back from our trip

What should have been a 5 hour drive took more than 7 between rain and Thanksgiving weekend traffic. I miss sharing the driving. But the kids focused well on helping me load the car, and we are pretty efficient. Both kids go back to boarding school tomorrow so I will focus on them tonight.

St. Christopher's

Last year we stayed home because my daugher had her wisdom teeth out, but this year we are back at St. Christopher's on Seabrook Island near Charleston for Thanksgiving. Lots of walking on the beach

and I got in a lovely 34 mile bike ride this morning

before the rain came in.

Thanksgiving

We are at a retreat center on the water south of Charleston--John and I and both our kids and our daughter's boyfriend. This is a tradition of 4 or 5 years standing, though we didn't go last year because our daughter had to have her wisdom teeth out. I asked for a cabin nearer the dining hall because John has Parkinson's, but I said it wasn't important. we could manage any of the cabins. To my surprise we got the closest cabin, which is set up to be handicapped accessible. It is nice to have the bigger bathroom and no steps. John seems to be enjoying the time here--it is good restful time.

where we are

I realize this blog may be confusing for many readers because John was diagnosed with Lewy Body Dementia much earlier than usual. He doesn't have hallucinations yet. His neuropsych testing in June showed impairment in only a few areas. He has definite Parkinson's symptoms, most notably slowness (only a little tremor) but his Lewy Body symptoms are subtle. His executive function (which was never his strong point) has gotten worse. He gets confused sometimes. Remember that he was a community college professor--even if his verbal abilities have started to decline, they started from a high level so are still fairly high. His driving was tested by an occupational therapist in August and he passed without reservations.

If anything, I would say that John is somewhat improved from June, due to Aricept (and more recently he is also taking coconut oil). For a while he was losing insight into his condition, but he has gotten it back. He doesn't want to just be taken care of, he wants to still have a partnership relationship with me.

For a while I resented so much having to do tasks we had formerly shared, such as financial and travel planning and home repairs, that I felt it wasn't a partnership any more. I also resented that he wasn't trying harder to do what he could to improve his quality of life, such as more exercise. I'm working my way through to a better place on that, where I can accept a rebalancing of the relationship. He's volunteering to do some things that are hard for me to get done because I am still working, such as picking up our son at school (though this vacation he said he would do it but then was behind in clearing up his stuff to make room for company coming for dinner and so I had to go pick up P).

John complains that I don't treat him as a partner any more. How can we see ourselves still in a partnership? He has started to do more of some things he can still do, but as soon as it gets beyond his routine he does have trouble getting things done. Can he still give me emotional support? I'm not sure, but he wants to try. It gets tricky when what I am upset about is our future together. But he has always tended to leave me to do the emotional work of the relationship so I do feel he would like me to work out things emotionally for both of us. Sometimes I resent that, but it does mean that he respects my emotional struggles (and he is used to my not accepting things without a struggle).

We are off today to the coast south of Charleston to a retreat center for the Thanksgiving long weekend--John and I, our two kids, and our daughter's boyfriend. This retreat center has lodge rooms, but they also have very low cost accomodations for their Thanksgiving retreat in the cabins used for their summer camp and nature education program for kids. So we will have our own cabin--one big room with five bunk beds and two bathrooms. We will walk on the beach and eat in a communal dining room and I hope to get in some long bike rides. I'm going to take my laptop and I think there is internet access somewhere but I may not post.

validation

What I've been gradually working through the last few weeks is that I need to learn a new way of validating myself. I am someone who has been able to validate myself by achievement, by what I can contribute to the public world (on a small scale). But caregiving is like housework--you wash the dishes and they just need washing again the next day, it doesn't accomplish something in the same way as writing a book. I'm sure there will be parts of my life in which I will still accomplish things, but to grow into the caregiving role that I am beginning to play, I need to give up depending on validating myself by achievement.

Some caregivers validate themselves by feeling that self-sacrifice is an honorable path, but I am too much of a feminist to want to go there. Instead, I'm wondering if I can learn to validate myself not by accomplishing something predictable and concrete, but by the fruits of my actions. In the religious circles I run in, people talk about how we can only know if we are doing God's will by the fruits of our actions. If unexpected good things grow out of what we do, then we are following God's path. It involves giving up trying to be in control, but looking for the good that can come out of difficult situations.

empathy

Meeting together with the therapist today, John complained that I don't tell him things. I talked about wanting him to show more empathy. When I do tell him something he asks questions and I feel pressured to have answers to his questions. I don't feel he is trying at all to imagine what it feels like, to put himself in my shoes. Ten years ago he was better at that, though it was an easier situation for him--I was dealing with issues from my childhood that didn't bring up any particular pain in him.

I talked about how painful it is to have the program I built at work at risk at the same time that I'm increasingly focused on caregiving, which doesn't involve achieving anything lasting. I said the only accomplishments that come out of caregiving are spiritual ones and there I feel so alone because he isn't interested in finding meaning in the journey we are on. I mentioned a book and he said he wanted to read it, but I'm not optimistic because he has read nothing I have given him except Grayboy's book.

I don't know if any of this is actually still possible for him or if I am doing nothing but setting myself up for disappointment.

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.

hard times

So much pain these days even in my little world. Among people I am closely connected to, one person's business is failing and he may have to declare bankrupcy, another's husband was just laid off, another's husband is working for a month and a half without pay. Still no word on what is going to happen to the program I run. So far we have been hit with a five day mandatory furlough (leave without pay) for all university employees. There was a story in the Boston Globe last weekend (when I was there) about what a depression would look like in today's world. My daughter read it, wanting to know how she might be affected. I do hear that applications are up almost 5% at my university--students deciding to stay in state.

discouraged

Nothing big, just tired. Things are still up in the air for the program I run. Dealt with a plagiarism case. Realized I haven't bought my daughter's air ticket for the end of Christmas vacation. Called yesterday to make her a dentist appointment over Christmas and it was already too late.

We have people coming over for dinner tomorrow and John isn't cleaning up his stuff until I tell him to work on each particular thing. He did say to me he thought he had cleared his stuff out of the guest room, could I check. That was a helpful way of handling it--there were several bags and boxes of stuff he had missed. He laughed rather than getting annoyed when I said that in a fit of frustration I had counted his blazers and he has more than 40. He agreed that he needs to give away more than half of them.

I did finally deal with the slow leak in my side of our Comfortaire mattress and called the company. The good news is it is 7 years old but still has a partial warranty--it will cost about $35 including shipping for a new pump unit. I'm glad it is the pump rather than having to dissect the mattress.

Lewy Body Dementia Organization

A new issue of the Lewy Body Dementia Association newsletter is now available, with an article about the benefits of the right medication, in this case Aricept or Exelon. I have the impression that the organization is beginning to have a real impact on awareness of the disease. If you run into doctors who are not aware, the information to give them is on the web site, including a new article for emergency room doctors. Please, if you can, make a contribution to the association for its important work.

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.

grey

My daughter says my hair is darker at the ends, whiter at the top. I don't think you can really tell it in this picture, but it is some kind of a map of the last five or six years of my life. The changing waviness is because I wear it braided almost all the time.

Today in therapy I was feeling guilty for what a grudging caregiver I am with John, particularly compared to my willingness to take care of my daughter when she was sick. An ongoing situation is so much harder than a temporary situation, and I am still struggling to get past how important it has been to me to have an equal relationship with John.

John is home

After 10 days apart what I notice again is how slow John is. He wanted to go to a meeting at 6 and it is my week to cook, so I had dinner ready at 5:30. It took him until about 6:10 to eat.

While in Texas, John spent a lot of time with his closest friend, who has been in denial about John being sick. John said that his friend became very protective of him, doing things for him.

John has now been on 10 mg of Aricept for about two weeks, no problem with side effects. Perhaps it is helping--he went to the town planning board meeting (to oppose a big box store in a residential neighborhood). That seems different from earlier in the fall, when he said he wanted to be a poll watcher but then didn't do anything about signing up for training.

I told John about coconut oil, and he is interested in trying it.

back from an unexpected trip

Our daughter E. was sick and I had a pretty-much free weekend and found low-priced last-minute airline tickets. So I decided Friday morning to fly to Massachusetts that day and she and I spent the weekend at my mother's house (my mother was away). E. had a terrible sore throat but the mono and strep tests thankfully were negative. I cooked her healthy food, like a soup made with sweet potato, carrots, parsnips, apples, and ginger (roast vegetables, puree with chicken stock, heat, add a spoonfull of greek yogurt to each bowl of soup). And we talked a lot.

I suspect that my decision to make the trip shows that I'm learning to be a caregiver. E. was very relieved to get to relax and have her mommy take care of her for a couple of days. By last night her fever was gone and she was feeling somewhat better--it had turned into just a bad cold.

John comes home from Texas tonight. When I called him Friday he sounded somewhat disoriented, but it was apparently because he had just woken up. I hope his travel goes as smoothly as mine did today (mine didn't go so smoothly on Friday--a 2 hours wait on the runway).

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.

helping

I really like 'elderly lady in training's comment on my last post. She writes that the pitfalls of helping include:

- being resented for giving help that's needed but not wanted

- getting run ragged trying to give help that is wanted but not needed

- wasting everyone's time by providing help which is neither wanted nor needed (although it never seems so at the time).

It is so hard to draw the line of the help that is wanted but not needed.

I also like the idea of being an elderly lady in training. I feel like I'm having to learn early lessons about letting go of control over my life that most people face at the end of life. And since my grandmother and her sister died of Alzheimer's the long slow way I do keep asking myself what would I want.

I'm thinking a lot about letting go of control and letting go of validating myself by what I achieve (the program I have spent the last five years building may get killed because of budget cuts). There isn't much sense of achievement available in caregiving, it is more like a losing battle against the forces of entropy.

Composing a Life

Someone recommended to me Composing a Life, by Mary Catherine Bateson. Bateson writes about her experience and four friends, focusing on how women since feminism have come to invent their lives as they go along. The recommendation came because I was talking about what I anticipate for my life as a result of John's illness and I said "It isn't who I expected to be."

Bateson's book does have a chapter on caregiving, but she focuses mostly on a very broad notion of caregiving that we do in the workplace and all sorts of settings, not just in the home. She emphasizes interdependence, complementarity, and collaboration (my first reaction is that doesn't do me much good with John).

There is something freeing about Bateson's notions of how life is more creative if it doesn't follow a linear path. And I'm thinking about her idea that parenting is an analogy for much of what we learn in maturity: "the willingness to relinquish control gradually and welcome the transition to an unknown future."

John's travels

John is in Texas for 10 days to see family and friends. I spoke to him Friday and he said his travel on Thursday had gone well. I asked him if he had a schedule for when he was going to be where, and he said that he hadn't made plans yet (except with the friend he is staying with initially). He said he got off without his book of phone numbers so he would have to go to a library and try to find numbers for people. I could help him with that; our Christmas list is on my laptop and so even though I am at a meeting in Pittsburgh I had most of the phone numbers he wanted.

I'm a little mindboggled that he hadn't made arrangements in advance with the people he wants to see. I don't know how much it is that I've always been the one who needs to have things organized in advance and how much it reflects his difficulty now with getting things done. "Has John always been this way?" is a question that confuses me so much now.

Cell phones help--I don't need an itinerary in order to reach him. Next I need to reset his cell phone voicemail password (which he has forgotten) so he can listen to messages.

travel

I'm in Pittsburgh for a professional meeting, John has gone to Texas to see family and friends. I've been working on travel plans for Christmas, partly with my extended family. I really don't much like to travel, but it always seems important.

letting go of control

With my therapist yesterday what came up was that I needed to find ways of further letting go of thinking I can control things. I said things like:

• Nothing I can do will change the course of John's illness.
• Nothing I can do will bring John to peace or spiritual growth.
• Nothing I can do will give me back control over my own life.

It felt right to say those things, to lower my expectations of myself.

Someone recommended to me Learning to Fail: The Blessings of an Imperfect Life, by Phillip Simmons, who had ALS. He writes in the foreword:

When we stop seeing the world as a "problem" to be solved, when instead we open our hearts to the mystery of our common suffering, we may find ourselves where we least expected to be: in a world transformed by love.

change

Yesterday and today a song has been running through my head:

Oh Mary don't you weep, don't you mourn
Oh Mary don't you weep, don't you mourn
Pharoah's army got drownded
Oh Mary don't you weep.

I'm thinking maybe it is a political comment.

Parkinson's specialist

The Movement Disorder Specialist we saw in Charleston has moved to Washington DC to work for the FDA, so John's local neurologist recommended a specialist in Atlanta, which is a lot closer. We saw him yesterday and were not happy with him.

It was an interesting experience for me because the doctor was taking the approach that John's Parkinsonism was mild and he didn't yet show all the signs of Lewy Body Dementia. John's response was to argue with the doctor that he is more impaired than the doctor realized (John had been working on his Social Security Disability appeal so he had been thinking in those terms). For me, having John acknowledge what I'm finding hard outweighed having the doctor ignore it. The doctor just didn't seem to be interested in subjective experience, only in the measurable symptoms. He made a big deal of how smart John was (having read the neuropsych testing report from May) as if he didn't expect to see Parkinson's patients who are smart. I finally said if John was 80 we would think he was doing great but this isn't what we expected at 63.

At the beginning of the appointment a nurse took John's vital signs and medication information and then sent him back to the waiting room. The doctor himself came out to the waiting room to get John and introduced himself to John. But the odd thing was that the doctor didn't acknowledge my existence when I got up and walked with John. Initially when he asked John questions I didn't speak up because I thought it important for him to see where John got confused. But he never did ask me for my perspective, though I did start giving it anyway.

friends

In this early stage of John's illness I'm afraid that friends won't believe me. John’s closest friend is in denial about John's illness, to the point where even John comments on that. It is partly because the friend has a wife with very slowly progressing Parkinson’s, without cognitive issues. John is going to Texas for 10 days the end of this week, mostly visiting that friend, but I don't know if that will change his friend's view as John holds it together pretty well when he travels.

Another friend of John's seems to get it, but I’m scared to ask him what he thinks. A few of my friends say “how awful!” but then I don’t know what to say. How to live with grace in a terrible situation without denying how bad it is? I don’t want to make it look easy but I also don't want to just say "woe is me."

diabetes charities

I don't support the American Diabetes Association because they give too much outdated advice (for better information see Blood Sugar 101). But these figures from David Mendosa are interesting:

Of funds that the Diabetes Research and Wellness Foundation raises, in fact 92.2 percent goes to program services and only 6.5 percent for fund raising. Its highest paid officer earned $93,221 in the most recent year for which data are available.

The ADA by comparison puts 76.2 percent of the funds that it raises into programs, spending 20.2 percent of its income on fund raising. The ADA rewarded its CEO with a salary of $383,843 in the most recent year for which data are available.

The JDRF comes close to the Diabetes Research and Wellness Foundation in the percentage that goes to program services, 86.1 percent and in the small amount for fund raising, 6.7 percent. However, its CEO is certainly well compensated, taking home $616,875 in the most recent year for which data are available.

The Diabetes Research Institute Foundation has good fund-raising numbers too. Of the funds that it raises 83.2 percent goes to program services and only 11.1 percent to fund raising. Its CEO did earn a handsome $446,373 in the most recent year for which data are available.

The Joslin Diabetes Center used 80.2 percent of the funds raised for program services and only 4.9 percent for fund raising. Great numbers. But it also paid its top people awfully well, one of them taking home $660,569 in the most recent year for which data are available.

Parents' weekend

Our son has spent four years at boarding school, and this year as a senior he has put all the pieces together and his teachers had wonderful things to say about him.


John wasn't ready at the time we had agreed we would leave on Friday--we got off half an hour late and missed our first teacher appointment (which we were able to reschedule). John did make an effort to do better Saturday--when we decided we needed to leave our hotel at 7:30 am he arranged for a wakeup call at 6. It really does take him that long, even without taking a shower. We did get off at 7:45 (which we had allowed for in saying 7:30) to get to the school for more teacher conferences.


I feel like John is not quite on target in that kind of social situation but not seriously so (and it never was a strong point of his). He doesn't go totally off topic but a good bit of what he says isn't really to the point.