Alzheimers Disease and Us

About four years before I came to this church, I actually found the need to go looking for a way to volunteer for a worthy cause. Today, as a fairly active member of this congregation that seems remarkable to me, as volunteer activities now seem to be all around me. But back in the late 1980s, I went looking, and I choose the Alzheimer's Association. I served as a member, and later president, of the Board for the Alzheimer's Association of the Greater San Francisco Bay Area. Today, after the consolidation of a number of chapters into one large regional group, I am once again on the Board, this time for the Alzheimer's Association of Northern California and Northern Nevada. As a result of being on the Board, I have learned some of the basics about this disease.

I have learned that Alzheimer's disease is a progressively degenerating brain disorder that results in dementia, the loss of our cognitive abilities--thinking, reasoning, remembering. Dementia is not a disease in and of itself; it is a whole set of symptoms and is associated with many kinds of physical conditions, including strokes, Parkinson's disease, Huntington's disease, Pick's disease, AIDS, meningitis, syphilis, some brain tumors, some thyroid problems, some drug reactions, depression, and even a vitamin B12 deficiency.

All that being said, Alzheimer's is by far the most common cause of dementia. The numbers we use indicate that today's 4 million Americans who have Alzheimer's Disease will become at least 14 million by the year 2050, unless we can find a cure or preventative, and that the disease costs our society at least $100 billion a year. Not surprisingly, the latest findings coming out of the just-completed International Alzheimer's Research Conference in Stokholm indicate the numbers are higher still.

I have learned that there is a rare form of the disease, called Early Onset Alzheimer's, that affects people in their 50's, their 40's, and even their 30's, and that this form of the disease in clearly hereditary (although only about 120 such families have been identified world wide). Late Onset Alzheimer's has a far less understood tie to inheritance. We know, for example, of a genetic link to the apolipoprotein E gene. This Apoe-E gene comes in three forms, called 2, 3, and 4, and we each inherit one of these genes from each of our parents. And it seems that people who inherit two copies of Apoe-E4 have a much greater chance of getting Alzheimer's, but some of them don't get it. And, some people who don't even have one of these genes do get it. So maybe what might be inherited is some kind of risk factor that may or may not ever get turned on. We don't know. The biggest risk factor, of course, is aging. By age 65, nearly one out of ten people is affected, and by the age of 85 that number climbs up almost to one out of two people.

I also know that, next to the federal government, the Alzheimer's Association is the biggest funder of research in the field. We are very proud of that. And today we have four different drug treatments available: Cognex, Aricept, Reminyl, and Exelon; that seem to slow the progression of the disease for some people. For a while. Still, we are getting closer to finding answers all the time.

I have also been facilitating a caregivers' support group for nearly 14 years now. The group I run is for adult children, for people with parents who have Alzheimer's Disease or some related disorder. This has taught me very different things about the disease. I have learned first that this disease changes caregivers. It softens the edges, rounds off the sharp angles, and teaches amazing lessons in compassion. I have also learned that this is not something to go through alone. We need to gather the people who love us around us, and reach out to the Alzheimer's community. And then we need to hold on tightly to one another.

Last month I was asked to lead a support group normally facilitated by a friend of mine who is in Spain this summer. His group is for caregiver spouses. There was a man in the group, I'll call him Charlie. Charlie's wife was in the later stages of Alzheimer's disease, and Charlie misses her very much. He was filled with so much sorrow and grief. He spoke about how they had first met, what she was like as a young woman, and how hard it is now to talk to her, and he longed to find a way to help her.

He looked as if he was about to cry. Had this been my usual group of adult children, baby boomers and younger folks, I would have provoked those tears. It doesn't take much at a time like that. I could just say something like, "That stinks," or "It's not fair, is it?" and the speaker would go right over that fine edge. The tears would flow and soon everybody would be crying...and then someone would crack some totally pathetic joke, and we would all start laughing until we could barely breathe. By the end of the evening, people would be fortified by having spent such a time with others who so deeply understand what they are going through, and they would be feeling very close to one another. They would know they are not alone.

But Charlie seemed to be putting all his energy into holding back those tears, and others were noticeably uncomfortable. I didn't want Charlie to be embarrassed. So I let the moment go. I told him he was a brave man, and moved on to someone else.

A woman I will call Evelyn spoke up. It was her first time with the group; her stepdaughter had brought her. Evelyn was full of anger and resentment. She spoke about how difficult her husband was, how she had to repeat things to him over and over again, and he still didn't do what she told him to do. Instead, he would follow her everywhere and ask the same questions over and over again until she wanted to scream. Worst of all was the cough. She would imitate his cough, a cough not coming from the lungs, or even the throat, but a shallow cough from the back of the mouth. And then she would say, "See, it's like that." She would cough again and say "See? I tell him to stop but he won't. I can't stand to hear him always coughing." She imitated the cough again. "See?" The group told her it wasn't his fault, but Evelyn was not convinced. She sat twisting up a handkerchief, looking very angry.

Toward the end of the evening, Charlie spoke again. He said that the hardest part for him was that every day brought with it new disappointment, every visit to the nursing home brought new heartache. It was, he said, more painful than he could bear, to be so continuously disappointed. I asked him why that was; I asked, "what are you expecting when you go to see your wife?" Charlie sat quietly thinking about that, and then, in a small voice, as if talking to himself, he said, "I keep expecting her to get better."

Once again, tears were close to the surface. Once again the group looked uncomfortable. Everyone was looking down at their laps. I wanted to be very careful about this next step--I wanted to be helpful to Charlie, and still not let things go beyond people's comfort level. So when he said he was expecting her to get better, I nodded a little bit and asked him, why? His brow furrowed and he sat up straighter, and very clearly he said, "Because you have to have hope, don't you? You have to hope for something!"

And now everyone was sitting up straight again. So I said, "Yes. What should we hope for?" After a few heartbeats of silence, Charlie said he hoped his wife could feel his love for her. Then another group member said he hoped he would be able to let go when the time came. A woman said she hoped she would learn about what is really important in life. And then Evelyn spoke. She was straightening out the handkerchief she had been twisting, and she said, "I hope I will become a more patient and loving person."

Now, this is supposed to be a sermon, and I've never given a sermon before. I was a Worship Associate for a long time, and had presented Reflections. I found myself wondering how a Reflection differed from a sermon. A friend told me a sermon should be instructive; that it should draw on the wisdom of the ages in a way that will tell us how to better live our lives.

I do not know how you should live your lives, or what religion has to say about memory loss. Growing up in a society of affluence and abundance, I have been taught a great deal more about acquiring things than I have about losing things. But I was thinking about all this, about how this will be my very first sermon and I won't be very good at it, yet knowing that you will not think less of me for that. I am not my abilities. And that reminded me of a Buddhist meditation on identity. Often called the "Negative Meditation," it has several different versions, but they all go something like this:

I might inject, someplace in the middle of that, a few extra lines: "I am not my memories. I have forgotten most of the days of my life, yet all my experiences remain part of me. I am the one who loves."

Buddhism, of course, also teaches us the importance of living in the present moment. In her award winning film, Complaints of a Dutiful Daughter, Deborah Hoffman refers to her mother's Alzheimer's disease as being the ultimate teacher of how to live in the moment. When she could no longer rely on their common memory base to frame their relationship, Deborah had to learn to relate to her mother only in the present tense. Patti Davis writes of her similar experience with her father, Ronald Reagan. She says, "We get the same questions from people who haven't had close contact with Alzheimer's: Does your loved one recognize you? Do they know who you are? And I've learned that most of us come around to the same answer. It doesn't matter. You change when you're around this disease. More and more you come to the experience bare of the trappings of your life: your interpretations and definitions of who your parent was in the past, and who you were in the past."

In the end, it seems to me, this is all a profound example of the first principle of Unitarian Universalism: We affirm and promote the inherent worth and dignity of every human being. Alzheimer's Disease does nothing that changes that fundamental truth. George will never be irrelevant. Hmmm. You know, it turns out I do want to say something about how we should live our lives. Maybe the power of the pulpit if getting to me. Maybe it would be the wiser course to just close with some reminders and a request. Too many people with Alzheimer's report that it is a lonely disease. Friends and even family members withdraw or become uncertain about how to relate to them.

People with Alzheimer's disease, and their caregivers, need our love and encouragement more than ever, and there is no wrong way to convey our affection and support. My request is that you consider joining with me in participating in Memory Walk on October 12th. Memory Walk is the biggest fund raiser held for the Alzheimer's Association, and this year I will be walking for George. If you already have plans and cannot join me, I will happily accept your sponsorship in the form of your good wishes and a check in any amount.

Finally, let's not ever forget that Alzheimer's disease is not a journey to take alone; we need to hold hands, and keep one another very close. We will now sing Hymn # 101, Abide With Me

Cilla Raughley is a member of UUCPA

Click here to see the George Bunn's reflection on August 4, 2002