…and I forget what it is I wanted to say to you. I forget what I am about and why. O God, don’t forget me, please. Hold me close so that I stop long enough to remember that you are always here with me, so that I rejoice that I am never alone.
Blessings, Joanne

DRIVE IN BEAUTY

2011-06-04T09:04:00.000-07:00

Crossing the northern Arizona desert this week, I was struck by highway signs on the Navajo Reservation that read: Drive in Beauty. It seemed to me, as I drove for hours seeing the signs that this describes your caregiving journey as well as a highway trip. See if these principles apply to you and your caregiving:
* Drive in beauty means you release control of others. If they're driving too slow, you can choose to pass them or slow your pace to match theirs. Your goal isn't to force them to do what you want by tailgating them and forcing them to drive faster. If they're driving too fast, you give them space to pass you rather than forcing them to slow down. You don't need to concern yourself with their behavior. On the highway that's someone else's job, not yours.
* Drive in beauty means that you're aware of what's around you. The reservation has startling, rugged scenery and a big sky. But it also has flowers blooming by the roadside and other small-scale delights. Sometimes you need to go very slowly or stop completely to see and enjoy them. You may miss both the small and big moments if you're only focused on getting from Point A to Point B.
* Drive in beauty means to be at peace with your journey. The journey is shaped by your attitude. Are you fearful of the vast landscape you're crossing? It's mile upon mile of emptiness with very few safe havens within it. Do you feel angry about the necessity of making this long drive? You might have flown to save time, but then you would have missed the opportunity for introspection. Being at peace means accepting the reality of the journey-- its length and its inherent difficulties. It means you allow for all that while intentionally seeking blessings in the process of the crossing.
Drive in beauty. I hope you can give your care in the same state of beauty.
Blessings, Joanne

PURPOSE, CAREGIVING, AND LIFE

2011-05-28T07:21:00.001-07:00

Purpose, or meaning in life, is key to quality of life as well as survival. Viktor Frankl, the Viennese neurologist and death camp survivor, documented that idea very clearly in his timeless book, “Man’s Search for Meaning.”
But it turns out that purpose is at work in our lives daily, not just when we are in life-threatening situations. And that’s good news for caregivers since caregiving certainly provides purpose and meaning in our lives.
Analysis of research form the Rush University Medical Center in Chicago of 950 elderly people suggests that people with a sense of purpose are 57% less likely to die over a five-year period than those who lack that purpose or meaning in their lives.
It’s important to note that the study subjects had a mean age of 80. They were at a time in their lives when social contacts have faded because of death and disability, when people have long retired from work or even structured volunteer work, and general age-related conditions and frailties limit what can be accomplished.
Researchers discovered that the people within this age group who found ways to put purpose into their lives not only lived longer, but did better on a couple of fronts. For instance, they could more easily walk up and down stairs, perform housekeeping chores, and manage money than their purpose-less counterparts.
So whether you’re 40 or 80, caregiving provides that meaning which helps individuals age well. The trick for caregivers, of course, is to engage in active self-care so that the benefits of purposeful living are not lost to the effects of caregiver stress.
Blessings, Joanne

NEW WAYS TO THINK ABOUT MOVES

2011-05-22T16:02:00.000-07:00

In elder or dementia caregiving, one of the hardest decisions to make is to move your loved one out of his or her home—or your home—and into a more institutional setting. Making the move bearable for your loved may not always be possible—she or he doesn’t want to go anywhere and that’s that.
But it may help you to help them make the transition if you can remember some significant changes from your own life:
• What did it feel like to you as a child when your family moved to a new home in a new location? Think about those first few days of trying to find your things, especially if some of them had to be left behind. Try to recall what your emotions were when you went to the new school the first time—all those strangers and you didn’t know anyone. Did your parents’ logical explanations and promises that “everything will be alright” make any impact on how you felt?
• What did it feel like as an adult when you went to a new job for the first time? Managing to learn a lot of new names in a short period of time was stressful, wasn’t it? The same was probably true of learning new work rules—written and un-written—so that you weren’t creating problems right off the bat.
• Can you remember what it felt like to give up control of your life when you went into the military or other organization where someone else told you what to do and how to do it? You were probably a bit resentful, even if you managed to comply. Most of us find small ways in which to act out that rebellion—sneaking a forbidden treat, making jokes about the people in charge, etc.
I think you get the point. Moving your loved one puts them into the emotional pool I’ve just asked you to swim in. By honestly answering these questions, you can begin to experience some of what your loved one is experiencing. This sense of loss of the familiar, confusion in the new place with new people and new regimes is especially heightened if your loved one is suffering from dementia.
If you can think along these lines, then you can stretch your imagination far enough to strategize ways to ease this transition and the emotional upset it will engender. There’s a terrific article by Peter Silin, MSW, RSW at www.ec-online.net/knowledge/articles/nursinghomemove.html. Take a look at it if you’re in the process, or if you can see this kind of move coming down the road. It can be a big help in easing your stress and some of the stress of your loved one.
Blessings, Joanne

LOSS, LOVE AND CAREGIVING

2011-05-14T04:14:00.000-07:00

Have you been struggling to find a grounded space from which to respond to the killing of Osama bin Laden? I sure have.
We caregivers are compassionate people. And that makes me uncomfortable with my joy at bin Laden’s death. At the same time, I look at the enormous losses he caused in thousands and thousands of lives because of his cowardly terrorist attacks-- the bombings in Kenya, the USS Cole, the Twin Towers, the Pentagon and the four airplanes. I can’t help but hate him for the misery he has authored.
It’s impossible not to grieve with those who lost family and friends, yet celebrating bin Laden’s death in the face of their on-going losses feels out of place.
I found some wisdom in dealing with this swirl of conflicting emotions last Sunday from Pastor Mike Dunfee of First Trinitarian Congregational Church-United Church of Christ in Scituate, MA where we’re visiting.
Among other ideas, Mike pointed out that loss in general, but certainly sudden loss “changes the texture of our lives.” We are not the people we were. It’s why and how we date things from events of loss—the death of a loved one, or larger public events like Pearl Harbor, the assassinations of President Kennedy, Dr. Martin Luther King, Jr., and Robert Kennedy. And, of course, 9/11.
But Mike said that it’s not loss alone that changes us. Love does, too. He said the gift of love and relationship changes our lives for the better. It changes the way we think about ourselves. Old things acquire new meaning.
Look at what you’re doing as a caregiver. You’re living out your love for another person. You’re giving them the twin life-changing gifts of love and relationship. You are offering them the opportunity to change the ways in which they think about themselves. That gift of love is far more powerful than hatred.
Here’s a quote from Dr. King that helps me keep it in perspective:
"Returning hate for hate multiplies hate, adding deeper darkness to a night already devoid of stars. Darkness cannot drive out darkness; only light can do that. Hate cannot drive out hate, only love can do that."
Blessings, Joanne

SLEEP IS CRUCIAL

2011-05-07T04:57:00.000-07:00

At the first two caregiver workshops I led this year, there were questions about sleep. Mostly these centered around reducing the effects of the stress that was making sleep difficult.
The first and most obvious answer is to see your doctor for medications that can help you sleep. But that’s not always an option, particularly if you’re caring for the patient in your home. “I don’t want to zonk myself out because my husband might need me,” one woman commented. Here are some ideas from the Blueprint for Caregiving series if you decide against using sleep medications. (The series, with a separate version for Cancer Caregiving, Dementia Caregiving, Elder Caregiving and General Caregiving is available at www.blueprintforcaregiving.com). If you decide against using
sleeping pills there are some things you can do to help you to relax and sleep:
• Soften your bedding and be sure that your room is neither too hot nor too cold for your personal comfort. Cushy comforters and fluffy pillows can aid your personal comfort, and that makes a difference in producing a good sleep.
• Keep your room dark. That may mean you have to ditch the clock with the illuminated face or put up some light-blocking window coverings. Keep a small flashlight at your bedside in case you need to get up at night to help your patient.
• Keep the bedroom for bedroom activities—sleep and love-making. Take your TV-watching, reading, crafts, and office work to another room.
• Keep a schedule of going to bed and rising at the same time every day. It doesn’t matter if you go to bed early and get up early, or if you’re a late-rising night owl. Just keep it consistent.
• Booze can be a problem close to bedtime. Yes, it makes you sleepy, but it can then causes wakefulness in the middle of the night. Drop the drinks before bedtime. Try plain water or herbal teas instead.
• Caffeine in coffee, regular teas and sodas is a stimulant that can prevent you from sleeping, particularly if you take it close to bedtime. As with eliminating alcohol before bedtime, try substituting plain water or herbal teas.
• Napping during the day can affect your ability to sleep at night. If you strongly feel the need to nap, make it 20 to 30 minutes, and definitely not longer than one hour.
• If hunger keeps or gets you up at night, have a light snack, perhaps just a few crackers before bedtime.
• If you are still awake after 20 minutes, then get out of bed, go into another room and do something quiet. Read an instruction manual. Journal to empty your too busy mind. Read something soothing. Then go back and give it another try.
Sleep may feel like an indulgence, especially if your loved one is restless,
in pain, or just generally active at night. You need to re-frame your view of your
sleep. It’s a necessity, not an indulgence.
Blessings, Joanne

SUPPORT HEALTHY DIABETIC BEHAVIOR

2011-04-30T04:11:00.000-07:00

Diabetes is a significant health problem for people over the age of 60. According to the Diabetes Association, more than 23 percent of Americans in that age bracket suffer from diabetes.
If you’re a caregiver to an elderly parent who has been diagnosed with this disease, there are good reasons to pay attention to how your loved one is handling it:
Diabetes is the 7th leading cause of death in the U. S.
Its complications include high blood pressure, blindness, heart attack, kidney disease and stroke.
OK, you say. I know all that. But my patient isn’t following the doctor’s orders.
And that’s probably the source of considerable tension in your caregiving as you struggle to get the patient to do what’s good for him or her and all you get is opposition.
Here are some ideas to help your mom or dad—perhaps your spouse or child—stay focused on healthy behaviors:
• Study up on diabetes. There’s information at your library or through the Diabetes Association, www.diabetes.org. One medical study cited in the June, 2007 issue of AARP Magazine found that diabetics over the age of 65 show improved glucose control once their caregivers understood more about their disease.
• Keep you attitude positive and avoid nagging (hard to do, I know) over missed tests, meds, dietary restrictions or exercise routines. Nagging (you call it reminding, but it’s really nagging) builds stress and that has the potential to raise blood sugar levels. It will also dim any enthusiasm the patient may have been feeling about their glucose control regimen.
• Know what foods are banned from your loved one’s diet and then ban them from the house. Don’t sit down to a big slab of chocolate cake and expect your parent to be happy while watching you eat it. There are plenty of cookbooks available that focus on healthy meal plans for diabetics.
• Find a way to make exercise fun for both of you. It doesn’t have to be drudgery. Gardening, walking on the golf course instead of riding in a cart, or dancing can all be fun. Be creative and be willing to join your patient in whatever exercise is chosen.
• Be sure to recognize your loved one’s improved behaviors and the resulting improvement in glucose control. Everyone appreciates being acknowledged for their achievements.
Blessings, Joanne

CANCER CAREGIVING IDEAS

2011-04-23T07:07:00.000-07:00

This is a pot pourri of ideas for cancer caregivers, which, as usual, has some application to other forms of caregiving as well:
Two unusual organizations offer help through the web. First, there’s www.cleaningforareason.org, which will provide free housecleaning once a month for up to four months for any woman who’s undergoing chemotherapy treatments for cancer. The other is www.partnersinhealing.net which provides a book or DVD to help cancer caregivers to learn healing touch. The results have demonstrated a marked reduction in cancer patients’ pain, nausea, fatigue and anxiety.
When you are talking with a cancer patient, here are some conversational dos and don’ts from Rev. Debra Jarvis, an oncology chaplain at Seattle Cancer Care Alliance, and a cancer survivor:
1) Let the patient guide you. If there’s an abrupt change in topic take it seriously and don’t pursue that line of questioning, even if the question seem innocuous to you.
2) Never second-guess the patient’s choices. The moment the treatment decision is made, your job as a friend or caregiver is to support that choice. If you cannot support the choice, then you will need to let the patient know that is the case, but that you’ll be on the sidelines cheering and praying for him or her.
3) Don’t expect a reply from your emails, voice mails or get-well cards. Cancer patients have limited energy when they’re undergoing treatment. Be content that your good wishes are one-way messages.
4) Put your loved one on a prayer list at your church and theirs. The power of prayer can be amazing, and the comfort of knowing he or she is being prayed for is powerful.
5) Keep laughing with your loved one. Laughter makes good medicine because it produces “feel good” neuro-chemicals that can help boost the patient’s immune system.
For husbands whose wives are cancer patients, here are “10 things you should never say” from Marc Silver, author of Breast Cancer Husband: How to Help Your Wife (and Yourself) Through Diagnosis, Treatment and Beyond:
1. I thought you were healthy when I married you.
2. Is that the bad kind of cancer?
3. Do you want to stop and shop for a new car? (This was on the way home from the doctor’s office where the diagnosis was presented.)
4. Cheer up: your survival odds are 85%.
5. Isn’t it kind of like a root canal?
6. You’ve got your mother and sisters—you don’t need me.
7. Can you delay your mastectomy until sailing season is over?
8. It’s the bottom of the ninth, there are two out, but we’re going to hit this ball out of the park.
9. What do I tell my friends?
10. Why are you complaining about losing your hair? That wig looks better than your real hair.
Silver points out that these comments—all uttered by real men to their real wives who were breast cancer patients—reflect a lack of maturity, or fear, or frustration because the husbands felt so powerless to fix the problem.
He goes on to say in an article from the Los Angeles Times in 2009, that all that’s really needed is for the husbands to hold their wives, tell them they’ll be there for them, and listen to them when they need to vent.
That’s good advice for any caregiver.
Blessings, Joanne

JUST FOR FUN

2011-04-16T08:09:00.000-07:00

I'm a big proponent of laughter and lightness of spirit in caregiving. There's a physiological reason why: when we're engaged in enjoyable activities, like shared laughter, singing, dancing, or playing games-- our brains produce neuro-chemicals that not only make us feel good, but they also work to suppress the effects of stress on our bodies. As it turns out, laughter is good medicine.
With that in mind, today's post is intended to lightly tickle your funny bone and give you at least a chuckle. It will help you to lessen the effects of your caregiver stress.
The following came from the Washington Post's annual word definition contest of 2004. These are funny and creative. Enjoy!
Coffee-- a person who is coughed upon.
Flabbergasted-- appalled over how much weight you have gained.
Esplanade-- to attempt an explanation while drunk.
Negligent-- describes a condition in which you absentmindedly answer the door in your nightie.
Lymph-- to walk with a lisp.
Flatulence-- the emergency vehicle that picks you up after you are run over by a steamroller.
Gargoyle-- an olive-flavored mouthwash.
Balderdash-- a rapidly receding hairline.
Oyster-- a person who sprinkles his conversation with Yiddish expressions.
Frisbeetarianism-- the belief that when you die, your soul goes up on the roof and gets stuck there.
Blessings, Joanne

AMBIGUOUS LOSS

2011-04-09T18:41:00.001-07:00

If you are a caregiver to a loved one who is suffering from dementia, you are experiencing something psychologists call ambiguous loss. It’s a particular form of grief that centers on the fact that you’ve lost the person you know and love as their personalities, memories and ability to function are overtaken by their dementia. It is a particularly painful form of loss because they are still living and you are with them constantly, but they are increasingly gone from you.
When someone we love dies, we grieve their departure. We miss them. Their deaths become a dividing line in our lives. We date our personal calendars by the events that happened before their deaths and the things that occur after. “Mom was still alive, so I think that it must have been in 1974,” I might say.
In ambiguous loss, there is no dividing line, no clean break, just the on-going, day-to-day disappearance of your loved one as their brains function less and less. They are here and gone at the same time.
“Jan’s Story: Love Lost to the Long Goodbye of Alzheimer’s” is a new book, a very personal story of one man’s journey as a caregiver to a wife with Early Onset Alzheimer’s Disease. I highly recommend it for dementia caregivers simply because it’s an honest account of how ambiguous loss works in real life. CBS News correspondent Barry Petersen tells a compelling, but sadly familiar story in this very readable book.
“Jan’s Story” is also a crystal clear example of how Caregiver Mentality works by keeping a stressed-out caregiver from caring for himself while he focuses exclusively on the needs of his ill wife. Only as his health and emotional well-being are about to collapse does he begin—faltering at first—to care for himself in order to be able to care for his wife. He’s quite clear that his skewed thinking (Caregiver Mentality is the name I give it) nearly killed him. Did you know that one four-year study of sole caregivers to dementia patients revealed a mortality rate 63% higher than non-caregivers of the same age? He quotes that study and others as well to reinforce the need for caregivers to make self-care as high a priority as care of their loved ones.
There are other surprising and terribly honest revelations in Petersen’s book. I’ll just tell you to get it and read it. Keep it on the shelf next to the “dementia caregiver’s Bible,” “The 36-hour Day,” by Nancy Mace and Peter Rabins. If you haven’t read that one yet, be sure to get it and read it, too.
Blessings, Joanne

ARE YOU PREPARED?

2011-04-02T08:14:00.001-07:00

The earthquake, tsunami and nuclear disaster unfolding in Japan have featured news coverage that must tug at the heartstrings of every caregiver—the elderly people in care facilities who are unable to leave because of the contamination and have run out of medications.
No one wants to see their loved one in a circumstance like that. As a caregiver, you need to be prepared for a disaster, whether your loved one is living independently, with you, or in a care facility. The Red Cross has an excellent booklet on disaster planning (“Disaster Preparedness for Seniors by Seniors”) that was created in the wake of an enormous blizzard in upstate New York in 2003. I strongly recommend that you get and use this book. It’s useful in all kinds of caregiving, full of good advice for all of us.
In the meantime, here are 12 tips on preparing in advance to respond to a large emergency, some of which comes from www.agingcare.com:
1. Know what the potential threats are. The list should cover everything imaginable from a home fire to a community or regional disaster such as an earthquake or flood.
2. Learn your community’s disaster plans. Find out how residents are to be contacted, what the response and evacuation plans are and where emergency shelters are located.
3. Plan escape routes from your home and practice them. Each room should have an escape plan that everyone in the house knows about. Pick a safe place outside the house where everyone will gather after escaping.
4. Establish a communication plan. This plan needs to take into account a wide range of possibilities. How will you communicate if you’re not all together—land phone lines, cell phones, computers? Our family has an out-of-region contact who can relay messages during a disaster if local communications are difficult.
5. Create an emergency kit. Go to www.redcross.org. Click on the Preparing and Getting Training Tab. On that page, go to Prepare Home and Family, and then click on the Get a Kit tab. You’ll find a comprehensive list of what your emergency kit should have in it. Be sure to include a three-day supply of medications for your loved one in this kit.
6. Maintain your emergency kit. Once you’ve got it assembled, don’t neglect it. Make sure the materials are fresh and up-to-date. Rotate out medications, batteries and anything else that has a limited life span.
7. Create emergency health cards for the whole family. The cards should be kept with the person they describe in a purse, backpack or wallet. If you loved one is home-bound, make sure the card is someplace where it can easily be found and pinned to their clothing in the event of an evacuation. It should contain name, age, address, significant medical conditions and list of medications, your contact information, physician contact information and any other information that would be pertinent to emergency personnel. For instance, if your loved one is blind or deaf, this information needs to go on the contact card.
8. Learn CPR and first aid. Again, the Red Cross is an excellent source of classes, as are most hospitals and adult education providers.
9. Check your fire extinguishers. Make sure they have not expired, that you know where they are and how to use them.
10. Make copies of important papers and keep the second set at a location away from home. This is where a file like The Tool Box: Life Documents File is so valuable. You can find it at www.blueprintforcaregiving.com or create your own.
11. Plan for your pets. Your emergency supplies should include food and meds for pets as well as people. In exploring the local disaster response plan, find out where the pet shelter will be in case you and your pet are separated.
12. Keep your loved one’s special needs in mind in your preparations. If he or she has a home health care worker, find out what the agency’s disaster plan is. Find out the same information if she or he is in a care facility. Where will they be evacuated to? Does your loved one have equipment needs, such as walkers or wheelchairs? Include use of these in your plan. In addition to medications, think about extra supplies for incontinence or batteries for hearing aids and the like. Think about what your loved one will need if you are forced to live in a shelter for a few days or are unable to leave your home for the same period of time.
Preparing for a disaster will enable you and your loved ones to live through it with less stress than if you are unprepared. Don’t wait until disaster strikes. Prepare now.
Blessings, Joanne

TAKING IT EASY

2011-03-26T07:51:00.001-07:00

Caregiving is not relaxing work. We cram it into already-full schedules and it’s always stress-inducing. One important tool that caregivers can learn to use is self-care. It’s our theme this month here at the Blueprint for Caregiving blog.
Good nutrition, exercise, and sleep, are all important, but it turns out that goofing off is also a very good thing you can do for yourself to help release the effects of stress on your body.
Uh-huh, I can hear you say. And just when am I going to find the time to goof off?
It doesn’t have to take a lot of time to take it easy—20 minutes will do--but it does need to be intentional. That’s because our bodies need to be able to let physical tension fall away in order to release the build-up of stress that comes with modern life in general, but caregiving in particular.
It’s well known that stress symptoms such as generalized pain (think headaches), elevated blood pressure and lack of concentration can be positively affected by practices such as yoga or meditation. But sometimes even the stress-releasing practices can give rise to more stress because we’ve got to get them into the schedule and then show up for them.
Science is now discovering that little versions of these relaxation techniques, such as rocking in a rocking chair or dangling our feet in a pond or walking on the warm sand of a beach-- even for just a few minutes-- can produce beneficial results.
It’s because our brain puts out some wonderful feel-good chemicals when we’re happy. Even these short bursts of pleasure-producing activities can get those chemicals pumping through our bodies. Those chemicals not only make us feel good in the sense of being happy, but they can actually give our immune systems a boost.
That’s why taking it easy turns out to be pretty important. The stress chemicals we live with day-to-day as caregivers attack our immune system. The feel-good chemicals counter those ill effects.
David Spiegel, MD, of Stanford University’s Center on Stress and Health says too much down time isn’t good for us, but a balance between times of intense activity and very little activity is good because it mirrors our natural body rhythms and sleep patterns.
There is no how-to or to-do here. Don’t over-plan or uber-organize. The goal is to find small windows of time when you can relax and do nothing more than sit and let your body relax by contemplating something beautiful from a shoreline to a flower to a star.
Blessings, Joanne

'GOOD THINGS' YOU CAN DO FOR YOURSELF

2011-03-19T07:55:00.001-07:00

In my workshops, I preach that self-care for caregivers is as important as the care of the patient. Caregivers fall into what I call Caregiver Mentality in which they become so focused on caring for their loved one that they forget to care for themselves. (Go to the archive here and look for the post from May 29, 2010 for a more thorough discussion of this topic.) The results can be disastrous—serious illness, even death before the death of the patient. Caregivers need to ask themselves: “If I become ill, who will care for my loved one?”
With that in mind, there are a lot of little things that caregivers can do for themselves to engage in that self-care. Exercise, relaxation through prayer and meditation, eating well, and getting enough sleep are on the top of the list. Here are some ideas for more “good things” to do for yourself culled from the pages of Martha Stewart Living Magazine:
• Need to give your self-esteem a boost? Just five minutes of activity in the open air such as walking, cycling or gardening will do just that according to research from the University of Sussex, England.
• Plums may be even better than blueberries in supplying the antioxidants you particularly need when you’re living with caregiving stress. Blueberries were supposedly the top of the heap for antioxidants (vitamins A, C, and E to strengthen your body’s immune system). But new research from Texas A&M University shows that plums may have more antioxidants than blueberries. They certainly have more than other stone fruits such as apricots, peaches or nectarines.
• Drinking one-and-a-half to three glasses of red wine every day not only keeps a woman’s heart healthy, it also may prevent excess weight gain, according to a 13-year study of 20,000 women undertaken at Brigham and Women’s Hospital in Boston. As a red-wine lover let me just say, “Yea!”
• Did you know that the scent of lavender will help you relax to sleep? More importantly, did you know that the scent of jasmine may be even more effective in inducing sleep? Keep some—or both—by your beside.
• Pick quality over a cheap fix when you’re contemplating a food treat. The way we feel psychologically after we eat a treat is as important as how we feel physically says Jeanette Broneé, founder of Path for Life, a wellness center in New York City. She advocates eating one piece of really good dark chocolate if you crave a treat, instead of “junky candy.” You’ll feel better about yourself if you give yourself the quality treat.
Self-care is really just a matter of extending the compassion you are giving to your loved one to yourself. These little acts of self-kindness are good for you, and can be shared with your loved one, too.
Blessings, Joanne

APOLOGIES FOR THE LATE POST

2011-03-13T13:49:00.000-07:00

This weekend I was on a women's retreat with members of my church here in Colorado. It was a wonderful time of interospection, learning and fun, but I wasn't able to post to this blog. Look for the regular Saturday posts to resume this coming weekend.
Joanne

SUNSHINE CAN BE YOUR FRIEND

2011-03-13T13:47:00.000-07:00

We’re living in an era of sun-is-the-enemy. We all slather ourselves and loved ones with the highest SPF sun screen we can find every time we even think about venturing outdoors. Mostly that’s a good thing, but in our rush to make an enemy of sunshine, I think we’re missing a few points, times when we should welcome sun on our skins:
• Our geographical position in relation to the equator may dictate our blood pressure. One of the vitamins we absorb through sunlight on our skins is D3, and one of the things it does for us is to regulate blood pressure. A 2006 study in the journal Hypertension reported that for every 10 degrees of longitude from the equator that you live, you can expect at two to three-point rise in mean blood pressure.
• Babies sleep longer at night if they are exposed to sunlight, according to a study at John Moore University in Liverpool, England. Of 56 babies studied between the ages of six and 12 weeks, the babies who soaked up twice the sunlight of others average 77 minutes more of sleep per night. This is one case where you still want to use sun screen on the wee ones while they’re getting the benefit of sunlight.
• William Grant, PhD, who is responsible for the Sunlight, Nutrition and Health Research Center (SUNARC), is taking an epidemiological look at sunlight and disease. His thesis is that lack of sunlight’s ultraviolet-B, which helps the body synthesize vitamin D, is responsible for a host of fatal ailments, including reproductive and colo-rectal cancers. He says there are significantly higher rates of these cancers in the northeast with its gray winter skies, than in the sunny southwest.
• Post-surgery, make sure to have your loved one assigned to a sunny room. Research reported in Psychosomatic Medicine reported that people in sunny rooms—which had 46% more natural light than dark rooms—self-administered 22% less pain medication in the first 24 hours after surgery. More sun might equate with quicker recovery.
• Sunshine helps you to relax. If you’re feeling the effects of caregiver stress, take a walk in the sunshine, and bring your loved one along to help her or him relax, too. There are two colors that further help us to relax—green and blue. That means that if you’re walking in a park, where there’s lots of green, or beside a body of water, where there’s lots of blue, your body will benefit even more.
The bottom line is that sunlight can do good things for you and your loved one, so don’t demonize it and hide from it. However, let’s not revert to the ‘60s when we’d slather ourselves with baby oil or cocoa butter and bake. Moderation is never a bad thing, especially when it comes to sunshine.
Blessings, Joanne

LITTLE THINGS MEAN A LOT

2011-03-05T08:11:00.000-08:00

For those Boomers out there, yes, this was the title of a hit pop song in the ‘50s. (Or maybe it was the early '60s. Who can remember?)
For all you caregivers, regardless of your generation, it’s going to be our theme for the month of March. On the calendar, we’ll move into the Easter season with Mardi Gras and the start of Lent. Then comes the Ides of March. St. Paddy’s day will go marching by, and we’ll hit the vernal equinox on the 20th, the official start moment of spring. It just seems like a good month for us to focus on self-care in little ways that nurture and support us so that we can give care to our loved ones.
Sometimes we create barriers to good self-care because we don’t want to have to hear the usual lectures about eating right, getting exercise, etc. But I’m planning a March that’s filled with fun self-care ideas:
• You’ll find the Friday mini-posts to the Blueprint for Caregiving page on Facebook will contain items that I’m calling surprise nutrition. Did you know that a cocktail made with fresh strawberries may bolster your immune system? Or that fruit juices are actually good for you?
• I’m thrilled to report that up to three glasses a day of red wine is not only heart healthy for women, but may actually help with weight maintenance. You can read more about it at this blog when I post “Good Things” that I discovered in reading borrowed Martha Stewart Living magazines this summer. (Look for a Wednesday post at Blueprint for Caregiving on Facebook for how to organize a magazine swap so you don’t break the bank trying to get all the ones you love to read.)
• Sunshine isn’t quite the villain we’d been led to believe. There are real health benefits in exposing yourself to sunshine in moderation.
• There will even be a post here on the benefits of doing nothing!
Think of yourself as needing as much care as the loved one for whom you are caring. Start thinking about the little things you can do for yourself to keep you happy and fit while you’re giving care. And don’t miss my blog posts or Facebook posts this month for lots of ideas on those all-important “little things.”
Blessings, Joanne

AGING IN PLACE-- WHAT'S POSSIBLE?

2011-02-26T10:07:00.001-08:00

Earlier this month, ABC World News looked at a variety of issues surrounding care of aging parents, the last of which was aging in place, or allowing parents to stay in their homes.
The “everyman” subject of the segment was an 85-year-old man who insisted on living in his home because he didn’t want to go to assisted living which was “full of old people.” It was, from my experience, a pretty typical example of the level of stubborn denial that keeps a senior in a home past the point of safety.
But what can you, as a caregiver do when you’re met with this adamant refusal to move?
ABC looked at two options: paying for senior support services which cost this family $20,000 a year, which was contrasted to $40,000 that assisted living would cost or $80,000 for a year in a skilled nursing home. The second choice mentioned was the Village Movement, a type of pay-in cooperative which provides some assistance, such as transportation and home maintenance to enable seniors need to age in place. The most famous of these is the Beacon Hill Village in Boston, MA.
As good as that sounds, it’s really limited to a few urban locations such as Beacon Hill, where the needs and service providers are located quite close together. There are only 60 in existence at the moment. For folks in suburban or rural settings, it’s not a viable choice.
An excellent book on this subject, which I recommend, is Stages of Senior Care: Your Step-by-Step Guide to Making the Best Decisions by Paul and Lori Hogan, the founders of Home Instead Senior Care. Given their business of supporting seniors who don’t want to leave home, this is a remarkably unbiased and objective look at the choices and the means of making them.
They list 10 choices for senior care. These are not exclusive of one another, but may be used in combination:
• Aging in place through adaptation of the living space to the individual’s mobility needs, and through use of Village Movement type of cooperatives for maintenance of the home.
• Family care in which the senior either stays at home under the family’s care or moves in with the family.
• Senior Centers which are available for social, educational and meal programs for seniors who are active enough to walk to the center or drive.
• Adult day care centers where a senior spends most of the day. These are used when family members charged with the seniors’ care are working.
• Non-medical care at home which involves paid home helpers and companions through businesses such as Home Instead Senior Care, aging Grace, Aging Care and a host of others.
• Medical care at home for conditions requiring medical aid for respiratory problems, intravenous feedings or assistance with medications.
• Independent living communities, where seniors live in their own apartments and have access to restaurants, shops, theaters, museums and parks.
• Assisted living centers are similar, but with the availability of medical assistance. Meals are generally taken in a common dining room.
• Skilled nursing facilities are more than mere warehouses for disabled seniors. The best include mental and physical therapy as well as music, art and other mentally stimulating activities.
• Palliative care and hospice, which is now extended beyond the original end-of-life criteria. Palliative care is another name for care management. Hospice services and facilities now take in a wider range of patients beyond those who are about to die. The emphasis remains on comfort care, rather than medical intervention to prolong life.
There is no magic wand that can be waved over the issue of aging in place to solve the myriad of problems that it entails. One worthwhile suggestion from the ABC series was to begin conversations on the topic with your loved ones as early as possible. Don’t wait until your loved one has fallen, or some other crisis has occurred. Start talking now, get an understanding of what your parent wants and doesn’t want, and why. And keep checking in. Their circumstances and opinions may change over time.
Blessings, Joanne

THE 'SPORTS MODEL' FOR GETTING HELP

2011-02-19T11:09:00.001-08:00

You know you need help. You would love it if someone—a sibling, friend or neighbor-- would take over some of your caregiving duties so you could get away for an hour or two, maybe even a day or a weekend.
But the help you want and need just isn’t materializing:
• People have offered but because you couldn’t think of a task for them in the moment, nothing ever came of it.
• Your siblings aren’t cooperating. They don’t seem to hear your requests for help.
• You suspect there may be assistance “out there” in the community. Somewhere. But you haven’t the time to go look for it.
• There aren’t enough hours in the day for running your life and caregiving. You simply don’t have time to figure out who to ask, what to ask for and how to integrate this help into your life.
Take a deep breath and relax. Asking for help isn’t all that difficult if you learn to model your caregiving to mimic a sports team.
It doesn’t matter what the sport is, they all operate on the principle that each team member has a particular skill to bring to the team effort, and that there is one person who decides when and where to use those skills—the play-caller.
For instance, the manager of a baseball team calls down to the bullpen and says “get so-and-so warmed up I need him to pitch in the next inning.” He’s specific in asking for what he wants. He doesn’t ring the bullpen and ask if anyone’s interested in helping out, some way, soon.
If you think like the team leader, you’ll assess your needs, who’s available to play that day (week or month) and make assignments.
Start by creating a roster. Call friends and family members to find out what they’d like to do, and what they’re capable of doing. Maybe brother Bill is very reluctant to help physically care for mom, but he’d be willing to take over management of Medicare and the insurance.
If you want time off, ask your team who can come in on a specific day for a specific period of time. And don’t be afraid to have that time-off just to go goof off. You need time away from caregiving. Period. It’s OK if you just sit on a park bench for three hours.
One key to asking is to be specific. When my sister was ill, we had a tough time with meals brought in by volunteers. Some days they wouldn’t appear at all, then on other days two—or more—would show up at the same time. Portions were unpredictable. Then, one of the volunteers decided to become the “captain” of the meals team. She created a roster and made sure that the volunteers knew who had brought what for the preceding week, that they knew what day and time they were to deliver the meals and how much food they were to bring.
One last thought: unlike a sports team captain, manager or coach, you can’t demand performance, you can only request it. Most family and friends are willing, even eager to help, they just need to know what the assignments are, so go ahead and get organized, and then ask!
Blessings, Joanne

TRACKING THE DRUGS BEING TAKEN

2011-02-12T07:49:00.000-08:00

In last week’s ABC News series on caring for aging parents, one segment dealt with drugs, and strongly recommended a process known as a “Brown Bag Autopsy.” It’s not about dead bodies, but instead it’s about looking at all of the substances—prescriptions, over-the-counter drugs (OTC) and other supplements that your loved one is taking.
The name is applied because you put all that stuff into a brown bag and take it to your loved one’s primary care physician or pharmacist and let them analyze it.
With aging loved ones, or those suffering from dementia, the issue just isn’t how many and what kind, but on what schedule are all these various drugs being taken? All too frequently, people who are ill, or who are suffering from a painful injury, the effects of dementia or the frailties of aging, will become confused and take the drugs incorrectly.
The host of this segment in the series, Dr. Richard Besser, a medical consultant to ABC News, said one-third of people between the ages of 57 and 85 take more than five prescription drugs and 68 percent of them add OTC drugs. Add into those numbers the vitamins, nutritional supplements and herbal medicines available, and the potential for harmful mistakes is high. All of those items must go into the brown bag to be checked.
Another way of accomplishing the same result is to maintain a list of all of these items, along with the instruction of how they’re to be taken. If you can get your loved one to do it accurately, have them log what they take and when so that information can also be added to the analysis. There are pages dedicated to these kinds of lists in The Medical Journal available at www.blueprintforcaregiving.com.
Another important point made by Dr. Besser is that often, physical changes that appear to be symptoms of a new medical problem may actually be the result of mishaps with these drug combinations. It’s another reason to have a Brown Bag Autopsy before launching your loved one into a new regimen for treatment of a condition they actually may not be suffering from. Before starting a new treatment, have the drug list and schedule checked for harmful interactions. Sometimes the new condition is merely a problem that can be solved by correctly assessing and using the drugs in the brown bag.
Blessings, Joanne

'WAHT TO DO ABOUT MOM AND DAD'

2011-02-05T08:13:00.001-08:00

This past week, ABC World News with Diane Sawyer focused on caregiving issues as part of its on-going series “Families on the Brink.” Entitled “What to Do About Mom and Dad,” the segments looked briefly at a wide variety of issues facing caregivers of aging parents.
I’m sharing a summary of it here for those of you who may have missed it, and for those of you who are in other caregiving circumstances. Some of what was broadcast applies to all caregiving. If you’d like to see more, visit www.abcnews.com/wn.
The first segment featured a round table discussion between author Virginia Morris (How to Care for Aging Parents), geriatricians Dr. Marie Bernard and Dr. Neil Resnick, and Martha Stewart, the lifestyle maven who has founded the Martha Stewart Center for Living, a senior health care center within Mt. Sinai Medical Center in New York City.
They concluded that conversations with your parents about aging, care and end-of-life issues has to be started early, before there’s a crisis. Ask these types of questions and listen, carefully, to the answers;
• What are you concerned about?
• What are you afraid of?
• What do you hope for?
The next segment dealt with medication. Dr. Richard Besser, who’s a medical consultant to ABC News, talked about tracking your loved one’s medications and when they are taking them. It’s something you’ve heard me preach about. Make a list of everything—prescription medications, over-the-counter (OTC) drugs and dietary supplements—and take them to the primary physician or have them reviewed by a pharmacist. One-third of people between the ages of 57 and 85 take more than five prescription drugs and 68 percent of them add OTC drugs. Look for next week’s post for more on this crucial topic.
The third segment covered driving and safety. Frankly, it was horrifying to see a 90-year-old man whose movements are obviously affected by Parkinson’s insist on driving. That’s the thing about Parkinson’s—it also produces dementia, from which I think this gentleman was suffering. He announced that if he couldn’t drive, he’d move to Nigeria where they don’t have driver’s licenses. And he meant it. There weren’t any new insights. If you live in one of 44 states that allows you to “turn in” an unsafe driver, you or their doctor can have their license revoked or at least force them to take a driving test.
This was another place where the experts suggest you talk about this topic before there’s a crisis. When asking for your loved one to surrender their keys, always offer an alternate method of transportation for them. It’s a whole lot easier to get those keys if they don’t feel as if they’re being stranded.
Sibling conflict and lack of participation was the next segment. This is the one I hear about most often from caregivers. One family of six brothers and sisters, with divorced parents on opposite sides of the country who both needed care, said they were able to finally resolve their conflicts by recognizing that everyone reacts differently to a parental medical crisis. Here’s their advice:
• Make space for your siblings’ different ways of responding. Just because you feel compelled to visit your dad in the hospital all day, it doesn’t mean that your sister showing up for 20 minutes is a bad thing.
• Let everyone contribute according to his or her ability. You may be the chief of medical appointments, but perhaps another sibling would be well-suited to handle the insurance and Medicare issues or research the condition and its treatment. Not everyone needs to do all of the pieces of the caregiving.
• Support one another. Your sibling will be all the family who’s known you all your life when your parents are gone. Don’t let the caregiving issues drive you apart. The brother who’s hundreds of miles away can participate in the caring by regularly phoning the others who are doing the hands-on work, and offering thanks and verbal pats on the back.
• Live from a place of empathy, which will allow for forgiveness. “You’ll find a deeper spirituality than you’ve ever known,” said one of this family’s sisters.
The final edition looked at the issue of aging in place. I thought it was a very superficial overview and didn’t begin to plumb the depths of managing parental care when the parent insists on staying in his or her home. For my money—and yours—the best resource on this topic remains Paul and Lori Hogan’s book, Stages of Senior Care: Your Step-by-Step Guide to Making the Best Decisions.
One potential solution that was discussed was use of the Village Movement, which is a type of pay-in cooperative for support of seniors who want to age in place. It has its limits, which I’ll be discussing in two weeks at this site, so come back, y’all.
Blessings, Joanne

'WE ARE THE CARE SYSTEM'

2011-01-29T13:26:00.001-08:00

Suzanne Mintz, co-founder and president of the NFCA says 80 percent of long-term care in this country is done by family and friends. She puts it pretty bluntly: “We are the care system.”
No one knows for sure how many family (otherwise known as unpaid) caregivers there are in the U. S., but the educated guesses from organizations such as AARP, the National Family Caregivers Association (NFCA) or the U. S. Administration on Aging, range from 36 million to 60 million.
The need for an enormous army of unpaid caregivers is going to increase dramatically in the coming years as the Baby Boomer generation ages. Some diseases, such as Alzheimer’s and Parkinson’s have risk factors that are dependant on age. The older the person, the more likely he or she is to suffer from one of these chronic and debilitating conditions that require care.
Aside from the increase in the number of unpaid caregivers, there’s another serious concern-- the health of the caregivers themselves.
According to a study issued in 2007 from the Division of Health Psychology at Ohio State University, Columbus, caregivers appear more likely than non-caregivers to get infectious diseases and they are slower to heal from wounds.
Caregivers show long-term, if not permanent changes in blood chemistry as a result of the stress of caregiving. Elevated levels of cortisol and epinephrine found in caregivers have been linked to heart attack stroke, and possibly even the growth of tumors.
So we have a population of about 75 million Baby Boomers heading into the time in life when they will need care, and we know that caregiving causes health problems in caregivers. Now what?
If you are a caregiver, it means that you must learn to take care of yourself. Reframe your priorities so that you regard self-care as being equally important as the care of your loved one. Learn to ask yourself the question, “If I become ill, who will care for my loved one?”
Here are a few tips for engaging is self-care:
• Get enough sleep. You need at least seven to 10 hours a day.
• Eat right. Reduce drastically foods high in fats, sugar, white carbs, liquor and caffeine. Drink lots of water and eat fresh fruits, vegetables and whole grains.
• Exercise daily. A good minimum for stress reduction-- as opposed to overall fitness-- is 30 minutes every day.
• Release your pent up feelings in a safe place—join a caregiver (or other) support group, keep a journal, or participate in a caregiver on-line chat group.
The fact that there are millions of caregivers means that you are not alone. I also firmly believe that God is strongly present to us when we’re caregiving. When you’re feeling isolated and lonely, keep these two thoughts in mind, then find companionship of the Holy Spirit in prayer or reach out to a friend or other family member for support. It’s one way to engage in good self-care.
Blessings, Joanne

MORE THOUGHTS ON HEALING

2011-01-22T09:43:00.000-08:00

Last week, I wrote about how the presence of loving individuals surrounding and encouraging someone who is ill or injured can have a markedly beneficial effect.
The subjective side of healing is fascinating, and important if you’re a caregiver, so I want to add some thoughts today for you to consider.
Based on her experiences healing from breast cancer, Julie Silver, M. D. wrote about its more non-medical elements the November/December issue of AARP The Magazine. Much of what she wrote about you already know from reading information on how to reduce the effects of caregiver stress—exercise, get sufficient sleep, eat right.
But she also had a list which she called “Putting Your Mind to It.” This applies to your patient but also to you since both of you are dealing with stress. Stress produces hormones that can be harmful, especially over the long term. They block the body’s ability to heal itself and—in your case as caregiver—they can damage your health and well-being.
Here are what Dr. Silver described as “mental strategies” that can help both you and your loved one:
• Reduce your pain. Pain in your loved one because of his or her condition, and in you—what about that headache or those aching muscles and joints?—disrupts your needed sleep and adds to your stress. “Don’t be a hero,” she writes, “talk to your doctor and get some relief.”
• Consider mind/body therapies such as meditation, guided imagery and other means of coaxing your body to relax. If you’re interested in more in-depth information, there’s a chapter on this subject in my book, Search for Light: Ten Crucial Lessons for Caregivers (www.blueprintforcaregiving.com).
• Monitor you mood. Your emotions will affect the way you heal and respond to stress. Don’t let your down feelings take over your world view. Gratitude and an intentional search for small blessings throughout the day allow for a significant mood change. Do something everyday that makes you happy—call a friend, take a bubble bath, read something you like or that inspires you.
• Surround yourself with love. This is the subject of last week’s post, so ‘nuff said. The patient needs loving support to help in the healing process, and so do you.
• Tap into your spirituality. Meditation and prayer can help your body to relax and your mind to find a positive frame for your experiences as a caregiver. I strongly believe that none of us is ever alone; we are constantly surrounded by a loving Divine Presence who is willing to listen to our laments, our anger and frustration, and who will share the caregiver burdens we’re carrying. Access this Presence through prayer and meditation and you can feel the weight of your responsibilities becoming lighter.
Blessings, Joanne

BEING THERE

2011-01-16T09:43:00.001-08:00

The on-going story of Congresswoman Gabrielle Giffords has captured us all. I am fascinated by the way in which her recovery seems to be fueled by the family and friends who have rallied to her bedside.
It’s an important lesson for all caregivers: your presence, just being there and doing small things, is important to the healing of the patient.
Let’s be clear that healing doesn’t mean the same thing as cure. Of course we would cure our loved ones if we could. We would restore them to their original state of health before they were injured or became ill. Healing is a different idea, meaning to bring about a wholeness, or a recovery of a portion of the patient’s self. Congresswoman Giffords will probably carry the physical effects of her wound with her for the rest of her life, but she can heal from the effects of it. That includes not just the healing of tissue affected by the wound and surgery, but an internal healing as well. That internal healing is spiritual and emotional, and ultimately leads to acceptance of her life as it will be going forward.
Patients need a loved one like you to support them, to cheer them on in their healing efforts, and sometimes, they need you just to simply be with them.
ABC Evening News ran a piece last week which looked at the role of loved ones in healing and recovery. The bottom line is that your presence, loving and supporting and being with the patient, is key to the healing/recovery process.
Bob Woodruff, an ABC correspondent who was critically injured while covering the war in Iraq said that he is sure his remarkably swift recovery was due to the presence of his wife and family at his bedside. “I wasn’t able to respond, but I knew they were there, whispering in my ear, holding my hand, rubbing my feet,” he said.
If you’d like a more in-depth report on the subject, go to www.abcnews.go.com and look for the link to the article. They’ve posted dozens of comments on the subject from physicians across the country, some of whom agree, others of whom don’t.
I can see why a medical person, who must have measurable outcomes, might balk at the idea that the mere presence of a loved one by a patient’s bed would change anything. But I’m an experienced caregiver and I know how powerful the presence of a loved one can be, just being there for the patient.
So don’t wonder whether you should take time out of your busy caregiving schedule to spend time sitting with your loved one. Just do it! Whispered words of affection or forgiveness, a hand held, a song shared—these all are the tools of healing, which we can all use on behalf of our loved ones.
Blessings, Joanne

DISCOVERY AT THE POINT OF COMPASSION

2011-01-08T17:26:00.001-08:00

Caregiving is sacred work. Caregivers are living out their love for another person, literally putting compassion into action.
Yeah, yeah, you may be thinking. So what?
The ‘so what’ is that in this place of compassion, there is an opening to deep, deep levels of spirituality that is often overlooked by the caregiver.
You’re so caught up in the day-to-day, in figuring out the medical world you’ve entered, in dealing with stress, and in trying to keep your own life on track that you miss this door that’s opened to you.
It doesn’t much matter how you name or frame the Divine. I know it from a Christian perspective, so for me it’s the trinity of God, Jesus and the Holy Spirit. For others it may be the Universe, Allah, Higher Power, Yahweh, or any of dozen of other names and understandings.
However you name it, that creating, animating and sustaining Divine Power is with you on this caregiving journey, and one of the best things you can do for yourself is to take the time to nurture your relationship with God.
Doing so allows your soul to enlarge in this sacred work that you’re doing. It enables you to know-- really know-- that you and your loved one are not alone in this time of suffering.
By making time to pray, meditate, read sacred or inspirational books, or sing spiritual songs, you open the door to this comforting and strengthening Presence. In developing this relationship, you can come to know yourself more deeply as the person created by and beloved by God.
Believe me, that is one excellent way to help your body shed the effects of the stress you’re living with. Good self-care includes spiritual nurture. Be sure you make time for it.
Blessings, Joanne

CREATE A 'HEALING GARDEN'

2011-01-01T10:57:00.000-08:00

Look at the world through your loved one’s eyes, and you’re likely to see a lot of human-made surroundings-- impersonal, confusing places like medical offices, pharmacies, or even the room or bed in a care institution that has become home.
Given that reality, perhaps you could provide a place where your patient can get in touch with natural surroundings in an outdoor space, or even trough a small touch of nature in a houseplant or two. Even in the depths of chronic pain or dementia, patients respond to this connection with nature, which seems so deeply imbedded in human experience.
There is a well-developed movement in modern architecture that incorporates natural settings, especially in the design of medical institutions. Healing gardens, as these spaces are called, are places where patients and caregivers have the opportunity to see and interact with nature.
Hospitals across the country have made room for gardens where patients and their families can not only enjoy looking at or being in a serene environment, but can actually take part in limited gardening activities as well.
Study after study shows that measurable stress indicators drop when patients and caregivers have the opportunity to be in a garden and participate in its care.
As a caregiver, both for yourself and your patient, you may want to think about how you can adopt this principle for your circumstances.
Obviously, if your patient lives at home and there is a yard or garden, then making time and creating a pathway for him or her to get into that space could be part of your daily routine together. Even a small balcony in an urban setting can provide enough space for bringing in plants that create that healing garden experience.
If your loved one is living in a care facility, find out what opportunities there are for them to be taken outdoors to see a natural setting or garden. In my hometown, where there’s ample natural beauty, there are also winters that last far too long, so indoor plants are needed to provide that year-round touchstone with nature.
If appropriate, incorporate opportunities to interact with the plants—tending them, touching them, enjoying the sweet scent of a flower.
Our need for connection to the natural world is hard wired into every human being. Recognizing this, and then assessing where opportunities can be found to do that will help you both. You can shed some of the effects of the stress of your caregiving responsibilities, and it may also help to sooth your loved one.
Blessings and best wishes for your New Year, Joanne

CHECK IT OUT!

2010-12-29T10:09:00.000-08:00

Not too too my own horn, but...
Go to www.boomer-living.com. I'm the Featured Director in today's issue of Boomers Plugged In.
If you don't know about this site, and you're a member of the Baby Boomer generation-- or caring for one-- it's a valuable resource.
Blessings, Joanne

DON'T WAIT FOR DISASTER TO STRIKE

2010-12-26T06:41:00.000-08:00

According to the Alzheimer’s Association, six of every 10 dementia patients will wander. When they do, their lives are at risk.
And yet, how many of you dementia caregivers are prepared to deal with the reality of this dangerous potential?
Too often, I hear some statement like “Well dad hasn’t tried to wander off yet, so we don’t need to worry about that right now.” The problem is that there’s no way to know when dad will wander off. It makes sense to be proactive to prevent wandering rather than wait for disaster to strike.
The story that ran in the Los Angeles Times last month concerned a 92-year-old dementia patient whose family was in denial about the possibility of him wandering. When he did, he was lost for nearly 24 hours. The story had a happy ending when he was found, tired, hungry and dehydrated, but safe. Sadly, not all of the stories end that way.
In this case, the family was convinced that though their loved one was suffering from dementia, he was not going to wander. They all went to dinner in a large restaurant and let him go to the restroom alone. He didn’t come back.
“He kind of has dementia,” said one of his relatives. “He might not have remembered that he was with us or where he was.”
Oh brother. Without dealing with the denial of reality inherent in those statements, let’s just focus on the obvious fact that as a person with dementia, he has significant short-term memory loss and can be easily confused in surroundings where there are large groups of unfamiliar people. Obviously he could not remember he was with his family in the large and suddenly unfamiliar restaurant. And he likewise couldn’t remember where he was, so he went in search of “home.”
Don’t wait until something like this happens to your loved one. Take action now.
The Alzheimer’s Association, www.alz.org or 800-272-3900 has some terrific information to help you make sure your loved one will stay safe.
Blessings, Joanne

GREETINGS ON CHRISTMAS DAY

2010-12-25T13:51:00.000-08:00

I'm in the Boston area with family. I send you all my best wishes this holiday season. I hope that in whatever caregiving you may be engaged in you are able to find the presence of the Holy One who strengthens and comforts you.
Blessings, Joanne
PS Look for a caregiver tip post tomorrow.

A HOLIDAY CHECK LIST

2010-12-18T15:13:00.001-08:00

One of the blessings of traveling home to aging relatives for the holidays is not just the chance to celebrate with family, but to have the time and opportunity to really observe what’s going on in your loved one’s life.
While you’re decorating, roasting chestnuts, or baking cookies, use the time to take stock of your loved one’s condition. Here are some things to check out, courtesy of a list published today in the Los Angeles Times’ Home section:
· What’s their mental state? Are they confused, depressed or forgetful more than normal?
· Are they under-nourished or dehydrated because they have trouble handling grocery shopping and meal preparation chores?
· Do they bathe and clean house regularly?
· How are they handling their medications? Do they remember what each is treating and do they take them in a regular routine?
· Are they consuming too much alcohol?
· Do they fall frequently?
Elder abuse is a serious problem, so here are some warning signs if you are relying on a paid caregiver while you live at a distance:
· Recent changes in banking or spending patterns;
· The paid caregiver isolates your loved one from family and friends;
· The caregiver exhibits some behavioral problems such as poor anger control or excessive drinking;
· Your loved one seems fearful of the caregiver, or, alternatively, views the caregiver as their new best friend. Spending money on the caregiver or because the caregiver suggests it should be a red flag.
If you suspect abuse, physical or financial, contact your local Adult Protective Services (usually county-based) or local senior services office. Go to www.eldercare.gov for a listing of local senior agencies in the area where your loved one lives.
If the problems you note involve increasing frailty, then consult with your loved one’s doctor about developing a case management plan. Leaving your loved one when you’ve noticed a decline is worrisome until you have a care plan in place. Be sure to get in touch with local family, friends and neighbors to share your concerns, and elicit their help in checking up on your loved one. Be sure to give them your contact information in case of an emergency.
Blessings, Joanne

'TIS THE SEASON FOR HEALTHY CHOICES

2010-12-11T14:41:00.000-08:00

We’re well into the holiday season, which means that food is taking center stage in our lives. It’s so hard to ignore the desserts, the candies and cookies, not to mention the yummy drinks—I love eggnog lattes!—and high-calorie dinners with meats and gravies, and side dishes awash in cream and/or cheese.
As a caregiver, your job is to take care of yourself, as well as your patient. You must remain strong to care for him or her. Ask yourself, “If I become ill, who will care for my loved one?”
Your food choices are hugely important in that regard.
Athletes know this. During the 2010 season, pitcher C. J. Wilson of the Texas Rangers achieved a change of attitude about food in the clubhouse for the pre- and post-game buffets for the players. He argued that the barbecue, TexMex and usual high-fat fare was going to impede the team’s ability to win games during the long, hot summer schedule. So management started adding fresh fruits and vegetables and organic foods to the buffet. The Rangers certainly made use of the better fuel—they won the American League Championship, beating the New York Yankees.
You’ve got an assignment that would make the 162-game major league season seem wimpy by comparison. Doesn’t it make sense for you to make the same kind of change in terms of your eating habits, especially in December?
· Go for the raw veggies and dip or even the roasted nuts. Avoid the cheese and crackers, guacamole and tortilla strips and those creamy dips.
· If you want to drink at a party, alternate an alcohol drink with a glass of water, starting with the water. It will allow you to be more sober and save on those empty alcohol calories.
· Eat a snack at home before heading to a party. If you’re not hungry when you get there, you’ll be less likely to over-indulge.
· Eat smaller portions. You can have a little of everything, just eat less of all of it. You’ll avoid that horrid stuffed feeling.
· Skip a few of the higher calorie items like gravy on the potatoes, butter on the bread, ice cream with the pie.
You don’t have to fast during the holidays, unless that’s part of the way you observe them. But you don’t have to over-indulge, either. A healthy eating plan will help you go the distance like the Texas Rangers were able to do. Remember, your game plan is to remain healthy to give care: “If I become ill…”
Blessings, Joanne

DEMENTIA CAREGIVING REMINDERS

2010-12-04T11:48:00.001-08:00

The other day, when we were at the beach, I had the opportunity to observe a family with a dementia patient.
A father, suffering from dementia, was brought to the beach with his wife, his sister-in-law and daughter. The women had carefully, and with painful slowness, gotten him from the parking lot, across the beach and seated in his wheelchair. After a while, the three women left the man to go swimming. While they were gone, he put on his baseball cap, his shoes, and got a bag of various items through which he was searching for something. In the process, most of the items in the bag went into the sand. After about 15 minutes, the daughter came out of the water to see what her dad was doing. She scolded him for dumping her phone and car keys into the sand.
Watching this scene as it unfolded, I was reminded of three principles of dementia caregiving:
1) Safety comes first. In general, it is not a good idea to leave patients with advanced dementia on their own in a public place. It’s difficult to know what the patient will do, and public places, such as an unfamiliar beach with lots of people, can cause anxiety and heightened confusion. Three caregivers came to the beach. A better choice would be for no more than two to go swimming at the same time so that the father was not left on his own.
2) Nothing is predictable. The fact that Dad hasn’t wandered, or grabbed a knife by the blade or had a car accident before now doesn’t mean it isn’t going to happen today. Think ahead in order to be prepared for the sudden change that makes your normal way of living a threat to your patient. Lock up anything that might be dangerous like guns—and ammunition— and kitchen knives. Don’t leave anything that’s dangerous if swallowed unsecured. This includes drugs, supplements and cleaning products. A better choice for the beach would have been to have items like the car keys and cell phone securely out of the father’s reach.
3) Let love, honor and respect guide your attitude and responses. In dementia caregiving there absolutely will be moments that are horridly frustrating or embarrassing. Even in those moments, please remember that your loved one hasn’t done what he or she has done to cause you problems. Hang onto the knowledge that their brains aren’t working properly. Handle them, and the difficult situation, without shame or blame. Rather than scolding her father for dumping her phone and car keys in the sand, a better choice would have been to pick up the items and put them somewhere so that it won’t happen again. Of course, the daughter was frustrated. Anyone would be in those circumstances. You can have your anger and frustration, accept them as normal responses, but if you’re guided by love, honor and respect, then you don’t express them to your loved one by scolding him or her. You can find somewhere else to vent.
These principles aren’t rocket science, but I know they are difficult to remember when there’s a crisis. Plan ahead to reduce the possibility of a crisis occurring. And when it does, do your best to look for solutions that incorporate love, honor and respect.
Blessings, Joanne

AN EXERCISE IN GRATITUDE

2010-11-27T14:41:00.001-08:00

The exercise was pretty simple:
There were two concentric rings of individuals facing one another. The atmosphere in the room was subdued and sleepy. It was the first event of the morning at a conference of church musicians. Few people knew one another.
We were to look the person facing us in the eye and then say one sentence of gratitude. Uncomfortable shuffling followed the instruction.
“Oh come on now,” the instructor chided. “It’s simple. Just say one thing you’re grateful for and the person facing you will tell you what they’re grateful for.”
So we began. I spoke about the beautiful day. The person facing me was grateful for safe travel. We switched partners. I spoke of the joy of singing. The person opposite me mentioned having a job that he loved.
And so it went for ten very short minutes. At the end of the time, the atmosphere in the room had changed markedly. There was energy and laughter where there had been subdued quiet before.
I tell you this story as a reminder during this Thanksgiving season that we can easily shift into a positive attitude by recognizing the many blessings in our lives.
Yes, it’s tough to be in the circumstances you find yourself in right now—caring for a loved one who is ill or injured. You’re dealing with the impact of this reality across your entire lifestyle and are probably finding it hard to find anything for which to be grateful.
But remember, it’s easy to move yourself into an attitude of gratitude, just as we did at the conference.
If you don’t have someone to bounce your statements of gratitude off of, then create a Gratitude Journal. Every day during the coming week, write down at least one thing that you’re grateful for. If you get on a roll, write down several, but the minimum requirement is one a day.
My guess is that by recognizing the things for which you’re thankful, you’ll find yourself living in a more positive frame of mind and with greater energy. And that, in itself, is something to be grateful for.
Blessings, Joanne

HOPE AND ALZHEIMER'S NEWS

2010-11-20T11:12:00.001-08:00

On January 1, the first Baby Boomers will turn 65, and in the process begin the first chapter of an enormous healthcare crisis.
No, it’s not about Medicare, it’s about Alzheimer’s disease, which is the only one of the top three diseases—cancer and HIV/AIDS being the other two—in which risk is heavily dependant on age. After 65, risk of Alzheimer’s climbs steeply. This disease is costing us $172 billion annually in lost income and treatment expenses. That number is expected to rise to more than $1 trillion by mid-century because the number of those afflicted will nearly triple in that time.
In addition, the number caregivers involved in the Alzheimer’s healthcare crisis will rise from approximately 11 million today to an estimated 26 million by 2050.
Sounds awful doesn’t it?
However, I want you to know there’s cause to be hopeful that the crisis may be assuaged if not outright averted.
It reminds me of another health crisis that affected us Boomers when we were children—polio. That disease took a terrible toll, but ultimately it was completely halted by the development of vaccines. The hope for Alzheimer’s patients now, and the patients of the future, is that medical science is close to breakthroughs on a couple of fronts.
Because this is National Alzheimer’s Awareness Month, the Pharmaceutical Researchers and Manufacturers of America (PhRMA) hosted a teleconference this week to which I was invited. The purpose was to discuss where American drug researchers and manufacturers are in the fight against Alzheimer’s.
While the representatives of Eli Lilly & Co., Merck and Pfizer stopped well short of announcing they had found the medication which would halt, cure or reverse Alzheimer’s, they did say that on a couple of different fronts they believe new, important medications would become available to the public in the next two years:
· Drugs that would inhibit or block the production of the protein that forms the plaque which causes the damage to brain function in Alzheimer’s patients;
· Use of a lightly irradiated molecule in brain scans to let doctors see far earlier when someone is developing Alzheimer’s. Early diagnosis means earlier treatment and better outcomes in the long-term.
While the conversation with these physicians and scientists did not include the announcement that Alzheimer’s patients, their caregivers, and the rest of us Boomers are hoping for, I believe it’s a clear indication that there’s genuine light at the end of this long and terribly dark tunnel.
Hold onto that hope. As Dr. Bernie Seigel says, “In the face of uncertainty, there’s nothing wrong with hope.”
Blessings, Joanne

CAREGIVING BY THE NUMBERS

2010-11-13T13:48:00.001-08:00

Because November is National Caregivers Month, I want to focus on some information about caregivers and the work you do.
A common feeling shared by almost all caregivers is that they are “in it alone,” so in my workshops I try to dispel that sense of isolation by sharing some numbers related to caregiving. You might find the following interesting, amusing, or shocking, but I hope you’ll see you’re definitely not alone:
· AARP figures there are between 30 and 38 million caregivers in the U. S.;
· ABC News estimated in 2006 that 44 million Americans were caring for aging parents;
· The National Association of Family Caregivers says there are 54 million caregivers, and
· The federal Administration on Aging lists 60 million caregivers in the U.S.
I find the numbers amazing. Who knew there were so many caregivers among us?
The good news for you as a caregiver is that not only are you not alone, but with that many caregivers you should be able to find others who are doing what you’re doing. That means you can share joys, frustrations, information and suggestions, which will ease your caregiving burden.
Finally, one really big number comes from AARP, which tried to figure out the value of the care being provided by unpaid family and friends. They settled on a three-tiered pay system for various locations, calculated the estimated number of caregivers and reported that in 2006 the cost of that free caregiving exceeded $350 billion!
These numbers aren’t simply curiosities. They’ve been the basis for some changes in public policy and workplace practices that are aimed at helping caregivers. If you have an Office of Senior Resources or an Area Agency on Aging in your community, you can benefit from these number games. Both exist as a response to the dawning awareness of the important role that caregivers play in delivery of healthcare services, as well as the increasing understanding of the needs of caregivers.
Whether or not you can remember the numbers, I hope you’ll remember this: you are not alone and help is out there if you’re willing to do just a little bit of looking for it.
Blessings, Joanne

WHO QUALIFIES AS 'CAREGIVER?'

2010-11-06T16:40:00.001-07:00

Do you know whether or not you’re a caregiver? That seems like a ridiculous question, but sometimes you can be a caregiver without realizing it. Since November is National Family Caregivers Month, this seems like a good time to think about this issue.
For me, a caregiver is anyone who makes time on a regular basis to care for someone who’s ill, injured or suffering from a chronic condition. The most clear example is the spouse of a dementia patient. That person is a caregiver 24 hours a day, seven days a week. It’s pretty obvious.
But sometimes the role of caregiver is less clear, when you’re talking about people who are caring for caregivers.
For instance, my friend’s parent are in their 90s. The dad is in either the beginning stages of dementia, (initial assessment), or suffering from normal mental decline appropriate to his age (a second opinion).
The mom’s sister, who is in the early stages of dementia, came for a visit, and due to some physical complaints was diagnosed with cancer. The family decided to keep the aunt living with the parents while she underwent chemotherapy and radiation.
My friend is worried about her mom who’s caring for her sister and her husband. I think she also ought to be concerned about herself because she’s the second-level caregiver, organizing a small team of volunteers and jumping in herself to help her mom out when she’s taking either her sister or husband to their various medical appointments.
When I asked her about her self-care plans she gave me a blank look. “I’m not the caregiver, I don’t have the same problems that my mom does,” she said.
She’s right, of course. Her mom is the primary caregiver and is shouldering the largest part of the burden. But my friend is not free from the physical, emotional and spiritual demands of the situation. Caring for her mom, organizing the team of volunteers, fretting over the state of her dad’s health and now her aunt’s status, she needs the same self-care plan that the primary caregiver does.
Does this sound like you or someone you know? You’re a caregivers when you’re caring for the caregiver. Expand your understanding of what it means to be a caregiver and accept the possibility that while you’re not the main or primary caregiver, you still need to take care of yourself.
If you want more information on self care, look for Search for Light: Ten Crucial Lessons for Caregivers and its supplement, the Blueprint for Caregiving series at www.blueprintforcaregiving.com.
Blessings,
Joanne

FREE LIVE CONSULTATION

2010-11-02T09:18:00.000-07:00

Have you ever wished you could have a chat with somone who knows a lot about caregiving-- like me-- and the issues you're facing at a particular moment?
November is your opportunity to do just that. Go to www.blueprintforcaregiving.com to check it out. The offer is this: buy any of the books, workbooks or CDs at full price and I'll include a live 20-minute consultation for free. We can chat on the phone or via Skype.
There are a couple of "catches:" You need to make your purchase before Dec. 1, and you must schedule your chat time with me no later than Dec. 15.
I decided on this offer because I'm not scheduling any new workshops at the moment. This gives everyone the opportunity to have a live micro-mini workshop with me to either get general support, or to work on problem solving.
Blessings, Joanne

STARTING A CAREGIVER SUPPORT GROUP

2010-10-30T16:36:00.001-07:00

If you can’t find an existing caregiver support group, what then? Simple. Start one. It can be done institutionally, such as by an employer or a large workforce, or a church or other faith community. The basic requirement for “critical mass” is about a half-dozen people, though even three people can have a lively and effective support group. They need to be willing to meet regularly. Here are some ideas:
· Talk to your loved one’s doctor to see if that office would be willing to put out the word among other patients and their caregivers so you could gather.
· Put out the word through your local community newspaper, cable access TV station, radio station or workplace newsletter. Put announcements in the newsletters of the local hospitals, and in the bulletins of local churches.
· Find a quiet, private spot where you can meet. Aside from an un-used office at work, other places might be at the local library, the senior center, the hospital or a church.
· When you meet, have a lightly organized agenda. Share caregiver information from an outside source, and perhaps have group members recommend an article they read in a magazine or on-line, a book or a website. After that let the members take turns talking about their concerns and questions.
· Be sure to get the members to agree not to interrupt anyone while she or he is talking. Questions at the end are OK. After a member has shared their concerns, the group can offer advice based on experience, if the sharing person would like it.
One group that is beginning to form in Southern California decided to use the 52 Design Review Sessions, or chapters of Blueprint for Caregiving as outlines for their meetings. Because each chapter is two to four pages in length, they provide just enough material on a single caregiving topic, and that makes Blueprint very useful for support groups.
Blueprint for Caregiving has four forms, all of which exist as print-out CDs. Blueprint for Cancer Caregiving, for Dementia Caregiving, for Elder Caregiving, and the generalized version under the title Blueprint for Caregiving. You can’t listen to them, but you can load them into your computer and read them on the monitor, or print them out to read wherever you go.
For more information about Blueprint for Caregiving, please visit www.blueprintforcaregiving.com.
Blessings, Joanne

WATCH A VIDEO/MAKE A DONATION

2010-10-27T12:43:00.000-07:00

I have checked this out and it appears to be for real.
Go to www.komenphiladelphia.org/video to view a four-minute video made by a group of 136 former NFL cheerleaders. It's up-beat and fun.
For everyone who does that, a donation from United Healthcare will be made to the Susan G. Komen Foundation to support breast cancer research.
It's easy, fun and one small way to observe national Breast Cancer Awareness Month. It can't hurt, and it might just help.
Blessings, Joanne

FINDING A CAREGIVER SUPPORT GROUP

2010-10-24T08:51:00.001-07:00

One thing that you caregivers can do for yourselves is to find a support group and attend it regularly. It’s one of the ways you can actively take care of yourselves by finding a safe place where you can share your strong feelings. At the same time you have the opportunity to give and receive advice and support from other caregivers.
Patient support groups have been around for more than twenty years because of initial research that purported to show that patient outcomes were more positive among cancer patients who were part of a support group. Those results have been discounted by recent research. However, those newer studies indicate that patients of all types who attend support group experience lower levels of distress. Bottom line: they feel less stressed, and that more relaxed state enables them to simply feel better. Feeling good can also translate into faster recovery from treatment.
So why do caregivers need support groups? To whittle down the research to the most basic, it’s the same as for patients—it’s important for stress reduction. Stress reduction is directly related to caregiver well-being. A high level of well-being enables caregivers to remain strong to care for their loved ones.
However, finding a caregiver support group isn’t always easy. The patient support groups are plentiful. There are support groups for families, which are helpful to caregivers, but which also will include non-caregivers. The focus in these groups tends to be on the patient and how the patients’ response to their illness and treatment affects the family members. Good stuff, for sure, but not necessarily focused on the caregiver.
If you’re in an urban or suburban location, the local hospital or the organization which supports your loved one’s disease (American Heart Association, the Cancer Society, Alzheimer’s Association, etc.), is a good place to find a support group.
Sometimes, though, there isn’t one that makes sense for you, so you might want to consider starting your own. It’s not as difficult as it sounds. I’ll give you some ideas in next week’s post.
Blessings, Joanne

NEW DIRECTIVES

2010-10-16T16:26:00.000-07:00

Caregiving is a complicated process. And no area of it is more complex than the subject of quality of life choices and advance directives, those documents that patients can use to determine who is going to make decisions about their care when they no longer can, and just what those decision can—and cannot—be.
Last week I was privileged to be part of a conference for caregivers hosted by the Cancer Center at Hoag Memorial Hospital, Presbyterian in Newport Beach, CA. In a terrific program offered through the hospital’s Palliative Care Services, I found out there’s some new material to share with caregivers on the subject of advance directives and what I’d call care management.
At this particular hospital, Palliative Care extends far beyond the limits of keeping dying patients comfortable. It has become what I consider care management. All patients-- every single person who checks into the hospital for in-patient care-- are offered these services. What that means is that the medical team who are treating the patient, the patient’s caregiver and other family members and the Palliative Care team meet to talk about the full spectrum of the patient’s needs. One of the services the team provides is to help the patient and medical team, along with the caregivers, put together a care plan.
For instance, if the caregiver is unable to drive and the medical team expects the patient to receive out-patient treatment, then part of the plan is to find community resources—or other caregivers—who can get the patient to the treatments. As I say, another name for this would be care management. Does your loved one’s medical team offer something like this? If you’re struggling to overcome gaps in the care your loved one needs, start asking questions as to what’s available and be sure to make it clear that when you talk about palliative care, you’re talking about care management, not just pain management.
The new wrinkle in advance directives, in California and a handful of other states, is something called a POLST (Physician Orders for Life-Sustaining Treatment). It’s meant to make the issue of emergency treatment less murky. Some patients have a DNR (Do Not Resuscitate) order, but if they have a medical crisis and are rushed to the emergency room, unless that order is pinned to their clothes, it may not be honored because the emergency medical people won’t know it exists. Even when the order has been entered into the hospital’s data base, you can’t be sure it will be found during an emergency admittance, or that the patient’s emergency will land them in the hospital where the DNR is on file. And sometimes even with the DNR in hand, it won’t be honored because it’s not in a form that conforms with the hospital’s needs.
A POLST is a doctor’s order, like a prescription for drugs, so it cannot be denied in the states where use of a POLST is approved. It should be carried with the patients always, so that no medical treatment is administered that they don’t want. The criteria for using one is very limited. It’s for patients who’ve been given a terminal diagnosis, and it must be signed by the patient’s physician and the patient. It’s not a bad idea to have several copies—for the caregiver, alternate caregivers and the physician—to be sure that it can’t be ignored. That would be difficult to do. The one I saw was hot pink.
For more information, see www.polst.org.
Blessings, Joanne

CULTIVATE THE RESILIENT LIFE

2010-10-10T09:12:00.000-07:00

Quick note: Sorry for the delay in posting. My normal day was yesterday (Saturday) and I had a full one. I spent the morning as part of the faculty of a half-day caregiver seminar at my local hospital's cancer center. I spent the evening with the "kids" I graduated from high school with in 1965. Caregiving and aging Baby Boomers. Lots to consider there and I'll be sharing some thoughts and excellent information in the coming weeks. Meanwhile, enjoy the article below. I hope you find something you can use in your caregiving...

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Have you ever noticed how some people “can take a lickin’ and keep on tickin,” as the old TV ad used to say about watches?
Caregiving is demanding, stressful and often full of negative surprises. You can’t control what happens, but you can control your response to it. It’s what psychologists call resilience, and it’s not a trait we’re born with—we learn it.
Here are some suggestions for bringing that “bounce-back” or positive attitude into your life:
· Take on problem-solving one issue at a time. Don’t try to solve all of your problems—or caregiving challenges—at once. Think of building a wall. You do it one brick at a time.
· Choose to be happy. Yes, your patient is suffering, there are significant medical issues to be faced, and frustrations abound. Don’t go overboard, but instead, choose to find joy in small things in spite of the trials you both are facing.
· Release fear in order to make room for hope. Dr. Bernie Siegel says it well: “In the face of uncertainty, there’s nothing wrong with hope.”
· Fit yourself to your circumstances, and not the other way around. Don’t waste time and energy trying to control things that are out of your control. Instead of controlling things out of your control, work on your response to them. Save your time and effort for the things that you do have control over.
· You can choose to be agreeable or disagreeable. Choose a positive attitude instead of a negative one, regardless of your patient’s attitude.
· “Parent” your patient as you did your children. Have a daily plan, but don’t be rigid in following it. If events intrude that impact your plan, then be willing to go with the new circumstances.
· Most importantly, don’t neglect your mind and spirit. Caregiving is overwhelmingly focused on the physical. Make time to feed your mind and soul each day.
Another way of looking at resilience is to ask yourself if you think your life is a glass that’s half-empty or half-full. Learning resilient life practices means that you’ll see it always as half-full.
Blessings, Joanne

WHY PICK JUST ONE?

2010-10-02T08:06:00.000-07:00

As comedian Dennis Miller, “now I don’t want to get into a rant here...”
Last week we noted World Alzheimer’s Day and I point out that all dementia is a problem for our world, not just Alzheimer’s Disease.
This week—and month—my gripe is about breast cancer awareness. Don’t miss my point, I’m not complaining that such a month for awareness exists, it’s just that I think it should be extended to cover all kinds of cancers, and there are a whole lot of them.
I am very sensitive to breast cancer, how it’s treated, and how many women, and men, it kills every year. My mother and sister died of different types of breast cancer. The oldest child of my best high school friend is fighting it for her life as I write.
But I’ve also lost my dad to mylo dysplasia (a blood cancer), an uncle to leukemia and his grandson to kidney cancer. Another uncle died of yet another form of blood cancer, and a dear friend lost his battle with prostate cancer.
As I said, my complaint is not that there’s a week or month in which we turn our focus on the cost of a particular type of cancer and the efforts to find cause and cure for it. My complaint is that we aren’t making that focus wide enough to include all cancers.
Let’s make it a blue (prostate) and pink (breast) cancer awareness month. Heck, get the whole rainbow involved. Oh. Wait. That means gay pride. When did someone pass out official colors and say only certain groups could use them? That could get me going on a whole new rant...
Maybe all of our collective time and energy is better spent on caregiver awareness, which, by the way, is the month of November. That’s a nice match and something to look forward to. Caregivers and giving thanks, all in one month.
However, it is October, so let’s spend this month spreading awareness about all types of cancer.
Blessings, Joanne

THIS WEEK THINK PINK

2010-09-29T09:42:00.000-07:00

If you're a Facebook fan, then you know that this is Face Book Pink for 1 Week for Breat Cancer Awareness. If you want to opt in as a supporter of this particular Face Book cause, then use this link to get tot he page where you can sign up as a supporter.
Breast cancer killed my mother and my sister. You can imagine how important this cause is to me. Even if you don't know anyone who's had breast cancer (hard to imagine), the odds are good that someone in your life will be diagnosed with it. So jump on this band wagon and support breast cancer awareness. It only takes a click or two to do so.
Blessings, Joanne

WHAT ABOUT TRAINING?

2010-09-25T15:09:00.000-07:00

When my sister was to be released from the hospital after brain surgery, one of the nurses said something to her husband and me about cleaning the surgical drain in her head.
That remark brought the hospital discharge process to a halt. Neither he nor I are medical people, we didn’t know what was involved in this surprise requirement, and neither of us, nor my sister, was willing to “wing it.”
So we made it clear we weren’t going anywhere until we’d been shown what to do and were confident we could do it. We were taught, she left the hospital and life continued on.
One of the biggest problems in caregiving is that caregivers are expected to provide a level of medical care to their patients, care they may not be trained to provide. Because we caregivers aren’t trained in any way, providing medical care at home is a significant issue. It can be anything-- cleaning a surgical drain, as Chuck and I were asked to do, changing wound dressings, administering injections, providing and cleaning up after at-home chemotherapy, or even low level physical therapy.
There’s also the issue of moving mobility-challenged patients from bed to wheel chair or walker, into and out of the shower or bath, on and off the toilet, and in and out of vehicles.
If these issues are cropping up in your caregiving, I urge you to find the training that you need, just as Chuck and I did. If mobility is an issue for your loved one, then you face the very real possibility of injuring yourself—back, neck, etc.—trying to help them move. If it’s medical procedures, then the issue for you is your stress levels.
Insisting on being trained is one of the few areas in caregiving where you can exercise some control. So ask for whatever training you need. Ask your loved one’s doctor or other medical team members. If they can’t help ask them to point you to whoever can. Other resources could be the social worker at the hospital or care facility where you loved one is being treated, or even your local Red Cross or other source of first aid training.
This is one area in which I encourage caregivers to be assertive in order to get the training they need. You want to stay strong to care for your loved one, so you don’t need to stress out over required medical procedures or wreck your back. Learn what you need to know. Ask for training in whatever it is.
Blessings, Joanne

TODAY IS WORLD ALZHEIMER'S DAY

2010-09-23T13:29:00.001-07:00

Today, Sept. 21, is world Alzheimer's Day.
My personal belief is that we should make this a day devoted to all forms of dementia, rather than singling out just this one form of it. All dementia is devastating on the patients and their families. All dementia is extremely stressful for the caregivers involved.
Here are some thoughts to ponder from World Alzheimer Report 2010 released today by the Alzheimer's Disease International (ADI) through the U. S. Alzheimer's Association:
It's not a surprise, but it's official now-- dementia affects every culture and economic system on the globe.
Dementai care cost globally consumes 1% of the WORLD's gross national product (GNP).
If the cost of dementia care were a country with its own GNP, it would rank 18th in the world between Turkey and Indonesia.
Care costs and loss of productivity due to the disease and caregivers' time will increase 85% in the next 20 years.
For more information on the report, go to www.alz.org, where there is also a whole lot of information for dementia patients and caregivers.
It's World (Dementia) Day today. Take the time to learn something that will enlarge your understanding of these types of diseases and how they affect patients and caregivers alike.
Blessings, Joanne

THE HEALING POWER OF SONG

2010-09-18T10:04:00.001-07:00

When my sister was dying from breast cancer, I sang to her. I did it because it seemed to sooth her and it made me feel better.
It turns out that singing is really good for us, so it makes sense for caregivers and patients to sing together, whether or not the patient is dying.
There have been a handful of really good books written recently on the subject of our brains and how we process and perform music. One author, Robert Jourdain in Music, the Brain and Ecstasy says that singing moves us out of our “mental wheel chairs.” If that’s the case, then why not sing together?
Before we get to the actual singing part, let me tell you a bit about what happens to us physically when we sing.
First, we get more oxygen, so we feel better than when we’re not singing because we’re breathing more deeply.
Second, we have emotional ties to what we’re singing. At a workshop I was leading at a large church in Birmingham, AL, one of the caregivers brought her mom, who was well into dementia. The woman sat silently, staring at the table throughout my talk. I was making a point about using song as a caregiving tool, so I asked the group to sing What a Friend We Have in Jesus, the sweet old hymn that invites us to take our cares and concerns “to the Lord in prayer.”
The woman sat up, smiled broadly and sang all three verses with us, without needing the word sheets I provided to the participants. As soon as we stopped singing, she went back to staring at the table. I believe the song reached deep into her damaged memory and brought up feelings of love and comfort that were tied to that old hymn.
Third, singing releases chemicals that actually are helpful to our bodies when we’re living with caregiver stress. There’s a whole series of feel-good chemicals like seratonin, our mood regulator, oxytocin, which enables us to bond with people, and endorphins. This last group of chemicals not only help us to feel good, they actually can give our immune system a boost. That’s important because the hormones released when we’re under stress will attack our immune system.
Why not sing with your loved one? Sing what you both like, whether it’s hymns, praise choruses, Broadway tunes, folk songs or classic rock. If you don’t think you sing well, get a recording of what you both like and sing along with it. Trust me, you’ll both feel better.
And if you want to find some of these highly interesting books, look for authors Oliver Sacks, M.D. and Daniel Levitin in addition to Robert Jourdain.
Blessings, Joanne

KEEP YOUR CAREGIVING ON 'TRACK'

2010-09-11T06:47:00.000-07:00

Caregiving is a complicated enterprise, as most of you already know. Just staying on top of the medical appointments and general care while you try to juggle your “regular” life is probably about as much as you can manage.
But caregiving to someone with on-going medical problems calls for you to move into a higher level of care, and that’s where tracking comes in.
One of the workbooks that I’ve created is The Medical Journal, which contains pages for everything from your loved one’s health history to calendar templates so you can track appointments, to lists on which you can track all of the prescription medications, over-the-counter (OTC) drugs and supplements that your loved one is taking.
That drug list is part of the tracking that you need to do to stay on top of the medical issues affecting your patient. And it is crucially important. It’s equally important to be sure that ALL of the doctors have copies of it so they ALL know about ALL of the drugs your loved one is taking. But tracking doesn’t stop there.
The point of this tracking is to provide detailed information to your loved one’s doctors so that they can use it to refine and direct the treatments they are prescribing. Here are some other places where you need to keep track of what’s going on with your patient’s medical treatment:
· Questions between appointments. There’s a page in The Medical Journal to write down the questions that come up between appointments. WRTIE THEM DOWN! I guarantee you will not remember all of them when you get into that examining room with the doctor.
· Observations. This is another between-appointments necessity. The questions page in The Medical Journal can be used for this. These notes track the times when symptoms worsen and when they improve during the day or over the span of time between appointments.
· Logs. This type of page goes further than observations and would be used if your patient is experiencing a severe set of symptoms, such as nausea or pain attacks. Create a grid or spread sheet to record the time of day and when in relation to taking meds these sever symptoms occur. Such a log can help you and the medical team create a system of medication to manage the outbreaks of severe symptoms.
Blessings, Joanne

FACEBOOK, TWITTER AND LINKED-IN

2010-09-04T15:22:00.000-07:00

I border on the techno-phobic, so it's something of a miracle that you can now find additional posts from me on Facebook, Twitter and Linked-In. Look either under Joanne Reynolds, Search for Light or Blueprint for Caregiving. These are very short, but either fun or useful, maybe even both. I put them up Monday through Saturday, so there's always something new for you to look at.
Blessings, Joanne

SAFETY FOR DEMENTIA PATIENTS

2010-09-04T15:21:00.000-07:00

Mary posted a question to an on-line caregiver group that I want to share with all of you:
How do I keep my parent, who’s suffering from dementia, safe while I’m at work?
Here are some suggestions from the Alzheimer’s Association brochure, Staying Safe:
• Be sure to have working fire extinguishers, smoke alarms and carbon monoxide detectors in the house. Test them regularly.
• If you are out of the home during the day, use appliances with an auto shut-off feature, such as coffee pots.
• Install a hidden gas valve or circuit breaker on the stove so your loved one can’t turn it on. You can also consider removing the knobs when you leave the house.
• Store grills, lawn mowers, power tools, knives, firearms and cleaning products in a secure (that means locked) place.
• Discard toxic plants and decorative fruit that may be mistaken for real food.
• Store medications, vitamins, and other dietary supplements in a locked cupboard. Remove sugar substitutes and seasonings from kitchen tables and counters.
• Supervise the use of tobacco and alcohol. Both may interact dangerously with your patient’s medications.
More than 60 percent of dementia patients will wander. The danger is that they can become lost and die before they’re found. The Alzheimer’s Association recommends the use of their MedicAlert-Alzheimer’s Association Safe Return program. There are other, similar programs available, which you can find on-line.
Even if your dementia patient is equipped with one of these tracking devices, prevention is still the best plan:
• Short term memory loss can cause anxiety and confusion in a place that’s large or contains lots of people, such as the market, a theater, a shopping mall or sports venue. That confusion can cause patients to wander off in search of something that will quiet their sense of panic. The best strategy is to keep away from places that will induce this behavior.
• Be on alert for wandering if your loved one wants to “go to work” or “go home,” if he or she is restless or has a hard time locating familiar place in the home such as the bedroom or bathroom.
• Other ways to prevent wandering include placing deadbolt locks on exterior doors either high or low, and controlling access to the car keys (see my earlier post THE DRIVING THING).
One of the best things you can do when your patients are showing signs of anxiety which may lead to wandering is to give them plenty of assurance that you will not leave them alone. Try distracting them by giving them repetitive tasks, like folding laundry or helping prepare dinner.
Keeping your dementia patient safe is really a matter of being aware of their reactions and anticipating problems before they actually occur.
Blessings, Joanne

END-OF-SUMMER-SALE!

2010-08-28T14:18:00.000-07:00

How would you like to receive a copy of my book, Search for Light: Ten Crucial Lessons for Caregivers and your choice of one of the BLueprint for Caregiving print-out CDs all for just $25? This is a $45 package and normally would include an extra charge for shipping and tax. It's yours for $25 if you order before Oct. 1. Just go to www.blueprintforcaregiving.com and click on the End of Summer Sale button. Be sure to specify whether you want Blueprint for Cancer Caregiving, Blueprint for Dementia Caregiving, Blueprint for Elder Caregiving, or the general Blueprint for Caregiving.

CHOOSING A CARE FACILITY

2010-08-28T14:15:00.000-07:00

Aunt Florence was recently widowed, and wanted to stay in the home she’d shared for more than a decade with her second husband. It was isolated and more than two hours drive from her two nephews. (Her own children had disowned her at her remarriage. They would not even discuss their mother’s care with their cousins.)
Then there was the really BIG problem: Florence was clearly suffering from dementia with significant memory loss and paranoia.
In theory, the solution was simple enough—find a care facility for Florence. But she insisted on staying in her home. When she fell and broke her hip, there was no question of her living on her own.
Are you facing a similar dilemma, trying to decide whether to move your loved one, and if so to what type of facility?
Here are some suggestions to help you sort out the choices. They come from Stages of Senior Care: Your Step-by-Step Guide to Making the Best Decisions by Paul and Lori Hogan, founders of Home Instead Senior Care.
You are probably trying to make choices between an assisted living facility (ALF) or a nursing facility.
Generally, people in an ALF require some, but not a lot of assistance. In a nursing facility, people like Aunt Florence need more supervision and medical assistance. ALF residents have a greater degree of independence than in a nursing home. For the most part, they live in small apartment-like units and are free to set their own personal schedules as they decide.
• In both types of facilities, patients are not allowed to be in charge of their own medications. Those are handled by the staff whether or not the patients are capable of handling them own their own. This even applies to supplements like vitamins.
• In either of these setting there are opportunities for social interaction and plenty of activities to help keep residents’ minds active. It’s a benefit of moving your loved one away from an isolated existence at home.
• Safety is another reason for choosing a care facility over staying at home. Falls, like Florence’s, and emergencies with utilities are all reasons to consider moving your loved one out of his or her home.
• Cost is an obvious problem. Be sure to ask at the facility you’re considering what is included in the monthly fee and – most importantly—what is not. Does your loved one—or you—have the financial resources to stay in a care facility over a long period of time?
• Are you prepared for the downside, such as anger and resentment on the part of your loved one at being moved, perhaps against his or her wishes? An ALF with its small apartments and nursing facility with one-half of a two-bed room don’t allow the patient to bring many possessions with them.
In theory, it’s a good idea to have your loved one’s approval to move him or her to one of these types of facilities, but in reality you may never receive it. Perhaps the better question to ask is about your ability to continue to provide care and keep your loved one safe and comfortable in the home. Try to see the issue from the perspective of your health and well-being as well as their comfort and safety.
Finally, be sure to spend time picking the right facility. Visit more than once and spend time observing how the staff members interact with their patients. Note sights, sounds and smells. Keep in mind that there is a wide range in quality of either type of facility.
Blessings, Joanne

INFORMATION SEARCHES-- GOOD, BAD & UGLY

2010-08-21T15:09:00.000-07:00

I just spent an hour on-line looking for resources cited in a recent article on caregiving. It wasn’t pretty. Only two of the six sites listed could be located with the URL (site address) provided. I spent a whole lot of time and energy trying to find the other four.
Have you found yourself in this frustrating circumstance lately?
Caregiving can be tough enough on its own. But sometimes it feels like you’ve run into a brick wall when trying to find support for yourself: a respite volunteer so you can take time off, information on your patient’s disease or condition, or simply resources that are available in your community or region.
There are resources out there, it’s just a matter of finding them. And that’s the problem. Caregivers are not overburdened with free time, so endless mining expeditions to find a source of help becomes counter productive. When you’ve got limited time, you’re not going to waste it on web searches or phone calls that only lead to more web searches or phone calls.
What follows are a few details of my searches, with the end results, which can save you caregivers precious time:
I started by looking for the federal PACE program (Programs of All-inclusive Care for the Elderly). I know it comes through the federal Health and Human Services Department, but there was no website for it, just references to press releases, government documents and Congressional testimony about it. I finally found the site, which is www.npaonline.org. It’s the National Association of PACE, and it has a state-by-state listing of programs that are available. But that site has no direct links to those local programs. You still have to dig more to get the information that applies to you.
The same problem exists with the Area Agencies on Aging, which exist to support caregivers of elderly patients. They are in every community in the U. S., but not necessarily under that name. You have to go to www.n4a.org (the Association of Area Agencies on Aging) to find your local agency.
The article that launched all this searching also mentioned The Eldercare Locator, and it gave a long and complex URL, which failed to open the hoped-for page. There are two ways to find this important resource. You can go through www.aoa.gov (Administration on Aging) go to the Programs tab and then Eldercare Locator. Or you can go directly to www.eldercare.gov.
One really terrific site if you’re looking for local resources is through the Family Caregiver Alliance at www.caregiver.org. It’s a busy website, but look for the map of the U. S. that’s labeled Family Caregiver Navigator for a state-by-state list of resources. Another easy-to-find program is Meals on Wheels. It’s at www.mowaa.org. This is a huge program that operates across the country, but, unfortunately not every community has one.
I hope my time spent on these searches can benefit you in your caregiving by providing you with shortcuts to resources and services that will support you and your patient.
Blessings, Joanne

THE DRIVING THING

2010-08-15T12:20:00.001-07:00

Three women waited patiently for their respective turns to talk to me following a workshop this summer. As it turns out all three had the same dilemma-- what to do, if anything, about taking the car keys away from aging parents.
For one, it wasn’t the fact that her Dad was coming up on his 99th birthday and still driving. It was that she felt her Mom was asking him to “drive more than he should.”
For another, it was the emotional issue of role-reversal in taking away Mom’s driving privileges—the child becoming the parent.
For the last one there was no doubt or hesitation about what needed to be done, her question was how to do it.
This is one of the questions I hear regularly in my workshops as I travel around the country. It’s a tough one to solve because there is so much emotional power tied up in the independence of being able to drive. The issue is further complicated when the person in question lives in an area where public transportation isn’t good.
If this is your caregiving dilemma, it may help you to pull the problem apart into bite-sized pieces:
• First step—determine if your parent’s driving is hazardous. Do they drive too slow or too fast? Do they have trouble reading street or traffic signs? Have they recently side-swiped other cars or been in fender-benders? While these little accidents aren’t big concerns, they may be a tip-off that your parent’s vision isn’t sharp enough for them to drive safely. If you don’t want to be set up as the judge of your parent’s driving ability, contact an Occupational Therapist (OT) and have him or her conduct a driving ability assessment.
The pitfall to avoid is having the mind-set that even though Mom or Dad’s driving isn’t good, “They only go to the store/church/library/doctors, and they know the way so it’ll be OK.” Release that thought. Driving skill is either there or it’s not. If it’s not, then they shouldn’t be driving.
• Next step—talk to them about how they feel about their driving skills. They will probably acknowledge that it’s not perfect, but will insist that it’s adequate. That OT assessment can come in handy if the test results were poor, but your parent thinks his or her driving is still safe. If they still insist they’re OK to drive, then check with your local Motor Vehicle Department office to find out what kind of help you can expect from them. Some states will revoke a license upon request by a physician. Can you get such a request from your parent’s doctor? Some states require regular driving tests when a person reaches a certain age. Others will ask a driver of a certain age to be tested if someone requests the test.
The pitfall is that among these states, some will disclose to the driver who’s being tested the name of the person who turned them in. This can cause problems if you’re the informer.
• If the authorities are not going to help you take the keys away, here are some ideas:
Contact their auto insurance company and let them know about the problem. They may revoke the insurance, in which case Mom or Dad cannot drive while un-insured, or the cost of it will become prohibitive.
Disable the car. This only works if the driver isn’t sufficiently familiar with the car’s engine and can’t spot the sabotage. Tell them there’s a delay in finding the part that’s needed, and while this is going on, help them to adapt to a new mode of transportation. By creating a new habit in place of the old, they may give up on wanting to drive.
If the issue is dementia, try removing the car in an out-of-sight-out-of-mind plan. For these folks, once the car is gone from their physical presence, it may eventually fade from their consciousness all together.
Remember, the problem to be solved is to keep Mom and Dad safe, not to engage in a contest of wills. Approach the problem from the safety point of view and you may be able to elicit their cooperation in willingly giving up the car keys.
Blessings, Joanne

SHARING THE CARE LONG DISTANCE

2010-08-06T09:10:00.000-07:00

Judy’s mom lives out of state, and is in failing health. The good—and bad—news for Judy is that her mom is living in a “Granny unit” apartment above her sister’s garage, so care is literally steps away.
But Judy suffers from guilt because she’s not the one carrying the burden of her mom’s care. “I call once a week, and sometimes I have to bite my tongue to keep from offering my ‘brilliant’ advice. I know my sister’s in it every day and probably has thought of or tried all the things I want to suggest. I just don’t think she’d take it very well if I wade into these issues from 1,500 miles away,” Judy says.
The same issue arises when Judy goes to visit, only it has a bit of a twist. Judy does not want to come off as “the outsider arriving to save the world,” but she has begun to realize that her mom puts on a show of being stronger and healthier than she really is when Judy’s visiting.
The bottom line is that no one really is saying what’s true. Judy keeps her advice and concerns to herself, her sister isn’t talking about her real levels of caregiver stress, and mom is trying to convince Judy that she is well when she isn’t.
It’s not an unusual circumstance for caregivers and patients in this long-distance situation. And it’s tough on everyone. University of Colorado gero-psychologist Sara Honn Qualls likens these situations to having the family members thrown into the middle of a nuclear reactor and told to figure it out before it blows up.
What’s the family to do to prevent caregiver burnout on the part of the sister who’s in charge of mom, and complete withdrawal by Judy?
Communicate. It’s that easy and that difficult.
At a recent workshop I encountered a man who was caring for his wife who has dementia. His four sons all lived outside their hometown. But they phone him on a conference call once a week to find out how their mom is doing, and how he is doing, too. If he needs a break, he has learned to say so, and the four sons figure out who can come to relieve him for a weekend.
The lesson from this is that caregivers need to talk honestly with the other family members about what they want and need. And the family members need to pay attention to these conversations. They may not sound as if the caregiver is desperate, but if the subject comes up, the remote family members should assume there is a level of need that requires help.
Sometimes it may just simply be to let the caregiver-on-site vent their feelings. It may not be easy to hear how frustrated or angry your sibling is, but they need to be heard, so your job will be to listen, resisting the urge to tell them how they could do the job more effectively. If they ask, go ahead and venture an opinion, but otherwise, do as Judy does and keep those “brilliant” ideas to yourself.
As I’ve said before, sometimes family history is too imbedded to allow for the level of communication that’s needed in caregiving. That’s when you need to find someone—a therapist, a counselor, a clergyperson—who can mediate the discussion.
“Sometimes, it’s all we can do to simply acknowledge that it’s ‘family stuff’ that makes us do what we do,” Judy says. “But even that helps. It’s better than having our family blow apart trying to care for mom.”
Blessings, Joanne

TIPS FOR FINDING A NEW DOCTOR

2010-07-30T14:42:00.000-07:00

In my last post, I talked about when it’s necessary to find a new doctor for your loved one.
Some of the reasons people decide to change have to do with who’s going to have control over the medical decisions—the patient and family on one hand, or the medical team on the other.
But there are other reasons for changing doctors, such as lack of a bedside manner. I was not at all fond of my dad’s and sister’s oncologist. I found him abrupt and inattentive to them during office visits when I came along as the second set of ears. He rarely talked to them, but instead seemed to bark out orders like a drill sergeant.
However, he was a very highly regarded physician with an impressive success rate. So they stayed with him in spite of his poor communication and patient-care skills. You and your loved one may not want to put up with that kind of behavior.
If you’re going to make a change, here are some questions to consider—and ask—to decide if there’s a good match between patient and medical team:
• What’s the physician’s background? This includes education, board certifications and professional history. Don’t be shy about checking for disciplinary actions and patient reviews. The Internet is a great source for these.
• What’s the office routine? How many patients are booked in an hour? What’s the call-back policy during and after office hours? What are the office hours? What are the billing procedures and which insurance policies do they take?
• What’s the doctor’s philosophy of healthcare? Will he or she work with you as a healthcare consumer, taking time to answer all of your questions? Things to discuss include alternative/complementary medical practices, whether or not the practice offers multiple treatment options and how minimal/maximal are the treatments they offer. Ask about inclusion of information about the patient’s emotional state as part of the examination process. Also ask how involved the doctor is willing to let the caregiver be.
• Most important is that subjective way you and the patient feel about this doctor. Do you like him or her? Do you feel like you are being listened to? Are you comfortable with him or her?
Finally, you need to ask yourself if this new medical practice fits the family’s practical needs. This can include considerations such as office hours and your ability to get the patient to appointments during your work hours, location, and accessibility in terms of things like public transportation and parking.
When you leave the first doctor, be sure to get copies of as much of your patient’s file as that practice will release. Certainly you’ll want copies of test results, scans, and diagnoses. Do not assume that your next physician will be able to get those items from the one you’re leaving.
Finding the new doctor may take some time and perseverance, but it will be worth it because of the improved level of communication and care.
Blessings, Joanne

WHO'S IN CHARGE-- PATIENT OR DOCTOR?

2010-07-24T14:24:00.001-07:00

“Why are you people asking so many questions?”
The query was made with a high level of hostility that caught the elderly patient and her family by surprise.
They were asking questions out of concern that the shingles she’d contracted more than a year earlier were not responding to treatment. They were asking questions because of their concerns about the patient’s mental acuity and the amount of pain-killing drugs she was taking.
They were asking questions because they wanted to make informed decisions about the choices facing her.
And it sounded to them like the doctor didn’t want the family to involve themselves. He’d had complete control of the patient’s treatment for more than a year, and apparently wanted it to stay that way.
What would you do in this situation-- quit asking questions, or find a new doctor, like my friends did?
Why ask questions? Because the patient, and to some extent the patient’s caregivers, are supposed to be in control of the patient’s body. It’s a delicate balancing act between the patient, the family caregivers, and the medical team. But in the end, the power and authority rests with the patient. If he or she is mentally incapacitated, then that authority rests with whoever has been designated through advance directives.
Doctors advise, they recommend, but they cannot command. And they certainly should make space for questions, whether or not they like answering them.
If you and your loved one find yourselves in this kind of situation, I highly recommend that you take action to gain—or re-gain control. Question-asking is a necessary role for both patient and caregiver. If the doctor doesn’t like answering questions, find out why:
Is it a time issue? Perhaps the physician has a staff member who can be designated to answer questions.
If time is not a factor, then what’s the real problem? It may be a personality clash. Or it may be the doctor doesn’t like the idea of being “merely” an advisor. And that may be an un-resolvable problem.
I know it’s very hard to contemplate leaving the doctor who’s been treating your loved one, but if you’re in a struggle with him or her to get basic information, or to assert any control over the decision-making process about treatments, then you and your patient should seriously consider leaving that doctor in order to find one who will work in cooperation with the patient and family.
It’s a difficult thing to do, but sometimes it’s the only choice to make for the well-being of the patient, and those question-asking family members.
Stay tuned for more on this topic. In my next post I’ll give you some ideas for when you need to find a new physician.
Blessings, Joanne

5 IDEAS FOR ELDER CAREGIVING

2010-07-18T06:23:00.000-07:00

The woman who sat in the front row of a recent workshop was about my age and under a load of caregiver stress from caring for both her mother and mother-in-law. Both women had suffered a series of broken bones from falls in the past two years.
“How do I deal with the frustration and then the guilt? More importantly, how do I get them to stop fighting me and use their walkers?” she asked.
There’s no easy answer to those questions, but I think it helps in elder caregiving if you, the caregiver, can keep some general principles in mind. In fact, these principles apply to all kinds of caregiving (For more information, go to www.blueprintforcaregiving.com):
1) Things will change. What was true yesterday about their well-being and abilities may not be true today.
Strategy for caregiving: As you track the changes, day-to-day, try to keep in mind that a failing body does not always mean a failing mind. Base your caregiving in love, honor and respect, which means using “I” language instead of “you” words. If you want them to use a walker, for instance, tell them the truth about how you feel: “I will feel better if you’re using the walker because I will know that you’re as safe as possible.” Steer away from statements such as “You have to use the walker.”
2) There is no getting better. Amelioration can happen, but not cure.
Incorporate new ways of living into old routines-- holidays, birthdays, how to combine old traditions with new lifestyle. Talk about it!
Strategy for caregiving: When possible, allow your loved one to give to you, not just be a recipient of your care.
3) Understand the losses. Being the last one of a group of family and friends is hard. Who knows your loved one from childhood, school, work days before your arrival? You also need to understand that the ability to make new friends declines.
Strategy for caregiving: Work for family connection-- turn off the TV, spend time playing games, reading, singing together, go through photos and mementos. Mix the power of touch with memory.
4) Keep the big picture in focus. This is hard to do when you’re tending to the day-to-day needs. Be attentive to larger, over-arching issues.
Strategy for caregiving: Recognize and respond to quality-of-life questions, which may be disguised as seemingly minor medical concerns. Is it a good idea to have your elderly parent undergo surgery for eye problems, or skin cancer?
5) Plan to say good-bye. Have you and your loved one talked about advance directives or The Five Questions?
Strategy for caregiving: Visit www.caringinfo.org or www.agingwithdignity.com for help with conversation openers and needed documents.
I hope these principles will help you to continue caring for your loved one with a minimum of frustration and the stress that comes with it.
Blessings,
Joanne

PICK YOUR STAGE SETTING

2010-07-11T07:03:00.001-07:00

The Five Stages of Grief, first outlined by psychiatrist Elisabeth Kubler-Ross in her 1969 book, On Death and Dying, are important for caregivers to know about. They set the stage on which you and your patient are living.
Rather than give you the academic description—which you can get in my book, Search for Light: Ten Crucial Lessons for Caregivers, I want to tell you the story of a caregiver I met a little while ago in a dementia caregiver support group. (If you want more information about the book, please visit www.blueprintforcaregiving.com.)
The woman was in her 60s and came to the group for the first time with her adult daughter. The daughter gave us her name, said her dad has recently been diagnosed with dementia, and then turned the discussion over to her mom.
The mom told us several things, which illustrate three of the five stages.
First, she said that she didn’t believe that she or her daughter needed to be in the group as she was sure her husband would be cured of his dementia. That’s denial of the reality of the medical circumstances, the first of the five stages.
Next she said that she was really “mad at” the group’s sponsoring organization and all the money they were “wasting” on the brochures they’d given the family. “That money should be spent on finding a cure,” she declared. That’s denial wrapped up with anger, the second of the Kubler-Ross stages.
The woman concluded by telling us that she knew her husband would be cured because she’d been saying prayers to a particular saint everyday so that the cure would occur. That’s bargaining, the third stage.
The problem with these stages is that by living so deeply immersed in them, the woman was preventing herself and her family from making the changes needed in order to make room for the new reality of their lives. As anyone who’s been a dementia caregiver knows, that’s a really tough reality to take in and live with. Still, as the members of the group assured the woman, her life and her family’s had changed and they needed to shift their outlook to live with the new reality.
For the record, the five stages are denial, anger, bargaining, depression and acceptance. These stages don’t pertain only to those who are dying. They occur any time there’s a significant change in someone’s life, in little deaths such as end of a relationship, a move to a new community, or a life-changing illness. You need to keep in mind a couple of principles about these stages:
· We don’t move through them together, or even in order. We bounce around in them.
· They affect patient and caregiver, and all who are close to the patient.
· Patient and caregiver move through them at different speeds and levels of intensity. Your point in the five stages will not mirror your loved one’s nor they yours.
My point in telling you the story and talking about the stages is to alert you to the existence of the five stages and how they play out in your caregiving. Think of them as different sets on the stage. It will help you to feel a little less crazy—not to mention stressed—if you can recognize how they affect you and your patient.
Blessings,
Joanne