The Zen of Caregiving

Book Review: SPEAKING OUR MINDS by Lisa Snyder

There are many books out there about Alzheimer’s and how to care for those suffering from the disease.  SPEAKING OUR MINDS is different because it is a collection of reflections by a group of individuals who actually have Alzheimer’s. 

Lisa Snyder is a caring, insightful researcher who knows how to listen to people with empathy and compassion.  To produce this book, she interviewed seven men and women of various ages and ethnicities who had accepted their Alzheimer’s diagnoses and were willing to talk about their experiences.  Naturally they were all in the earlier rather than the later stages of the disease, but they all admittedly had had symptoms for several years before Lisa spoke with them. 

After an initial interview, Lisa was able to return again after one or more years had passed to see how these patients were faring as the disease progressed.  Thus, we readers get a broad and varied perspective on living with Alzheimer’s.  And while some aspects of the disease are similar for everyone, such as the loss of short-term memory, the specifics vary from individual to individual. For example, one woman was upset because she could not keep up her end of the housework, like sewing and ironing.  "Anyone who can iron a white shirt," she said, "can't have Alzheimer's disease!" (p. 19)  One of the men, on the other hand, was horrified to lose his verbal skills and ability to spell. 

In many ways, this is a heartbreaking book.  As one of the patients said, “My advice to people with Alzheimer’s is don’t have it! (p. 73)”  Yet I found the stories reassuring in a way. These people were not saints.  They were angry and frustrated at what their disease was costing them. Yet each of them, along with help from their families, friends and local institutions, tried to make as good a life as possible under the circumstances.

Lisa Snyder is a clinical social worker at the Alzheimer’s Disease Research Center at the University of California in San Diego. One of the best things to come out of her interviews with patients, in addition to this book, was the forming of a support group where Alzheimer’s patients could share their stories with each other. As a firm believer in the benefits of support groups, I can imagine how important such a group would be. 

SPEAKING OUR MINDS was a hard book for me to read.  It was also an easy book to read.  I could not put it down once I’d started.  I had to hear each person’s story.  Their voices unlocked the door to a frighteningly dark place and illuminated it for me.  I thank them.

For Loved Ones with Short Term Memory Loss, Put It in Writing

Communicating with loved ones who have short term memory loss is difficult and frustrating. If you tell them you will visit tomorrow at three p.m.; that they should brush their teeth in the morning; or any number of things you want them to remember, your words may fly away before they can be acted upon.  This is one reason it is recommended that signs be used in the homes of those with Alzheimer’s and other forms of dementia.  Reminders of what is in a cupboard, a list of phone numbers near the telephone, or a sign identifying the bathroom, can be extremely helpful.

Beyond the obvious signs and directions, consider putting into writing anything you want your loved ones to think about or refer back to.  A letter they can read and reread many times may be extremely effective in those instances where speaking to them directly cannot.  When my father suffered from worsening short-term memory loss after my mother died, my brothers and sisters and I thought he should no longer be living alone.  Several of us talked to him about this idea on the phone or when we visited him in Florida, but none of us lived nearby. 

My father always said to us, “I like living where I am.  I want to stay here.”  But there were more and more signs that he was no longer safe living by himself.  After I found an assisted living facility near me in Ithaca, New York, that I thought he’d be happy at, I wrote him a letter outlining all the reasons he should move here.  I wrote one page of strong but simple arguments, stressing the positive benefits such as being closer to children and grandchildren, having his cooking and cleaning done for him, etc.  I closed by saying all his children agreed it was the best thing for him to do.

The next time I talked to him, Dad said, “I’ve got this letter here I’ve read twice now, and if I read it again that will make three times.”  Of course he’d probably read it many more times than that, but each time it must have seemed almost new to him.  He had a chance to ponder the contents and deal with the issues in his own way in a relaxed manner without having to immediately respond to us.  By the time I talked to him on the phone, he was ready to agree.

I used letter writing a number of times with my father in order to help him with his relocation and to reassure him about where he lived, where his children were, and so forth.  We also made lists for him and sent him letters and cards he could read and reread.  All of it was comforting, I believe, and helped us to communicate better.

When their short term memory starts to go, help your loved ones to make better use of whatever other skills are available.  If Mom or Dad can still read with comprehension, put everything you can into writing so they can have the benefit of this input in addition to your spoken words.  You might be surprised at how much easier and more successful your communication with them becomes.

One of the scariest things we can face as we get older is losing our mental abilities.  Your loved ones dealing with memory loss must also deal with the shame and humiliation that often accompanies such loss.  By assisting their communication and navigation through the written word, you help them function better and help maintain their sense of self-worth and independence.

Consider putting it in writing when you have important things you want your loved ones with dementia to think about, or when you’re trying to convince them to take a particular plan of action, like moving out of their home.  If they are having trouble putting names to faces, make a scrap book with photos listing names and other important information about each person.  Put up signs, label the contents of drawers and cabinets.  Make it easy for them to know what’s going on in their environment without having to remember.

Caregiving: Sometimes It's the Blind Leading the Blind

My husband Adrian is 79 and I am 64.  This age difference, plus the fact that I have always tended to be more organized than he is, means that I manage his health care.  I make the doctor's appointments, attend these visits with him, take notes, ask questions, and make sure he follows the doctor's orders when we get home. 

Lately this plan is not working as well as it used to.  Yesterday I reminded Adrian that he had an appointment with the allergist at 1:45. I told him there was enough time for us to have lunch first, and then after we ate, I drove him to the doctor's.  As we were signing in, the receptionist said, "Oh, you had a 1:45 appointment." 

"Right," I confirmed.

"But it's now 2:45," she answered.

"It is?"

I was astounded.  What had happened to that hour?  We have a clock in our kitchen, and I wear a watch.  Of course, the watch does not have actual numbers on it, but rather four small marks to deliniate the hour, quarter past, and so forth.  Maybe it was time to pass this piece of jewelry on to my daughter and purchase a more practical watch?

My organization skills are slipping, my memory is slipping, and yet I still feel responsible for managing our lives.  Adrian never looked at his own watch to see if we would be on time for his appointment, because he knows that I take care of those things.

Sometimes I wonder who is slipping faster.  Adrian worries about his forgetfullness and is fearful of getting Alzheimers, because his own mother died of it at 83.  I always pooh-pooh his concerns, telling him he's no more forgetful than anyone would be at his age.  "Panicking because you can't remember something only makes it worse," I tell him.  "It's no big deal."

But my memory loss is a very big deal.  What if I forget something REALLY REALLY important?  I'm not panicking, though.  At least, not yet.

Taking Charge - A Balancing Act

I like to think I'm in charge of my life, no matter what problems I may face.  I don't think of myself as a victim or a patient, even when I'm sitting in the doctor's office.  This attitude, I think, has helped me to be more successful in managing my bipolar disorder, in being a better caregiver, and in general dealing with whatever life throws at me.

When I was a young college student, a friend of mine complained that her parents were trying to run her life.  "I'm not living at home anymore," she said, "so why do they keep trying to tell me what to do?"

"As long as they're paying the bills," I answered, "they're going to think they have that right."  Becoming independent, I knew then, meant becoming financially independent first.  Perhaps there are parents out there who dole out money freely without asking for accountability, but I'd bet they are in the minority.

Being financially independent is just one step in taking charge of your life.  Another is to take active responsibility for your problems.  If your car breaks down, for example, and you take it to a mechanic who does a lousy job, you don't keep going back to the same place.  You find a new mechanic.  You realize that sitting around wailing about how the original mechanic should be better at fixing your car is a waste of time. 

Yet I see people sitting around wailing about how their medications don't work or their doctors aren't helping them.  They have a passive patient mentality, plopping themselves in their doctor's office and begging, "fix me," then waiting for the results.  This attitude has even been encouraged by the medical model in our society which presents doctors as the dispensers of cures and patients as the passive recipients. 

Fortunately this attitude is changing.  People are doing their own research on what ails them, and using their doctors as expert resources rather than gods.  We are taking charge of our own cures.

Feeling independent and in control of my life is something I prize, yet when I became a caregiver for my father, I forgot that he needs to feel that way, too.  My knowing what was "best" for him, or being able to more efficiently run his life, didn't negate his need to feel in charge.

When Dad would refuse to change his dirty clothes or wear a warmer jacket on a cold day, I'd feel frustrated.  Why won't he do what I tell him to, I'd think, when I'm just looking out for his best interests?  Because, dummy, we all need to feel independent and in control of our lives!

So it's something of a balancing act--keeping the person in your charge safe from harm--yet allowing them all the freedom and independence possible under the circumstances. 

Nursing Home Neglect: Can We Trust the Institutions We Rely On?

Recently New York State's attorney general, Eliot Spitzer, had nineteen nursing home employees arrested after patients in two nursing homes were supposedly left in their own waste while staffers watched movies.  A number of nursing homes were and are under investigation, and the attorney general's office now offers a report to help patients and their families evaluate staffing at homes statewide.  You can find it on the office of the attorney general's website.

One of the biggest fears of caregivers is that staff at the nursing home, assisted living facility, or hospital that is taking care of our loved ones are neglecting or abusing them.  We cannot be there twenty-four hours a day, so we need to trust them to do what is right.  The worst thing we can imagine is a staffer who simply doesn't care, or worse, is a sadistic abuser. 

Fortunately, I think most staffers at these institutions are well-intentioned.  But that fact won't always save our loved ones from neglect.  Too many of these institutions simply don't have enough staff to adequately monitor patients and residents.  Complaints I heard about a local assisted living facility included making wheelchair bound patients wait too long for assistance in getting to bed at night or getting up in the morning; not having enough staff to serve at mealtimes; and not having a nurse on duty at night. 

In one of the nursing homes my father lived in, the dementia ward was woefully understaffed.  Naturally that ward was the least favorite choice for staffers to work in because the patients were much more difficult to deal with, and they often did not respond positively to the help they received.  Often, the institutional solution is medication: they dope up the difficult patients to make them "compliant."  I think my father died a lot sooner than he might have because of the meds he was given.  He turned from an active, physically strong person who walked on his own, into a sedentary vegetable. 

I'm not sure where the blame belongs, but we need a way to ensure adequate staffing and staff training at all the institutions we rely on to take care of our loved ones when they can no longer care for themselves. 

Support Groups: How to Make the Most of Them

Over the past six years, I have belonged to two support groups, and they’ve both been helpful in different ways.  In my bipolar support group, I was one of the sufferers, though our group also welcomed family members and friends.  My Alzheimer’s support group was for caregivers of those with Alzheimer’s or other types of dementia.  Both groups helped me immeasurably.

If you are thinking about joining a group or starting one in your community, here are some tips on what to expect and how to get the most from your group.

Sharing Your Story and Problems:

Other than hiring a therapist, a support group offers the perfect place to talk about ourselves and our problems.  We’ll be with people who are going through the same things we are.  They know what we mean when we talk about sleepless nights, depression, anxiety, guilt—whatever it is we’re suffering at the moment.

In my bipolar support group, there are many varieties of experience because no two people suffer the exact same set of symptoms and responses, but we have enough in common to understand what the other person is going through.  In my Alzheimer’s support group, members can understand what it’s like to care for a father or mother with dementia on a day-to-day basis better than another family member who might visit twice a year. 

The flip side of telling your own story, of course, is respectful listening to other people’s problems.  This is a gift we offer each other in support groups.  We listen with empathy.  We respect others’ point of view, acknowledge their emotions, and allow them to express whatever it is they are feeling.

Getting and Giving Advice:

Support groups are a great place to get advice from those more experienced than we are, and to share our own experience when it’s called for. In my Alzheimer’s support group, we shared information about medications, assisted living facilities, home health aides, and nursing homes.  Some of us were caring for our relatives at home, while others were supporting them in local facilities, depending on the stage of the disease.

In my bipolar group, we freely talk about the medications we are taking, the side effects we experience, and the benefits or lack thereof.  Our group is in a small city, so we also offer advice about local psychiatrists and therapists, if a member asks.

The key to giving advice in a support group is simple:  only give it when it’s asked for.  Sometimes members just want to vent their feelings and to explore their situation out loud to a group of supportive listeners. Very often, we can’t really solve another person’s problem, but we can listen attentively. 

If you’re not sure whether to give advice or not, it’s best to simply ask.  After you’re in a group for a while, however, you’ll usually get a feel for when it’s appropriate and when not. 

Respecting Differences of Opinions and Philosophies:

Think of a support group as a place to share ideas while respecting differences.  One member may be a believer in alternative medicine.  Another may think faith is the best cure. One night at my bipolar meeting, a new person said aggressively that everyone, without fail, should be cured through mainstream medicine.  She got very upset when other members expressed different points of view.  An argument ensued, and the new member never came back.

One of the benefits of going to a support group is to hear different experiences and opinions.  You don’t have to follow anyone else’s advice, but it is important to listen respectfully to all. 

Along with listening and sharing is the necessity for confidentiality.  In order for everyone to feel free to speak what’s on our mind, we have to be confident that what we say in that room will remain there. 

Most groups have a list of principles and procedures they follow, even if the list is understood rather than part of a written or stated document.  Regular members will sometimes revisit this list and revise it when necessary.  In my bipolar group, we had a problem with one member who monopolized the conversation, so we instituted some simple rules about timing in order to give everyone a chance to speak. 

Support groups take some effort to maintain, and usually there are one or two people who take responsibility for this.  Some support groups are sponsored and run by a paid facilitator, as our Alzheimer’s group was.  Others, like my bipolar group, are run by the members.  Several of us take turns facilitating, and we share the administrative tasks like notifying the newspapers to list our meeting times. 

As you become more familiar with your group, you may want to share in its administration.  Over time you may also find, as I have, that your group is not only a source of comfort and advice, but lasting friendship as well.