advanced directives

I went to a program this evening on end of life issues put on by our community interfaith organization. The two panelists were a hosptial chaplain and a professor of nursing who specializes in policy. I asked what happens when a person prepares a clear advance directive about medical treatment at the end of life before they develop dementia, but then as the dementia develops they might change their mind. Both speakers answered that if doctors certified that the person was not able to make decisions for themselves then their earlier directive should be followed.

But I don't think it is so simple. When we are adults at the height of independence we think that we would never want to live dependent and not in control of ourselves. But perhaps the spiritual lesson we might learn towards the end of life is that we don't have to be in control of everything to have a worthwhile life, to have value. I do think it better to die of something else first than to die of Alzheimer's, as my grandmother did. But I also don't think a statement in advance that "I would never want to live like that" is necessarily worth more than what the person is actually experiencing even if their awareness of the world around them has become limited.

my mother

On the trip, I noticed that my mother has started to look to us to tell her what to do, as well as asking the same question every few minutes. Her mother died of Alzheimers so it is not a surprise. What I've been realizing the last few days is how upsetting it is to have her no longer be the strong one, even though I didn't have a good relationship with her. I haven't turned to her for support and help in dealing with my situation with John, both because she tended to be so critical and because she didn't have much relevant experience--both her husbands died suddenly (one in a car accident, the other of a massive stroke). But there is still some child reaction in me that finds it scary that she is no longer bigger than me. In more adult terms, maybe I felt that at least she was there as a last resort. Not any more.

evening out

John looked up options and we ended up going out for dinner last night to a jazz club. We had a pleasant dinner, and I found things to talk about that actually concerned us. (His conversation topic of choice is to tell stories he heard on NPR.) At least until we were driving home, when I suggested that his concerns about our son might be a reflection of his own teen-aged experience. He didn't like that, but then he's never been willing to consider that there might be any unconscious influences operating in him.

Today I was in tears at church, feeling very depressed. I think one thing that has thrown me is that my mother's not-yet-diagnosed Alzheimer's has reached the point where she leans on me and my sisters. This has advantages--she can no longer remember things long enough to be critical. But it is a lonely feeling. I told someone who said I am the matriarch now (I'm the oldest). That's a scary thought.

John didn't notice I was low and wanted to spent time together. I had a bike ride planned with a friend and knew that would help my depression most. I did tell him that I feel like I have to take care of him, it isn't a partnership any more, and that he isn't supportive of me. He first tried to deny that I have to take care of him and to blame me for not telling him my feelings. I did come up with some examples he would accept. When he accepted that there is a problem with our relationship he said he wanted to work on it. I have trouble making much commitment to that idea because I don't have much hope.

I'm standing up to him more, trying to call him on how he isn't putting in the effort to make the best of his life as it is now. That may be unfair--he may not be capable of it. But he wants to be treated as a full participant and I'm not ready yet to fake that.

perspective

Our son P. and I talked about many things driving home from his school--his Thanksgiving vacation started yesterday. At one point he asked the name of John's illness. He did have the idea it was like Parkinson's with Alzheimer's. I said that is a good first approximation, but having trouble thinking can take different forms. Alzheimers is most of all memory loss, so the person asks you the same question over and over again. Then there is one called Fronto-Temporal Dementia where the person acts inappropriately. Lewy Body Dementia starts with problems with excecutive function, difficulty with planning and organizing and managing anything complicated.

P. said while it is hard for me to try to do everything, that seemed better than having to answer the same question over and over again or deal with inappropriate behavior. And I said yes. I hadn't thought about it that way.

Obligations

In her New Old Age blog, Jane Gross writes that at one point she suggested her ailing mother come live with her and her mother replied: “If I lived with you, I’d be the one feeling guilty all the time. I’d rather it be you.”

I'm reading Hearts of Wisdom: American Women Caring for Kin, 1850-1940 by Emily K. Abel. What strikes me in the first couple of chapters, on the 19th century, is the obligation women felt to drop whatever they were doing to care for family members in case of illness. I was startled by the story of a successful New York physician who left her work to help care for her sister in 1876. One of her patients wrote to her: "Being that you have no husband, your dear mother has the first claim to you." (p. 45)

Abel writes about the sense of competence women got from caregiving, but I'm more struck by how caregiving gave sometimes very isolated 19th century women community because other women came to help and they reciprocated by going to help in other households. How to avoid isolation? My grandmother's wish was to be cared for at home through the whole long process of dying of Alzheimer's and she had the money to allow it, but it looked awfully lonely to me.

Different approaches

Someone I am in a group with has a husband who was diagnosed with early Alzheimer's, only they have now changed his diagnosis to mild cognitive impairment. She is happy about that. I asked her if she was troubled that the diagnosis doesn't match her experience of all the things her husband can't handle any more. She said no, she is happy because she had originally been told that they might have only two years before he would need more care, and the new diagnosis suggests it could be much longer.

I still feel that if John was 80 I would feel he was doing great, but this isn't what I expected at 63. The doctors seem to think that everything is fine if the John can take care of himself and carry on a conversation without being confused all the time. That is certainly better than the alternative, but not being able to work and share in family organizing make a big difference. John acts older than my father did at 80.

Coconut Oil

On an Alzheimer's site I saw a discussion of coconut oil possibly helping Alzheimer's. There is a newspaper article about it here: http://www.tampabay.com/news/aging/article879333.ece It is obviously not proven, but the science makes some sense to me, as I follow a low carb diet for diabetes. I don't know if John will be willing to try it, since it used to have a reputation as an unhealthy fat. I'm afraid I'm slipping into the dangerous pattern of wanting to try anything I hear about. Somehow my mind refuses to take in that there is nothing we can do.

Support groups

I didn't learn anything I didn't already know at the Alzheimer's support group tonight. There was a presentation on medication, but it was information I knew already. Actually, I did feel less discouraged when I left, but I had other things I could have used that time for that would have been more useful.

This coming weekend is the Well Spouse Association meeting--I hope that will be more helpful.

Travel

John and I flew together to Boston today for our daughter's parents' weekend. While he has apparently done fine traveling on his own, I find it hard not to get impatient traveling with him. I had to stop him from getting on the wrong rental car bus--arrangements he had made. A couple of other times he acknowledged he had gotten confused, as well as just the slowness.

We are staying with my mother, who is impressed by how cheerful he is. She says he seems more engaged. I said I think a lot of that is the benefits of Alzheimer's medication (I think she should try taking it fairly soon).

not being ourselves

“The main task for a person with Alzheimer’s is to maintain a sense of self or personhood,” Dr. Williams said. “If you know you’re losing your cognitive abilities and trying to maintain your personhood, and someone talks to you like a baby, it’s upsetting to you.”

Dr. Kristine Williams quoted in an article in the New York Times

I'm wondering what it means to maintain personhood. Does that have to mean maintaining the ego, continuing to be the same person? Or can I somehow still be a person, still enjoy looking at clouds, even if that "who I am" I built is slipping away? My grandmother died of Alzheimer's, the long slow way, and my mother is showing signs, so I see these isses as ones I will face myself as well as with John.

I don't know if Dr. David, is thinking in those terms, but his blog about his experiences as a physician diagnosed with LBD is moving.

impaired but not demented

I just ran into an old article in the New York Times about the needs of people in the early stages of Alzheimer's disease. It seemed to me applicable to Lewy Body too--what can someone do in the years after they are impaired but before they become incompetent? It stresses support groups and advocacy, which don't interest John. What I wish he would do is go through his stuff, figuring out what is worth keeping and writing down the stories behind family things. I'm working on hiring a student to help him with organizing one or two afternoons a week, but it is hard to get John to tackle the things he has too many of (from clothes to videotapes).

Lewy Body Dementia and Alzheimers

When I first started reading about Lewy Body Dementia, I was bothered that many web sites treated it as a variant of Alzheimer's disease. My grandmother died of Alzheimer's, the long hard way, spending several years bedridden and not recognizing anyone. She was a person who did harm to those around her even before the Alzheimer's hit, and the Alzheimer's made it worse for a while. So I didn't want to think that what I am facing had anything to do with that.

But I did read Learning to Speak Alzheimer's: A Groundbreaking Approach for Everyone Dealing with the Disease by Joanne Koenig Coste and it made sense to me. I'm now going to order The 36-Hour Day: A Family Guide to Caring for People with Alzheimer Disease, Other Dementias, and Memory Loss in Later Life by Nancy L. Mace. And I will at least try the local Alzheimer's Association support group. The issues are similar enough.

Last Friday I asked John, as he was heading off for his neuropsychological testing, whether he wanted me to reschedule one of his doctor's appointments for him. He is still making many of his own doctor's appointments (one of those things where it is hard to tell when to take over). He said that would be a big help. When I called the doctor's office they told me he had already rescheduled the appointment. I told him about that the next day and at first he still didn't remember doing it. When I told him the new date he said it was vaguely coming back to him. That kind of thing startles me--as he says, he has always had a bad memory but this is different. He used to lose track of things he needed to do, but if he as reminded he would have the details. Now he is just losing things. I tend to describe Lewy Body Dementia as something like a cross between Parkinson's and Alzheimer's only with less memory loss and more hallucinations. But John doesn't have hallucinations yet, and the memory loss is significant. I'm eager to see what we learn from the neuropsych testing.