Sunday, November 30, 2008
Friday, November 28, 2008
and I got in a lovely 34 mile bike ride this morning
before the rain came in.
Wednesday, November 26, 2008
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.
Tuesday, November 25, 2008
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.
Monday, November 24, 2008
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.
Sunday, November 23, 2008
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.
Saturday, November 22, 2008
Friday, November 21, 2008
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.
Thursday, November 20, 2008
Wednesday, November 19, 2008
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.
Tuesday, November 18, 2008
Monday, November 17, 2008
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.
Sunday, November 16, 2008
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).
Thursday, November 13, 2008
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.
Wednesday, November 12, 2008
Tuesday, November 11, 2008
It is so hard to draw the line of the help that is wanted but not needed.
- 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).
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.
Sunday, November 09, 2008
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."
Saturday, November 08, 2008
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.
Thursday, November 06, 2008
Wednesday, November 05, 2008
- 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.
Tuesday, November 04, 2008
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.
Sunday, November 02, 2008
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."
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.
Saturday, November 01, 2008
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.