LEWY BODY DAILY JOURNAL

This is the story of Pam and John; she in her early 50’s and John is 62. Pam is a college professor. John taught at a local community college until diagnosed with Parkinson’s in March 2008, then Lewy Body Dementia in April.

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Monday, December 22, 2008

traveling tomorrow

We celebrated Christmas yesterday--a busy day but it went smoothly. The new thing this year was that the only presents I got were ones that I had bought and given to John and to our daughter to give me. John always struggled with what to get me, but he used to try. It isn't a big deal to me but it is a symbol and a sadness. I've told our kids that next year they need to help with presents for me.


I got my daughter a copy of Don't Sweat the Small Stuff and I read part of it myself and think that I might actually be ready now to listen to those ideas. Our daughter has been happy to help me in the kitchen and that has made me more cheerful about making Christmas happen. We had friends over for dinner last night--goose with sauerkraut and sausage stuffing, mashed cauliflower, green beans, and pumpkin flan.

Tomorrow we leave for three days in Rome, John and I and the kids, and then a week in Venice in a small hotel with my two sisters and their husbands and kids and my mother. I'm at the point where I'm feeling overwhelmed by packing and trying to get ready.

I don't know how much I will be posting during the trip but I am bringing my computer.

Saturday, December 20, 2008

Christmas

I'm feeling better; I'm blessed to be resistant to depression. I had the energy to do Christmas shopping yesterday, and it went well. Today once I get some gifts wrapped and mailed my main focus will be on Christmas cooking, as we are celebrating Christmas today and tomorrow before we go away.

I asked John to work on Christmas a month ago, when I was swamped at work, and he has done some things. He has invited friends to come for dinner tomorrow and bought the goose. I know he bought some books for the kids. I did buy a present for him to give me, as he has for years had trouble figuring that one out. I was worried I didn't have much for him, but then I found two books he wanted on CD. I'm also giving him Dragon Naturally Speaking 10 software so he can start experimenting with speech to text. I think he will need a new computer to run it well but I keep wondering if he would be better off with a desktop on a rolling stand with a full sized keyboard instead of a new laptop.

Thursday, December 18, 2008

depressed

My laptop was in the shop for three days, but I've also been depressed. I'm not sure why it has hit me so strongly--it doesn't seem to be one big thing but just the accumulated burden.

John seems reasonably content with the way things are now, but I still feel guilty about the things he was complaining about a couple of weeks ago.

I walked through the house we want to move back to with the designer on a bleak day with the heat off and his estimate of what the work will cost is twice what I had thought. Not impossible, as the house we are currently in is the more valuable one (both bigger and in a prime location), but I thought I had all the money I needed lined up and I wouldn't have to worry about that and it isn't looking that way.

I continue to hear more discouraging news about the program I run at work. My job is secure, but what I've built is not.

We are going away Dec. 23rd on another big trip. I'm trying to keep track of what needs to be done. The first few days it will just be John and I and our kids, but much of the time we will be with my sisters, their husbands and kids, and my mother. I always feel torn between being myself and fitting in and I also wonder how they will react to where John is now.

Our daughter is discouraged after a tough semester at school.

I'm still not fully recovered from my sinus infection--now I'm having coughing fits. I haven't been able to do my regular exercise. And the antibiotic has thrown off my digestive system a bit.

People tell me to take things a day at a time and I just feel like a failure because I don't know how to do that. Somebody has to plan. I am too uptight about making mistakes, but I can't change that, except very very slowly.

Monday, December 15, 2008

family history project

I asked John how his appointment with the therapist went today. He said it wasn't at all how he expected. He was so upset last week, but he no longer had those feelings today when he got to the therapist. He said "That family history project you have gotten me into has changed my mood." He and the graduate student are clearly enjoying each other.

He asked me how I felt and I said I can manage with the way things are now, but when he was unhappy and wanted it to be different I didn't know how I could respond.

Our kids come home Thursday and Friday and we go away next Tuesday, so John and the graduate student won't have a chance to work further on the project until after we get back from our trip. But the graduate student went away with pages of notes to make into an outline of what to ask John's aunt about.

Sunday, December 14, 2008

bedmaking

We have one of those air adjustable beds, and my side had a slow leak for months. Finally it got bad enough that I faced the problem and disconnected and plugged the air hose on my side to see if the problem was the bladder or the pump. Turned out the problem was the pump and so I called the company and they sent me a new one (for a small fee--we had some warranty left). I've been waiting for someone to help me move the bed to install it for a week, but finally gave up and John did it with me. We actually did better than I feared with moving the cedar chest and the bed.

Then we changed the sheets and put on a new comforter cover, and that was where John had a hard time. Some of his problem was fine motor skills like buttoning the comforter cover, but where he commented on his difficulties was that he got confused with the process of putting on the cover. My method is to turn the cover inside out and lay it on the bed, attach the comforter at the corners, reach inside the cover and grab the far corner, and then turn the cover right side out with the comforter inside. It does sound confusing when I write it. It is a lot easier to do with two people than alone.

Saturday, December 13, 2008

Christmas letter

John wrote a draft of our Christmas letter. It starts off with several paragraphs about how well our kids are doing and our travels this past year, and then it suddenly changes tone. John wrote:

John’s big news is that he has retired early, and this has resulted from a serious health issue. Indeed it has been quite a tough year for him. The life changing health situation is Parkinson’s. One never anticipates such a development, and it was Pam who first perceived what the changes John was experiencing might mean. Pam began to suspect what the problem might be in January, and after John having first visited his regular physician, he was formally diagnosed by a neurologist in early March.
That is followed by more about his prostate problems last spring.

In my part of the letter I wrote:
Pam spent a lot of time going with John to doctors appointments and so realized quickly that his diagnosis meant a change in life path for both of us (particularly as the doctors think he has a form of Parkinsonism that has cognitive as well as motor effects). She thinks a lot about how to put feminism and caregiving together and how to find meaning in our new challenges.
And then a sentence each about my work, doing triathlons, and serving as a spiritual director. Often we don't get our Christmas cards out before Christmas but I'm actually done my other big tasks and wondering what to try to get done about Christmas.

Friday, December 12, 2008

financial forms

I'm filling out the preliminary college financial aid forms for our son, who will go to college next year. His grandfather gave him a very nice college fund so he isn't going to get any need-based aid but paying for his college isn't a stress on us. But I still have to fill out the form for him to be eligible for merit-based aid. The trouble is that 2008 is a transition year for us--John worked all of 2007, half of 2008, and will work none of 2009. For the next few years his retirement plus social security plus private disability insurance (which only pays until he is 65) won't be that different from what his salary would have been.

But where I am seriously stumped is that I don't know what of John's income is taxable and what is tax free:

  • Is social security retirement (or social security disability if he gets it) taxed?
  • Is his retirement income from his job as a state employee taxed?
  • Is his private disability insurance taxed?
  • The one I am pretty sure of is that his annuity income is taxed, as we bought that with untaxed money such as IRAs

I was thinking maybe I could get someone to help me with the form but after going through it once myself the problem is that I am going to have to go to several different people to get answers to different questions. I am grateful at least for a good online form that saves the information I entered and then prints out a list of questions I still need to answer.

Thursday, December 11, 2008

sick and tired of being sick and tired

I went to my doctor today and she said I had a bacterial sinus infection and gave me antibiotics. So hopefully I will start feeling better soon.

I arranged for an older graduate student named Mike to come over yesterday to meet with John. He is going to help John start recording family history--both the stories John knows and they will also interview John's 96 year old aunt who lives in a retirement community nearby. I may take over the interviewing when John gets to telling his own story, but there is a lot of family history he wants to get down first. Mike will figure out the technology--a digital voice recorder with two clip on microphones, probably Audacity to edit the files, and Dragon Naturally Speaking for some transcribing. John seems enthusiastic--he said months ago that he was going to interview Aunt Florence and had not made any progress towards starting so I think he is glad to have help getting focused. He has a lot of background in oral history interviewing so he can also see himself as teaching Mike.

Tuesday, December 9, 2008

oral history

I am trained as a spiritual director and a couple of people come to me regularly to talk about their journeys. One of those people, knowing that I also have experience with doing oral history, asked me if I would interview him and have him tell his life story so he could tape record it. He plans to edit the result for his grandkids. It is a long process--the last time we met we spent two hours covering less than 10 years of his life.

I'm thinking I should do the same with John. Our daughter talked about taping family stories last summer and he liked the idea, but she didn't have time and energy. It would be something of value to our kids to have and would give John and me something to do together.

It is hard for me to make that commitment to John. The voice is still so strong in my head saying "what about me?" What about all the other things I have to do? What about the kind of spiritual journey I wish I could share with him and he isn't interested in? (He says he wants to hear about my journey so long as I don't expect him to feel anything similar; I said it doesn't work that way when it is his disease.)

Monday, December 8, 2008

discouraged

John spoke today (when we met with the therapist) about feeling I have put up my barriers and disconnected from him. He said he feels like I love him but I don't like him. I didn't know what to say--he was upset and it seemed cruel to say there is some truth in that. Last week I gave him a book I liked very much that I thought might help open up more sharing. John said today that he found the book completely foreign to who he is.

After I came home I happened to read a story (Christian) on the internet about the importance of being true to our feelings (this link goes to part three, but has links at the beginning to parts 1 and 2). I feel like my only choices are to betray myself to keep him content or to betray him.

It has been one of my philosophies of life that there are always more than two alternatives. But I'm still not feeling well and I'm too low to think of any right now.

Sunday, December 7, 2008

Advent

I spoke at the UCC church today. I said something like:

"Advent is about waiting. Sometimes all we can do is to wait in the darkness, feeling abandoned, isolated, that our lives have no meaning. We hide that pain and fear under our busy-ness and consumerism, but it may be better to accept it, to sit with it and try to remember that God is with us there in the darkness.

When my husband John was diagnosed with Parkinson's last spring, my first impulse was to do something. I did research on the internet, I suggested to the doctors medications to try. Sometimes that approach works--it had worked for me five years ago when I was diagnosed with diabetes and changed my way of eating and started exercising and ended up healthier than I had been in years. But sometimes we have to realize we can't fix it. Nothing I can do or he can do will change the course of John's illness. It has been a hard for me to take that in, to accept that."

I invited the other people present to speak if they wished of where they were waiting in the darkness, either in their personal lives or in the world.

The pastor spoke of our words as a lament, which she defined as speaking our pain to God with an expectation that God is listening.

Saturday, December 6, 2008

bad cold

I had hoped to head it off, but it didn't work, I've got a bad cold. I am trying to practice being gentle with myself--last night I went to sleep before 8 pm and slept until after 7 am and today I went to my office but didn't get much done. I've been cooking dinner despite how badly I felt--John would have if I had asked but I didn't ask because he would have been so slow and dinner would have been late. But he has been concerned. I hope he doesn't catch it, as even dextromethorphan is on the list of drugs to be avoided, much less codiene cough medicine.

Thursday, December 4, 2008

travel

John went to New York Monday for a special wine tasting, came back yesterday afternoon. I had asked him to schedule his flight so he could drive our daughter to the airport Monday morning, but he forgot when he bought the tickets. I probably wouldn't have felt comfortable with him doing it anyway, since she had a friend with her. But I had to take our son back to school Monday also, so it meant 5 hours of driving for me, after over 7 hours on Sunday. Tuesday morning I had a very sore shoulder from all that driving but it is better today.

John did have a good time in New York and reports that his travel went smoothly. He doesn't seem too exhausted--he got to a massage appointment today. And he has even been acknowledging the strain on me of all the driving.

Wednesday, December 3, 2008

One slide

This image comes from the One Slide Project to encourage people to talk about their wishes for end of life. The idea is for people to spread the word and add this slide to Powerpoint presentations they are giving.

We can say yes to 4 and 5, but I don't feel I have enough information on 3. I've worked some on writing out my wishes for myself.

Tuesday, December 2, 2008

appreciating what I have

I have trouble enjoying what I do still have with John, which is a lot, because I am grieving so what is lost. Instead of appreciating what he can still do, I resent what I now have to do. I've been trying to work through this by accepting my feelings. What has worked for me in the past with difficult feelings is to go through my anger and resentment, let myself feel those feelings, and eventually I will be able to get past them (while if I try to suppress them they will never go away). But it doesn't seem to be working.

I think the reason it is not working is that I have not been able to fully get past my resentment over the things I didn't get from my mother (like a safe childhood). I'm not willing to appreciate the things she did/does give me because she didn't give me things I critically needed as a child. So I easily get stuck in child feelings of "it isn't enough." But I don't know how to heal that further with my mother either.

So I am beating myself up about being stuck in anger and resentment. John used to express concern that I was feeling bad about feeling bad. Maybe I just need to give it more time. But I'm wondering what other ways out there might be.

Sunday, November 30, 2008

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.

Friday, November 28, 2008

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.

Wednesday, November 26, 2008

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.

Tuesday, November 25, 2008

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.

Monday, November 24, 2008

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.

Sunday, November 23, 2008

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.

Friday, November 21, 2008

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.

Thursday, November 20, 2008

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.

Wednesday, November 19, 2008

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.

Tuesday, November 18, 2008

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.

Monday, November 17, 2008

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.

Sunday, November 16, 2008

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).

Thursday, November 13, 2008

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.

Wednesday, November 12, 2008

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.

Tuesday, November 11, 2008

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.

Sunday, November 9, 2008

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."

Saturday, November 8, 2008

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.

Thursday, November 6, 2008

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.

Wednesday, November 5, 2008

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.

Tuesday, November 4, 2008

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.

Sunday, November 2, 2008

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."

Saturday, November 1, 2008

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.

Thursday, October 30, 2008

awareness

An English blogging doctor has a fascinating post in which he says that some patients who are unhappy at the stage where they see their dementia progressing become happier when the medication that was helping them is stopped and they progress further into a level of dementia where they are no longer aware of their losses. A painful thought.

John is not a very reflective person and is determined to make the best of his situation, so he doesn't seem too depressed by his losses. I wonder if he will be at a later point.

Wednesday, October 29, 2008

thinking about other things

Despite my frustration about how much John can take responsibility for himself, I do have days when I don't have to spend time or energy on his stuff. Of course, part of the reason is that I am distracted by a difficult situation at work. The program I built and run may be crippled by new university rules as the result of a budget crunch. We have the money (even after the cut) but the rules may prevent us from paying the faculty who can provide the courses students need. Plus I gave a test in my class and spent two hours doing an oral history interview.

But I also ran 3 miles and cooked a nice Thai green curry for dinner and I've spent this evening catching up on email, much of it not work related.

Tuesday, October 28, 2008

discouraged

John got some things done today, but only because I went over with him what needed to be done and because he felt pressured by me. I've been feeling discouraged that my idea that he can take responsibility for some things himself (with a little reminding by me) just isn't going to work.

I finally came to more understanding of the situation while talking to my spiritual director this afternoon. This is a stage where John can still do things but needs lots of coaxing and help from me. It is a particularly hard stage for me, because it would be easier just to do many of these things myself. Also, for me helping someone else takes a lot of emotional energy. For example, I have to say aware of whether he does a task I have reminded him of and decide when would be a good time to remind him again or how to try to get him started. This isn't a stage that fits my strengths but it is where we are at--we are not yet to the stage where it is appropriate for me to just take over (which will actually fit my strengths better).

Monday, October 27, 2008

partnership

John and I met with the therapist and John said he feels I don't communicate with him. I said it hurts to ask him for input and not get it, so I tend to give up asking. We added a category to the list I started--things that are his responsibility (all but one are things that are about him only), things that are my responsibility (what I've put on the list is family responsibilities), and the new category is things that we do in partnership or share responsibility for. Cooking is on that list, not that we do it together but we take turns (week by week).

I asked John if he would share responsibility for Christmas and he said something that sounded to me like "if you tell me what to do." I said I would be glad to discuss issues, but I didn't count it as sharing responsibility if he waits for me to bring the subject up, decide what needed to be done, and tell him what to do. He said he would try.

I'm not sure any of this is going to work. But I think it is worth a try. In Families, Illness, and Disabillity, John S. Rolland writes that

Both partners need to realize that sustaining intimacy depends largely on establishing viable caregiving boundardies. Even the strongest relationships are strained by the ambiguities and discrepancies in shifts between two forms of relating: patient-caregiver and equal partners.
And that: "one of the key tasks of the chronic phase" is "maximizing autonomy for all family members given the constrains of the disorder." (pp. 245, 247)

Sunday, October 26, 2008

letting go of control

Today instead of a sermon, a member of my church gave a message on stewardship. Only he is a real estate developer who in the current economic situation may be facing bankrupcy, so it wasn't about giving money to the church. Instead, it was about his trying to learn from his experiences this year to stop trying to be God, stop trying to be in control of what happens. He said he hasn't had a transforming moment, a moment of surrender and then everything is different. Instead, it is more like Jacob wrestling with the angel all night. But he knows that being in community helps. And while he didn't talk about this I know he has re-invented himself several times before.

Today I got done two tasks that I had put off for months--revising a professional article and buying air tickets for a Christmas trip. In both cases I was afraid that there would be problems because I had put the task off so long, but they went smoothly. So I got away with being gentle with myself, not forcing myself to deal with those things earlier. I felt "I do what I can do."

I really don't know how much is reasonable to expect myself to be able to do. John can still take care of himself, though I have had to take over a lot of family organizing. My time isn't terribly full (particularly if I count the work time I could use for writing projects). But knowing the situation we are in is such a drain on my emotional energy. I think I have let go somewhat of trying to plan too much for the future, but I tend still to be braced for something bad to happen. How can I let go more of wanting to be able to predict my days and be more flexible to take advantage of what opportunities I have?

Saturday, October 25, 2008

confused day

Yesterday John was having a bad day. He was still asleep when I left early for work, so all I know is that he missed an 11 am appointment. His 96 year old aunt already had a document giving him power of attorney in both legal and medical matters but I wanted that modified to list me as a successor if he can't do it. They had an appointment with the lawyer to sign the new document.

I got home at 2:30 to go up to our son's school for a 4:30 appointment. John wasn't quite ready but the main reason we were late was unexpected traffic, due to accidents in the heavy rain. Driving up John asked confused questions about several topics. Finally I asked him if he knew of a reason why he was having a bad day. He said he didn't know the reason but he certainly was. We did enjoy the play our son was in: "The Complete Works of William Shakespeare, Abridged."

While we were driving, John and I did have a conversation about death, which feels valuable to me as a way of being on this journey together. I had sent him a link about Voluntary Stopping of Eating and Drinking but he hadn't read it. I am interested in the philosophical question--if one believes in leaving death in God's hands then what interventions can one refuse? A feeding tube? Antibiotics? IV fluids? Food and fluids? It seems to me very hard to draw a line. John commented in several cases that he thought that would be a painful way to die. I said research suggests it is not painful for the frail elderly, but I don't think he was convinced. I have the text of a couple of articles on that--email me (pam55sc at gmail) if you want them.

Thursday, October 23, 2008

feelings

I've been low this week. I think the conference made the future of caregiving realer to me, plus I feel that expecting John to do some things himself without me urging him isn't going very well. Yesterday a friend told me how when she was 17 and caregiver for her mother with multiple sclerosis, she said "I can't do it any more" and her mother took an overdose of sleeping pills. I was able to talk about that with my peer group of spiritual directors today and I said: "When the synchronicity is that strong what can you do besides remember to breathe?" If I can synthesize the answer I heard, it was that we can trust God to guard some thread of meaning in our lives.

Tuesday, October 21, 2008

kids growing up

Both our kids go to schools that have a tradition that through the year each senior gives a chapel talk. Our son gave his today and we went up to North Carolina to hear him. His talk was about what he has learned from travel with us.

John commented when we got to the school how fast these three plus years have gone. What strikes me is how our son has grown up. He has learning differences that he inherited from John but he seems to be finding his way.

Monday, October 20, 2008

unstable middle ground

I need to find a middle ground between taking everything over and focusing on my own life (letting John take responsibility for himself). The trouble is, the middle ground doesn't feel stable. As soon as a problem comes up I feel I have to drop everything and take over. Or it feels like the only way to let him take responsibility for something is to not care whether the job gets done or not.

I have an image that the middle ground is a ridge with a slippery slope on either side. So I need a way to chisel out steps, flat places where I can have a more stable middle ground. My first thought of how to do that is to make a list of what is my responsibilities and what is John's. We talked about it some over dinner and he agreed with the principle that whether he does exercise and activities that will help preserve his quality of life is his responsibility. So I started a list as a shared Google document.

Sunday, October 19, 2008

The New Normal

One of the concepts that struck me at the Well Spouse Association meeting is the idea of a new normal. I didn’t even go to the workshop with that title, but the phrase has stayed with me. I think I’m imagining some stability, and in the long run I’m not going to get that. But I still see some peace in thinking “this is now what’s normal for us.” This isn’t (or isn’t only) a strange and scary place, it is where we live. That’s very similar to the famous meditation for people with children with disabilities called Welcome to Holland. How to be here, in this unexpected place? There were people at the conference who had been well spouses for 20 or 30 years (mostly with spouses with Multiple Sclerosis). Caregiving is a place people live, not just one they visit in a crisis.

How to settle down to living here? I wonder if it is possible to sit down and discuss with John what he can do and what I will do. I will take care of finances and family plans and remind him of those things. I will go to doctor’s appointments with him. When he asks me to, I will take over his bills and organizing his medications. He is responsible for his things and for the day to day matters of his health, such as exercise, and for finding the things to do that make his life worthwhile.

Saturday, October 18, 2008

Well Spouse Association

First some resources:

A really good article on dementia and violence.

A story about grief on video.

I'm in Chicago for my first convention of the Well Spouse Association. I got in a little late for dinner last night, but people were very friendly. The first workshop I went to this morning was on Tear Soup. They had trouble getting the video set up so we first went around the large group and told our stories and what we were grieving. So much in common. Then we did get to see the Tear Soup video, which is very good. Then I went to a workshop on self-identity in caregivers, where we had to keep being brought back to talk about ourselves. After lunch I went to one on How do we cope? for those with kids. We were a small group but we had kids around the same age and it was really helpful. People headed off for tours of various attractions in the afternoon but I decided that what I needed to do to take care of myself was to have a quiet afternoon. Feeling a little teary about being with people who get it.

Friday, October 17, 2008

Chicago

I'm at the Well Spouses Association meeting in the suburbs of Chicago. I got in barely in time for dinner, so don't have much sense of the group yet, but the people I sat down with instantly welcomed me and asked me about myself and my spouse. They liked my description that I am coping well but it is damn hard. The program tonight was honoring the founders of the organization at its 20th anniversary, but even that made me feel a bit teary to hear people talking about lives like what I now imagine.

Thursday, October 16, 2008

discouraged

I told my massage therapist that I had been thinking it was time to settle down and see John's situation as likely to be fairly stable for a while, get myself out of crisis mode. And then having to miss my class yesterday to take John to the doctor felt like crisis mode again. The massage therapist said I will need to be able to rapidly switch back and forth between chronic mode and crisis mode. I said I have a hard time with that kind of transition. He said I will get good at it. Sigh. I don't want to get good at it!

Wednesday, October 15, 2008

good news from the ophthalmologist

The bleeding in John's eye was just a bit of bad luck with the natural changes of age (the gel inside the eye shrinks). The doctor examined his eyes several ways, including with a lens pressed to his eyeball, and saw no problems with the retina. So that was good news--I was expecting John would need laser treatment. I did have to miss my class; the only time the doctor could fit us in was in the middle of the day and we waited for almost two hours.

John was very drained when it was over but he seems to be feeling better now.

Tuesday, October 14, 2008

new issues

John called from the airport where he changed planes on the way home to say that he has what is almost surely bleeding inside his eye. He talked to one ophthalmologist and I spoke to mine and both said come in in the morning. So far as I can tell the problem is related to nothing but age and bad luck.

Reading the book on Families, Illness, and Disability over the weekend I had focused on the idea tha we are out of the crisis/adjustment stage now and I need to change my approach to focus on the long haul. I started to think about what do I want to get done while I still can, and this morning I was seriously thinking about signing up for an Iron Distance triathlon next fall (signups don't open until early December so I don't have to decide yet). And now here we are back to crisis mode--not a big crisis but I've cancelled several appointments tomorrow so that I can take John to the doctor.

Monday, October 13, 2008

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.

Sunday, October 12, 2008

Families and illness

I'm reading Families, Illness, and Disability by John S. Rolland. It is written for professionals, not for families, but I am finding lots of useful ideas. The first part emphasizes previous experience and family patterns, which I was already realizing. John's thinking is very much shaped by the death of his parents, mine by my own experiences of the death of my fathers and my grandmother, as well as having a sister with a cognitive disability.

The interesting immediate example of family patterns is that this weekend my mother was more positive about John, now he is ill, than she has been in the past. She and John went and picked raspberries while Elizabeth and I worked on her laundry.

What I like best in the book is not the theory but the case studies and the questions that Rolland suggests asking families. For example, in the chapter on intergenerational patterns he suggets asking families about previous experience, about:

What would they want to do similary or differently? Are there aspects of the current situation that they feel confident, insecure, or terrified about?

I feel terrified that at some stage John will want my attention constantly. But the book is helping me see that now is the time to make a transition from the crisis (or at least acute adjustment) stage to an early chronic stage where I have a last change to pursue my own goals while I still have the opportunity and can encourage John to have as much autonomy as possible and take responsibility for his own choices.

Thursday, October 9, 2008

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).

Wednesday, October 8, 2008

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.

Tuesday, October 7, 2008

Still on the difficult topic

I realize that I feel so scared of John's intention to end his life before reaching the later stages of dementia because in some primitive place inside me it feels like I am a child who said "I wish you would die" and the person died. That may come from confused feelings from my own childhood; my father died in an automobile accident a month before my third birthday. Both my fathers died suddenly--my (step)father died of a massive stroke while traveling almost exactly three years ago. I wished I could have said goodbye.

Monday, October 6, 2008

further conversation about difficult issues

John and I had another conversation today with the therapist about John's intention to end his life before the dementia gets bad. Today we were also joined by our pastor, who was for several years director of a suicide hot line.

I wanted John to hear my feelings that there is no way he could end his life without it being physically and emotionally messy and terribly hurtful to me and our kids. The thing that did get through to him was that I would feel rejected by him.

He talked about the death of his parents when he was in high school and college. His father died unexpectedly of a heart attack, his mother died a lingering death after a car accident. Both were horrible experiences for him. I don't think he can believe that a peaceful death is possible. He also does not accept the idea that he could have quality of life when he is no longer himself. I spoke of how I have come to understand facing our own deaths as a period of learning to give up control and trust God, but that didn't mean anything to John.

The pastor believes that my views and John's are two positions on a continuum of possibilities and if we keep talking we can come to a shared position. I asked John if he was open to the possibility of changing his view and to my surprise he said yes. I said I was open to changing my view (I do believe in theory in his right to make his own decision). But it is hard to imagine a shared position because there is likely to be so large a gap (I'm guessing three years or more) between when he goes past the point of being able to end his own life and when death can come naturally by withholding treatment. He doesn't want to live in that condition.

Sunday, October 5, 2008

social isolation

John was happy to be asked to take a role in a special world communion Sunday service at the UCC church, serving communion. Afterwards there was a birthday party for the pastor and John got himself some food and sat without talking to anyone and wanted to leave quickly.

He has several friends he keeps up with, but he has no interested in being involved in groups and committees. The problem tonight may in part have been his difficulty with hearing when there is background noise, though it wasn't a large group. I asked him a month or so ago if he wanted to get trained as a poll watcher and he said he had been thinking he would like to do that, but he didn't follow up on it.

I supposed that responding to people in a group may have the kind of complexity that he doesn't want to admit is hard for him. But his lack of any interest in being in community concerns me. I'm an introvert, but I believe in the importance of having community.

Saturday, October 4, 2008

reducing chaos

We had a roof leak that ruined the ceiling in our son's bedroom. The insurance company is paying for repairs--the problem was a defect in the roof their contractor put on when a tree fell on our roof five years ago. Our son's room is getting a new ceiling. I decided at the same time we should have the ceilings painted in the hall, our bedroom, and our bathroom, where there is some mold growing.

We don't have to clear the rooms--I asked the contractor and he said anything that is in the way of the workers they will box and moved out of the way. But I'm trying to clear off the stuff piled on my dresser and bedside table. I'm about 1/3 done. The work starts Wednesday but they probably won't start on our bedroom until Thursday.

John agrees that we should have the other ceilings painted and he says he intends to clear his piles of stuff out of the way. But he has hardly started. I am very thankful that it isn't our responsibility to get stuff out of the way--I can just let his stuff be his responsibility.

Thursday, October 2, 2008

my health

When my family doctor saw me in July she was concerned--my A1c (a measure of diabetes control over several months) was up significantly and my LDL cholesterol was up as well. She was also concerned about my emotional struggles with caregiving and told me that menopause is a very vulnerable time for depression. She suggested either an anti-depressant or estrogen. I said give me two months and see if I can find a solution for myself.

Today she was very pleased with my numbers. My A1c is back to its usual excellent level (5.6), my LDL was lower (still somewhat higher than recommended but with an HDL of 78 I refuse to worry about it much). I also reported that while it is still hard I don't have days when I feel hopeless.

I actually give a lot of the credit to the supplement I am taking, which lowered my fasting blood glucose 20 points (from a high level due to stress back to my usual level) and seems to take the edge off the depression. My exercise is also back up some from what I had time for in the spring and I am being careful to stick to my low carb way of eating.

The doctor asked me if I was worried about my weight. I said I've tried to take the attitude that if an extra 20 pounds is what my body wants to get me through menopause with nothing more than mild hot flashes, that is fine with me. But I've gained some more from stress and I am disappointed that it hasn't come off when I brought my A1c back down. I don't believe in dieting (see this for why) but I wish I could go back to the weight my body settled at when I started controlling my blood sugar (which was at the top end of the normal range for BMI).

After I talked defensively for a while the doctor said: "I'm not worried about your weight, I only asked if you were worried. If I were you it is the last thing I would be concerned about; I wouldn't even weigh myself." It was such a good feeling to hear that from a doctor, particularly one who was also telling me that she was very pleased with how I was doing in other respects.

Wednesday, October 1, 2008

marriage and chronic illness

A post I read on the Wellspouses forum has me thinking. It was from several months ago but if you are in the group you can find it by searching for the subject "How do you define a healthy WS/IS marriage". I don't want to quote it because I haven't asked permission, but the general argument is that when a spouse is temporarily ill we relate to them by making a fuss over them, but that doesn't work for a long-term illness or disability. The author argues that in the situation of a long-term illness or disability the ill person should as much as possible take responsibility for figuring out how to manage their own care, just as they would if they were single. The key suggestion is to avoid taking responsibility for the other person, but instead let them take the consequences of their own decisions as much as they are still capable of making reasonable decisions. That makes me realize I've fallen big time into trying to rescue John (and then resenting that role). And he isn't to the point where that is necessary yet.

Tuesday, September 30, 2008

Disability insurance interview

John got disability retirement from his job, and he had private disability insurance, which has come through. He has also applied for Social Security disability, but we don't expect the first word on that until December.

Today a representative of the disability insurance company, Met Life, came to our house to interview John. For two hours! It was a friendly enough interview, but exhaustive about the history of John's illness and the work he used to do. The representative also took pictures of John. The representative seemed to get that the biggest issue is slowness, but I still worry that John doesn't look that disabled. John did have to struggle a little getting in and out of a chair. But he made a big point of how he his thinking is not impaired. He did get confused a few times but nothing that would strike the average person as really odd. I hope that the insurance company doesn't try to kick John out of disability coverage. He only gets two years coverage, until he is 65.

Monday, September 29, 2008

LBD support group

I went this evening to our local Lewy Body Dementia support group. The organizer and I were the only ones to show up. We talked about how we might find more people. The local Alzheimer's association does let people know about the LBD support group--that is how I found out about it. She thinks the problem is that doctors in the area are not diagnosing Lewy Body Dementia. I suggested then maybe we should organize it as a Parkinson's support group with caregivers meeting separately. The closest Parkinson's support group is 30 miles away and meets in the early afternoon.

Thursday, September 25, 2008

further conversation

I told John that he may believe that ending his life (he is clearly talking about some years in the future) would be the right choice for him, but he should not believe he is doing it for his family. I am confident I am well on my way to knowing how to care for him through Lewy Body Dementia, to a natural death, without it being emotionally or financially devastating. He said he wasn't convinced that was possible. I gave him a couple of examples and what seemed to make the most impression on him was my confidence that even if he got violent that could be controlled by medication and after a while he would come out of that stage. Sometimes I feel that reading the Lewy Body caring spouses Yahoo group means I know too much too soon. But here that knowledge was valuable.

I am off to a retreat for the weekend at a place that has been an important spiritual home for me. They have decided not to take guests any more after this weekend. I hope this weekend I will be able to grieve that loss.

Wednesday, September 24, 2008

difficult conversations

I'm going to repeat what I posted to the Lewy Body caring spouses group because I don't feel very safe writing about this and I got a supportive response there.

At a session we both had with the therapist today, John said that he doesn't want to end up bedridden or not recognizing anyone, he wants to end his life when he is reaching the point of no longer being competent (which we both expect is a number of years away). My own beliefs lead me to discourage that but in the end to respect his decision if that continues to be what he wants; I realize that other people have other beliefs. He doesn't expect me to assist him and I don't think I would be willing to go there. My question for this group is whether people commonly carry that intention out, or whether it is much more common to have that intention and not actually carry it out. I'm guessing that I can't plan on it actually being what happens.

Confused feelings have been churning in my mind, and I was brave and asked for help, called a friend/pastor and arranged to meet her at a coffee shop this evening to talk. She actually turned out not to be the best person to talk to because she knows too much and so I felt pushed. She ran a suicide hotline for three years and has experience of several other sorts. She believes that we can talk about it as a family and come to a decision that we all can accept. But right now where I am at is that my emotional reactions and my intellectual beliefs are so contradictory.

Sunday, September 21, 2008

different approaches

I spoke with someone at church today whose husband was diagnosed with Parkinson's two years ago. He is now doing so much better, and she wanted to tell me not to be discouraged, that if we kept trying we will find medication that will really help. She was hopeful for a cure and said the doctor told her husband he would die of something else.

We are only six months from John's diagnosis, and maybe in a year and a half I will be in a positive place the way she is. But I doubt it. We went to a Parkinson's Disease Foundation educational conference last spring in Charlotte and it was clear to me that there aren't any big improvements in treatment in the pipeline, at least in the next five years. Medication has helped, and John is doing well. But I see the signs of how it will get worse. I doubt that in a year and a half he will still be able to travel alone, though I could turn out to be wrong about that.

I do want to get better at enjoying what we have while we have it. But I don't think denial would work for me--I would get angry at what John can't do. And I want to prepare for the future.

Saturday, September 20, 2008

Alone

I've always liked alone time, so I was surprised when I realized I was feeling a bit at loose ends with John away for a week. But I'm so used to having my time not be my own, between kids and John. Now my kids are away at school and this week John is away (Tuesday to Tuesday).

It is nice to have my time be my own, but I've forgotten how to shape my days in that larger flow, knowing that I won't be interrupted. I could schedule myself but I don't want to be rigid about it; I just want to think about my time in larger chunks.

One think I would like to do is some house organizing, but I find even more of the piles than I realized are John's stuff. I so want to have him have his own part of the house for his chaos. The problem now is that when I clean an area up he takes it over and piles his stuff there.

Wednesday, September 17, 2008

John's trip

John says that he is very tired after spending the afternoon reading microfiche and isn't doing much else during his time in Washington. I'm impressed he is still able to spend hours reading microfiche--that is hard for anyone. They do have new machines at the Library of Congress that instead of paying for a photocopy will email a PDF of the selected page, so he doesn't have to take notes.

Part of the confusing thing about evaluating cognitive function is that it is relative to where you start. John started in a place where he could lose some function and still be above average in verbal skills.

sleep doctor

A belated report on our appointment with the sleep doctor on Monday.

A year an a half ago I had urged John to get a sleep study, because he would occasionally gasp and snort as if he was struggling to breathe. That study showed that he was having 3 apnea episodes an hour--not frequent enough to need treatment. The doctor said to come back in a year and see if it had gotten worse.

By the time John got back, our key concern was not the sleep apnea, but the REM sleep behavior disorder (RSBD). A year ago John was waking me up every night crying out in fear or anger in his sleep. He hadn't hurt me, but he had hit at me a few times and I didn't feel safe. He had been taking Imipramine to help him sleep and the Movement Disorder Specialist wanted him off that because it makes the RSBD worse. John wanted a substitute medication to help him sleep and the specialist said he should see a sleep doctor for that. The medication most often used for RSBD is Klonopin (Clonazepam), which would help him sleep but can make sleep apnea worse.

John didn't think he could do without a sleep medication (in addition to Clonidine) but he ended up weaning himself off the Imipramine about a month before the sleep study. The RSBD became less of a problem because I started moving to another bed as soon as he woke me, but also became less frequent once he was off the Imipramine. The sleep study showed less apnea than a year and a half before. The sleep doctor started focusing on telling John he slept ok even in the sleep study, he should just try to go to bed within 30 minutes of the same time every night.

I pointed out that our main concern had been the REM sleep behavior disorder. That hadn't showed up in the sleep study, which the doctor thought not surprising. I do think it has lessened considerably (though I still move to another room because of John's snoring). We agreed that if it wasn't bothering him or me it didn't need treating, but John asked for and got Klonopin for occasional use when he does need something to help him sleep.

Tuesday, September 16, 2008

financial

I went to the Human Resources department at work to clear up a last financial question. I wanted to change my beneficiary so that if I should die before I retire and John is still alive, my retirement benefits would go to our kids instead of to John (this has to do with getting things out of his name in case he has to go on Medicare). I was worried that because they are young they would get a trivial amount per month. Instead, I was told that if they get the benefit they split a monthly benefit for their lifetimes that is 3/4 of what John would get per month. So they would get a lot more over their lifetimes.

John is safely in Washington DC and I am enjoying the quiet.

Monday, September 15, 2008

Prescriptions

John is going to Washington DC tomorrow. He will be flying there and taking public transportation once he gets there, and he will be staying with my aunt, so I am not particularly worried about the trip.

This evening it was about 5:30 pm when we got home from the sleep doctor (plus a trip to the supermarket because John was going to cook but hadn't bought anything). He remembered suddenly that he needed to get his prescriptions filled before his trip. He started gathering prescription bottles, and I said "Do it from the list I made up, not from the bottles." He said no, he didn't trust the list, he wanted to do it from the bottles. I said "At least check the bottles against the list on the computer."

When he had left for the pharmacy I checked the bottles he had left on the table and found that he had called in a medication he has stopped taking and not called in his Sinemet. I called the pharmacist and corrected the error. This is a small town pharmacy owned by two pharmacists, so the pharmacist knew who I was. He even started to tease me that they don't take corrections, but I said "This is a tense subject at our house: whether John can manage his own prescriptions."

When John came home and we were eating dinner (which I cooked), I asked him if it was time for me to take over getting his prescriptions. He said no, not at all. I asked him what he was going to do differently the next time, and he said be more careful. I said that wasn't enough, that he needs some strategy such as using the list on the computer or at least keeping his current prescription bottles in a separate place instead of in a tray with many old prescription bottles. He didn't say anything to that.

The mistake would not have been a crisis, as he had enough Sinemet left for his trip. But I had worked it out so all of his prescriptions can be filled at the same time instead of spread out through the month, and I would hate to have him mess that up.

I think to him managing his own medications is as important a part of his sense of control as driving is. I don't think he is messing with them in any dangerous way, just occasionally taking an extra one of the Clonidine he takes to settle his ADD so he can sleep. But he has some system of three bottles of each medication that he doesn't want me to simplify. So I guess I will let it go--hopefully before it gets to be too much of a mess he will be willing to admit he needs help.

Sunday, September 14, 2008

Fairness

I’ve always been someone who considered fairness important. My mother’s mother favored her brother; my mother compensated by being compulsive that everything should be divided equally. I don’t think that is always the fair approach, but I do value fairness very much.

In fact, I didn’t vote for Jimmy Carter when he ran for a second term because I couldn’t bear his response when he was asked whether it was fair that poor women couldn’t get abortions because Medicaid didn’t pay. He said “Life is unfair.” No! If something is unfair, try to do something about it. My hero is Paul Farmer (who runs a medical clinic in Haiti) because he isn’t willing to accept that the world is unfair, he takes action to make it different.

My struggle now is with having to do more than my share. Instead of appreciating the small things that John does do, I fall into resenting that he doesn’t do more. It isn’t fair that I do lots of little things (like installing an arm rest we bought for his car) because he is so slow or might forget or will take weeks to get around to doing it. It isn’t fair that I have to handle all financial decisions and all family travel. It isn’t fair that I have to handle the major house issues. And then John talks to a contractor who comes to the house and thinks he is doing his part. Sometimes I wish he wouldn’t try to help, either because he makes too many mistakes or because I don’t want him to get credit for helping when his help doesn’t reduce the burden I feel. It is the responsibility that makes me feel most burdened, and now I have the added responsibility to double-check everything he does.

I don’t want to be like this. We went to Atlanta yesterday, food shopping and out to dinner. The trouble is, I noticed how he messed up when I needed directions more than I enjoyed getting to some favorite stores and eating Vietnamese food. It is childish to keep thinking: “It’s not fair!” But how do I convince the part of me that has worked so hard for fairness that it isn’t important any more?

Friday, September 12, 2008

Reclaiming myself

For the last week of the journaling workshop, we are supposed to write about reclaiming ourselves.

Reclaiming myself:

How much of me is going to be left, after what I am guessing will be 10 years of caregiving? I’m hoping not to have to give up my job, but I worry whether that will work. Right now John is pretty functional, and yet I already feel my freedom to follow my own path has been taken away from me.

A priest suggested that I ask myself where I would have hoped to be in 10 years if John hadn’t become ill, and then see if there was any small part of that dream I can hold on to. I would hope to have written a more important scholarly book and to have served a term as president of one of my professional societies. I would hope to have done an Ironman triathlon. I would hope to have built the program I run into a major. I would hope to live a simpler life, to have reduced chaos in my house and made my life more peaceful.

I guess I need to take that last one more seriously, because it is the one I can have. And in fact we are making plans to move in a year to a smaller house. As the appraiser commented today, the problem with a house with lots of storage space is that one accumulates lots of stuff. I keep clothes because they are classics or because I might wear that size again. I keep books because isn’t that what one does with books? I stock up on food and office supplies so I will have on hand anything I might need. I keep bills and bank statements and the like because it is too much trouble to sort out what should be kept. I keep china and decorative objects because my kids might want them. I need to change my thinking.

A friend’s mother used to tell her: “Someone else could be enjoying that right now.” Instead of holding onto things because I might need them in the future, I would like to learn to let go of anything that I haven’t used in years. I imagine that doing so is a step on the road towards becoming a person who radiates peace.

Thursday, September 11, 2008

houses

Yesterday we met with a contractor sent by the insurance company about our leaky roof. I'm convinced he figured out what the problem was, and he thinks the insurance company will pay for fixing the roof as well as the damaged ceiling. But they are going to have to redo part of the roof and replace drywall to repair the ceiling, so it is going to be a mess.

Today we went through the house we want to renovate with the maintenance person for the realty company and a contractor he knows. It keeps getting more complicated. No serious problems, just lots of choices. For example, they recommend Konecto floating vinyl flooring instead of laminate flooring.

Tomorrow an appraiser is coming to look at our current house. I have had a couple of people express some interest in it, and I would love to sell it privately rather than through a realtor. The first step is a good, fair appraisal. Not easy in this market.

John is showing some interest in it all, but I still feel burdened because I am afraid of making mistakes.

Wednesday, September 10, 2008

drifting

I helped host a visiting speaker Monday and Tuesday and I've been going non-stop. Today was nonstop until about 7 pm, but after dealing with a contractor about a roof leak I did get in a hilly bike ride with a friend, and I feel much better.

John and I met with the therapist Monday and I brought up how John is drifting, which he acknowledged. I asked him about what he wanted to get done, and he said first of all work on the historical research project he wants to do. I asked him if he wants to make a commitment to more exercise, and he said no. He takes a half an hour walk most days, goes to physical therapy once a week, and occasionally does the exercises at home. I wish he would go to the Silver Sneakers exercise classes that work on strength and range of motion.

I pushed him that he should start organizing and writing out information on his family heirlooms, and he said "give me two years before I start." I said we can't count on him still being able to do it in two years. I want to get rid of stuff, while he feels it is his connection to his family. I'm happy to keep things for the kids, but it isn't going to mean anything to the kids unless he writes down the information.

I asked him what he would do differently if he only had six months to live. He couldn't think of anything.

Sunday, September 7, 2008

communication without words

I attended a conference on environmental ethics this weekend. This morning I heard a talk on “Nature’s Voice and Human Flourishing: The Possibilities of Ecological Democracy” by Roger S. Gottlieb. Gottlieb wants to imagine a democracy that includes participation by non-human life, and so he spoke about how we can communicated with other living things even though we can't argue with them. He had a phrase I liked and thought I had written down, but I don't find it in my notes. It was something about how we communicate by aligning ourselves with the other. It struck me as an important seed for me, to think about communicating without words. Trying to imagine what it would be like to be John doesn't get me very far, because I would react so differently if I were in his situation. But I'm beginning to develop my sense of what he would want.

Update: I got a copy of the paper. The word is "attunement." He writes:

An “ecological” democracy would require that we learn to pay attention to what nature is saying to us: both by awareness of scientific knowledge and by a personal and collective process of attunement to plants, animals, and even ecosystems. By analogy this may not be totally unlike the attunement required for communicating with the severely handicapped, partnering with domesticated animals, or practicing truly sustainable agriculture. It may remind us of what political justice would look like between cultures so essentially different that they could not argue for their own interests in terms the other could understand.

Saturday, September 6, 2008

book: Three Dog Life

I'm reading A Three Dog Life, by Abigail Thomas. Her husband suffered a traumatic brain injury, which left him unable to care for himself and psychotic. She writes about how her life changed and about her dogs. To me, her story seems a bit muted, with the dogs for light relief. I would have liked to hear more of the raw pain. But that is me; I suspect what she provides is all that most readers want to hear.

I do like her honesty about the process of learning what she can do and what she cannot manage, coming to terms with her husband staying in a facility. She says she couldn't bring her husband home: "I wouldn't be Rich's wife; I would be his jailor and my own. This was a sacrifice that made no sense; I couldn't do it." She says it took her years to be able "to say the words I want to live my life without feeling unnatural, selfish, cowardly."

What seems to have brought her peace was feeling that her husband would have more appropriate (specialized) care at the facility than at home. I wish I thought that was usually available when needed.

Friday, September 5, 2008

support

I found a new support organization, which I am very hopeful will help me feel less alone. It is called the Well Spouse Association. I've been wishing I could connect with other caregivers who are below retirement age and caring for spouses, not parents, and I think this organization is where I will find them. I'm even tempted to go to their conference in Chicago in October.

If anyone is interested in the journaling workshop I have been doing, there is a new group starting October 14. The cost is $100. The information:

What: Join us for a five-week journaling workshop conducted through e-mail. Relieve the stress of caregiving and share. We’ll only say what we love in the writing.

Where & When: Offered through group e-mails, starting October 14, 2008 & January 13, April 14, July 14, and October 13, 2009. E-mail Lgood67334@comcast.net for information.

Why: Caring for oneself is as essential as breathing, but caregivers lose site of that fact. Journaling is a caregiver’s oxygen mask.

Who: Instructor B. Lynn Goodwin is a veteran of six years of caregiving, a freelance writer and editor and a former college and high school teacher.

Contact: B. Lynn Goodwin, Lgood67334@comcast.net. Put “Journaling” in the subject box.

Curious? Want to see if this would work for you? If you have not been in one of my groups, cut and paste 15 to 1500 words of your journaling into the body of an e-mail and send it to me. I’ll tell you what I love and what stays with me.

Thursday, September 4, 2008

managing life

There are a lot of complexities we have to deal with these days--what do people do when they can't manage? A friend was worrying about that, concerned about what she will do when her aging father can't help her with the things that she can't manage for herself after treatment for brain tumors and lung cancer. The latest is a large erroneous charge on her cell phone bill.

John said his 96 year old aunt isn't going to work on adding me as a backup for her power of attorney right away because she is struggling with her quarterly taxes. What happens when she can't manage her taxes any more? John and I pay someone to do our taxes, but there is a lot of work that has to be done to ready the material for the tax preparer. I'm getting close to taking over the last of the billpaying from John, because it bothers me he hasn't gotten doctors bills paid. I can handle his and my financial life, but I can't imagine dealing with his aunt's as well. He certainly can't manage hers. My mother has a secretary who comes once a week to deal with bills and accounts, but not many people hire someone.

Wednesday, September 3, 2008

The one I care for

Another writing for the journaling workshop, on the topic: "The one I care for."

John grew up in Houston, TX, where both his parents were schoolteachers. He had difficulty both with learning disabilities and with not fitting in with his peers, but his mother gave him a lot of support. His father died when he was in high school, his mother when he was in college. He has one brother but they became alienated from each other when John was in high school and his brother in college.

After college John joined the army because by signing up for three years he could choose to go to the language school instead of being drafted and sent to Vietnam. He studied Russian, hoping to later do Russian history, and that specialty got him a posting in the Washington DC area. When he had finished his time in the army he did first a masters degree and then a PhD in history (though not in Russian history because he had found the language so hard). He was in his mid thirties before he got his first full-time professional job.

That job was as a historian working on a contract for the National Aeronautics and Space Administration. John and I met when he read an article I had published and called me up for help in getting started in space history. We build a relationship long distance. When his three year job ended he moved to South Carolina where I had a permanent job and we married the next year. He had lived alone for 25 years before we married. He struggled for several years in temporary jobs before landing a permanent job at the local community college.

His professional ambitions didn’t come to much after an article that took him forever to write was rejected. But that made our life a little simpler, as I had a good job and it would have been hard for me to move for a better job for him. We had kids and our first child particularly had several problems that needed treatment and it was a struggle to manage everything. Two jobs, two kids, and a house was a bit more than we could handle, particularly during the period when a lot of my energy went into healing childhood wounds.

Looking back, I’m aware of the fights I didn’t win. I said I was not willing to have guns in the house, but he has a couple of nonworking guns that he inherited and they are in our attic. I said that was unacceptable to me, but he wouldn’t listen. I tried to get him to stop listening to books on tape while doing things with the kids, but he wouldn’t. I asked him earlier this year to start reducing the size of his wine collection (to buy less than he drinks or shares) and he refused. He would say I don’t give him credit for the things he did change, for example not having the TV or radio on when I am in the room.

John often made mistakes and sometimes he would get overstressed and not cope well, but he didn’t get really angry and he never once threatened to leave me. I got frustrated enough with his mistakes and inefficiency to push him to be evaluated for ADD, but then he wouldn’t take medication for it (except for sleep, which did help). I thought of it as a marriage that was balanced because we each put up with a lot—he put up with my healing journey and I put up with his forgetfulness and mistakes. Occasionally I could hardly bear it, as when he forgot repeatedly to take our son to his piano lesson. Thankfully he almost never forgot to pick the kids up from daycare or school.

John was interested in hearing about my inner journey, but he always said while he admired my ability to listen to what was inside me and to experience the world spiritually, he didn’t have that himself. When I was on a journey very specific to my childhood experiences that made sense, but in recent years I have tried unsuccessfully to push him to find his own way to grow. He always said he was content with himself; he didn’t feel any need to change.

It has made my life easier to have a husband who is never dissatisfied with anything. But oh I have wished he would try harder, hold himself to a higher standard. I wish he would try harder to fight his illness (for example by making exercise a higher priority). But he doesn’t fight me, and I should be grateful for that.

Tuesday, September 2, 2008

car shopping

We bought John a new car today, a Scion XD hatchback. It sits up a little higher than a sedan and the seat is more upright. For the first time since 1985 we don't have a minivan.

Toyota has a no haggle policy on Scions but I had printed out a blue book value for our trade in, which was considerably more than they wanted to give us. I made it clear to the salesman that we knew exactly what we were doing. John did the final insisting that we weren't going to compromise significantly on the price we wanted for our trade-in, and we got what we wanted.

Yesterday John made hotel reservations for our son's parents' weekend, only he made them for entirely the wrong weekend. But if I organize what he needs to do, he can still do things.

Monday, September 1, 2008

Meaning

Someone in a group I'm in wrote about struggling to find meaning in caregiving. That sparked me to write some thoughts of my own, which I've edited to take out my replies to her.

How to find meaning? In my own personal healing journey I've been able to find meaning by giving back to others. We can do that in all kinds of small ways. I'm so grateful simply when I run into someone who understands how bad it is—today a couple of colleagues who witnessed a form for me.

Can we find creativity in the ongoing situation? Again I'm thinking of my earlier healing journey, where I worked through painful memories and felt such satisfaction if I could find a creative way to get the feelings out. Is there anything that we can make beautiful? Is there a sense that finding ways to make the ill person's life as good as possible is a dance? Weaving a peaceful place around the pain and confusion.

Feminists have analyzed women's work as not valued because the same tasks have to be done over and over again. It isn't like building something—you sweep the floor and it just gets dirty again. Caregiving is full of such work. Someone has to hold the forces of chaos at bay. Celtic spirituality seeks to find the holy in the mundane, but that isn't easy to hold onto.

I recently read someone who wrote that from caregiving she learned to have faith in herself that she knew best, no matter what other people said or thought. But how can we be less lonely?

Sunday, August 31, 2008

secrets

We had lunch with John's aunt today, as we do most Sundays. She is 96 and gets around with a walker, but is fairly sharp. She moved here from Oregon about 15 years ago because John is her closest relative--she never married. She lives in an apartment in a nearby retirement community which does have different levels of care. Lunch is provided in the dining hall but she hires a driver to take her out to buy food and still makes her own breakfast and supper. Occasionally she comes to our house for supper but more often John picks her up and we have lunch together at a restaurant.

What worries me is that John doesn't want to tell her even that he has Parkinson's disease. She tends to be obsessive about health and he doesn't like it when she criticizes his food choices (she carefully eats a very low fat diet). He has been good about helping her himself when she occasionally needs help, not putting it on me. But it worries me that she is counting on him to continue to be available.

I told John that at least he should get her to change her durable power of attorney document so that it would name me as backup. He said he could do that, but I don't think he has raised the subject. I can't imagine doing it myself because I am so uncomfortable with keeping secrets that the only way I know to respect his wishes is to avoid any related subject.

Saturday, August 30, 2008

quiet weekend

I don't have Monday off--the university where I teach doesn't give Monday holidays (except Martin Luther King Day). But becaused it is a holiday weekend there is less on the calendar, so it feels restful. We were going to go look for a car for John today, but then we got interested in a Scion XD and the dealer will call us when one comes in in a couple of days. John has been driving a Dodge minivan, but it has over 100,000 miles on it (and we haven't found them terribly reliable) and John passed his driving evaluation. I have no guess how much longer he will be able to drive, but we have two kids with learners permits so we are likely to continue to have a use for a second car.

We think he needs a car where he sits up fairly high so it will be easier to get in and out. I like the Scion as the smaller equivalent of a minivan with the lowest cost and best gas mileage (the Honda Element is bigger and only seats two in back). I have a 2008 xB that I like very much. The Scion xB is the car that looks like a toaster, only the 2008 version they made larger and not quite so boxy. We were looking for an older used one for John, until I happened to look at the xD model, which is more of a hatchback and less of a miniature van and costs under $17,000 new with automatic transmission. The next step is to try one out and see if it is as easy to get in and out of as the xB.

I looked for some kind of listing of cars that are easy to get in and out of or are suitable for people with Parkinson's disease, but I can't find anything but reviews of wheelchair conversions.

Friday, August 29, 2008

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).