I'm here

We had at least one of our kids home all summer but now they are both back at school. My daughter helped me a lot with decisions and shopping for the house renovation (a big help because John shows no interest). I taught both kids to drive (talk about stressful). The house renovations have been intense and are still not done--hopefully by the end of the month. Our current house hasn't sold, though there has been some interest. I've been posting renovation pictures on Facebook and instead of blogging Twitter has been about my speed (what I post there shows up on Facebook too).

John fell asleep at his computer and compressed the nerve in his elbow. The result was that he lost a good part of the use of his better hand. It is supposed to get better, but more than a month later it has improved only a tiny bit. He needs me to change his socks for him and cut up his meat. I wasn't expecting to be here already.

My tentative plan is to move the second week of October. Somehow. I am teaching a full load this fall.

I am grateful that John has been able to continue to take responsibility for helping his 98 year old aunt. She took a bad fall a couple of weeks ago and I met the ambulance at the emergency room, as I knew it would take him too long to get there. But he managed after that. Amazingly, nothing was broken and after a little more than a week at the nursing home she is back in her assisted living apartment.

finding meaning

When I'm low I feel discouraged that I'm not getting anywhere in getting to acceptance of my situation. I don't want to just endure, I want to find meaning in it. I find when I am stuck talking to someone different can sometimes help me think in new directions, so I went to talk to the minister of my church today. Something clicked me into trying to make a list of the different ways I could deal with how my life is changing. One of my philosophies of life is that there are always more than two alternatives.

• I could be miserable and just endure and take antidepressants (I really don't want to do it that way)
• I could feel a calling to this new life, to the challenges I face (that is what I want but so far it isn't happening)
• I could be patient and wait for the meaning to gradually develop after I have been doing it for a while (people seem to think that is the most likely, but I'm not patient with it, it feels like just being miserable)
• I could see this as a new stage in life where instead of measuring myself by concrete accomplishments I need to be aware of the more subtle ways in which I make some contribution, some difference in the world.

I see potential in that last one because I've been struggling not to fall into feeling that somehow I'm being punished or taught a lesson by losing so many of my hopes for the future at once (John's illness and the almost-definite dismantling of the program I've spent the last five years building at work).

I'm pretty good at looking for opportunties when things don't go the way I expect; this would be a similar mindset of seeing the more subtle good that comes from what I'm doing. My program may end but the professors who taught in it will take those ideas into other courses. John and I can't do as much as I had hoped but what we do is still a role model to our children.

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.

acceptance

I feel like I am reaching a place of more acceptance. I said to a friend today that caring for John feels like finishing what I started. We've been together a lot of years and I will see it through. That lets me feel I have some choice, but my reason for my choice is a quiet one, not some crushing obligation or expression of perfect love. I think it helps that I'm beginning to see more of the shape of the stage we are in instead of just finding it confusing. John has planned two trips on his own in September and October. One is to Texas to see a friend and visit his parent's graves. He is finding ways to do things while he still can; I don't have to do it all for him yet.

sharing tasks

When we met with the therapist today, John said he felt I see him as incompetent. I said it isn't that I see him as incompetent, but I do find I have to do almost everything, and that comes to almost the same thing on a practical level. As we talked back and forth about his not getting done things he said he would do, he said: "I don't think you understand that it took me all evening to load the dishwasher." There you have it--I can't expect him to do very much because the disease makes him so slow. To me, that makes my dilemma clear. I could load the dishwasher in 20 minutes, probably less(we had one guest for dinner last night and a slightly more complex meal than usual) .

I suppose I need to learn to count effort, that he spent all evening doing a family task. But I'm still panicked about how can I possibly do everything myself, particularly when I go back to teaching next week. So it scares me that he can get done so little. I know I should encourage him to do as much as possible. But isn't there a better use of his time than spending all evening loading the dishwasher? I don't think there is; he is now both loading and unloading the dishwasher when I cook after a conversation about his doing more than his share of things he can still do.

I know my attitude is lousy. I'm thrashing; I'm just not good at this. But the only way I know to get to a better place is to be honest about my feelings.

Feminism and caregiving

Feminism saved me when I was young. I grew up with abuse from my mother and grandmother, and my reaction was not to want to be a woman. By the time I got to college, planning to major in astrophysics, my way of being was to be one of the guys. Feminism saved me from being totally male-identified--it gave me a way to accept being a woman without becoming my mother or grandmother.

As a teenager, I didn't expect that I would ever marry or have children. I married only in my early 30s, with the understanding that John and I would equally share household tasks and with a prenuptual agreement (which my lawyer now tells me will provide some protection for my assets if we need to get John onto Medicaid). So into order to find myself in this new challenge I want to think about whether there is a feminist approach to caregiving.

I did a little web searching on the topic. I may just have to track down a special issue of a journal on Fundamentals of Feminist Gerontology. The trouble is, the focus is likely to all be on daughters caring for mothers. I found one article that argues that too many studies focus on how women put their own health at risk while caregiving and asserts there should be more focus on the autonomy of older women rather than their role as caregivers. Not what I am looking for.

There is certainly need for a feminist call for change in the system to give caregivers more choices. I read a blog by a gerontological psychiatrist in England and government funding of long-term care makes a big difference. If Medicare covered long-term care for people with dementia I would be in a very different situation. Even leaving aside the issue of how to pay for it, in a rural area like the one I am in nursing home care for people with dementia is way behind best practices. I'm guessing I may end up keeping John at home because nearby facilities won't be able to handle the behavioral challenges constructively. Feminism tells us that we need social solutions to problems like caring for people with dementia, not just private solutions.

But there are other feminist issues besides having choices. Caregiving can be a way of asserting identity for minorities. For wives who are caregivers to their husbands, caregiving is an odd change in roles where we have increasing power over our husbands, want it or not. I feel that already when I go with John to a doctor's appointment and the doctor listens to me. To claim to know what is best for another person is a mix of power and burden. The issue of identity and the issue of power come together when I increasingly become the sole decisionmaker and choose to handle things my way. In a posting in an email group today, a woman wrote that she was going to ignore a doctor's advice on a particular issue because she knew more about her husband than the doctor did.

The interesting question would be what would we do if we had a choice of caregiving at home or a facility that followed the scientific best practices? Would we assert that local knowledge--our personal knowledge of what will work with our spouse--is better than standardized best practice? I think many people in the email group would. Is that because we are socialized to feel responsible for providing care? Or is it a rejection of rationalization and the scientific approach, instead claiming the value of our local knowledge and culture?

I don't know if any of this makes sense yet, but it feels like something that is important for me to explore.

end of the trip

Our travel went smoothly, except that as we were waiting in line for passport control our son said he felt queasy. It was about 8:30 pm when we got our rental car. Luckily we had planned to spend the night at my mother's house half an hour away instead of driving the two hours back to Cape Cod. As I stopped the car at my mother's house, our son threw up, a lot. I had given him a plastic bag, which turned out not to have any holes in it, so it wasn't a huge mess. I got him to bed with a bucket. Apparently he threw up several times during the night but I was so soundly asleep in the room next door that I didn't hear him call out loudly "help" until about 3:30 am. After I had helped him I had some trouble getting back to sleep, but I eventually did.

John woke up early for him, around 7, and very groggy, but he wanted to go with me to do some shopping. I thought that one main point of the shopping was that he had lost his pyjamas, but when we were part way there he said he had found them in a different part of his bag than where he usually put them. We weren't going to head to Cape Cod until mid afternoon so our daughter could get together with a friend first, so it didn't matter much what we did. I have a very sore (though not red or runny) eye and my doctor kindly called in a prescription for me for some antibiotic ointment--I'm hoping it will be better in the morning.

What we didn't fully realize is how much extra traffic there would be around Boston because of a parade for the Celtics. We got on the road for Cape Cod about 3:30 hoping to be early enough not to hit too much traffic, but it was bad. John said he was feeling less and less groggy but by the last hour of the drive I was running out of cope and hungry.

I said I was exhausted and once we got to the house someone else would have to take over. John said we didn't need to stop on the way, he would go out quickly and get some things for dinner. I further said I couldn't handle eating later than 7 pm. He said he thought that wouldn't be a problem. I ate some bread and cheese, but I still feel just desperate to go to bed. I'm going to try to stay up at least until 8.

It is now 6:45 and he sent our daughter up to ask me how to cook the fish. John for several years did almost all the cooking, but I did specialize more in fish. I'm actually feeling a little better, so the prospect of dinner at 7:30 doesn't feel as impossible as it did. I asked our daughter to focus on helping him (she's distracted by trying to set up Skype so she can talk to her boyfriend with a webcam I just got her). Whatever happens we will learn from it.

vacation

We made it to Cape Cod yesterday evening, through remarkably light traffic. My family has a house here, and for about 15 years John and I and our kids have come here in June, before most of the rest of the extended family gets here and before the town gets crowded. It will be interesting to see what changes I notice in what John can do from a year ago. Yesterday when we picked up our daughter and had to deal with lots of family, he was doing a good job. So far what I have noticed here are physical things: carrying the bags up to our second floor room and making his bed were more difficult for him than in the past. If the second floor room becomes too difficult there is a first floor room that was my room when I was a teenager that we can use next year.

Thank you, Joann, for the idea about medications. The first time I tried to organize John's medicines, he wouldn't let me consolidate them because he said he wanted to have three partially full bottles of each prescription (one extra was for travel, the other was so if he dropped and spilled a bottle of pills it wouldn't be a full one). I bought him a weekly pill organizer and told him if he used that I wouldn't have to take over managing his medications as soon. He has now filled it a couple of times himself so I have hope he will continue to make the effort to use it. I will look into having the pharmacy do it for him, but I have a feeling he may not be willing to give up that much control yet.