sexuality

I said to John a few weeks ago that I didn't feel like we were partners any more, I felt I was taking care of him, and that was an issue for me in being interested in a sexual relationship. It was a day when I was very depressed and he hadn't noticed--that was actually the bigger issue at that moment. Since then we have moved back towards more partnership, both because he has been making more effort and because we have had to work together to deal with his aunt's medical problems. But sexuality is complicated these days on all sorts of levels. His participation is changed by stiffness as well as by the effects of Parkinsonism that Cialis no longer fully helps. And I'm just in the last few months seeing more change in me as a result of menopause (I'm hopeful I'm finally past the on-again off-again stage). He asked if we should give up and I said we didn't have to give up completely but let's see it as a diminishing part of our life rather than fighting the changes.

what happened to this week?

Yesterday evening and all day today John and I were at an Enneagram retreat. Neither of us had worked with that system before--I had experience with Myers Briggs, he has never done anything like this. I enjoyed it; I like opportunities to listen to what is inside me, particularly if they are experiential more than didactic. And knowing that I am a type 1 does help me understand my patterns. John says he enjoyed most of it, though he isn't sure what type he is (he thinks maybe 4, I was leaning more towards 7). He was engaged. It was a nice small group--12 participants, many of whom we knew from UCC church.

John got angry and defensive Thursday when I went to find something in his aunt's apartment he hadn't been able to find. But at least some of the time he is able to divide things so that I do the complicated parts and he does the more day-to-day stuff. He is rising to the challenge and getting more done than he was a few weeks ago, though I did spend an hour Friday driving to pick up another copy of an xray because he wouldn't have thought it worth doing.

We have an appointment to meet with her doctor Monday afternoon. My greatest wish is for some kind of timetable--if things go well it might take her this long to get back to her apartment. But I don't think I will get it; no one knows how a 97 year old in exceptional health will respond. There are so many complicated issues. A medical supply company called about an order from the nursing home for a manual wheelchair for her and I said wait a second, Medicare won't pay for the power chair she will need if she gets a manual chair now. Pure luck that I know that.

neurologist visit

John has an appointment with the neurologist today. The neurologist is gradually getting to know John better and ask smarter questions. He asked John about constipation and sleep and in detail about exercise and he asked me if I thought going back to 5 mg. Aricept had made a difference. I said no--I saw a benefit with the 5 mg. but not a significant difference between 5 and 10, though that may be because John is less depressed recently. John felt the 10 mg. badly affected his balance and it is better again now that he is back to taking 5 mg.

John is concerned that his walking is getting more awkward. I guess that is the one place where there is clear progression in the last three or four months. I asked the doctor if it was time to get a handicapped parking permit and the doctor said yes and signed the form. That feels big to me--we are in a new category--but John seemed to just see it as a convenience.

The next question in my mind is when to start Namenda, but thought I would wait and ask it of the movement disorders specialist this summer unless John starts to have hallucinations, which would be a reason to start sooner.

back to work

I had yesterday off but today I had a busy day, as I'm co-teaching a course that meets Tuesdays from 2 to 4:45. John went to physical therapy and had lunch with a friend before going to visit his aunt. It was after 5:30 pm when he got back--she had asked him to clean her CPAP machine, and her way of doing it involved taking apart every little part. I suppose we should be hiring someone to help her with such things (and mail and laundry and etc.) but it is hard to think clearly about when we have no idea how long she will be in the nursing home, if all goes well. I don't think the doctor has any idea how long healing might take, given her advanced age but exceptional health and determination. But with no idea whether she will be in the nursing home for more than a month or two it is hard to know how much to set up. She was originally thinking she would be there a few days; I'm not sure she has accepted that it will be more than a few weeks.

I was moved by the inauguration, which I listened to on the radio (I would rather imagine it in my head). But there was one point where the speech fell into something I preach against professionally. Obama said: "We will restore science to its rightful place, and wield technology's wonders to raise health care's quality and lower its cost." Technology isn't going to provide a magic solution to avoid hard decisions about health care. And a 97 year old woman getting a drug that costs something like $700 a month to encourage bone growth is just the kind of case that makes it so hard, even though it could save money if it gets her out of a nursing home back to her apartment.

Phillips Brooks asks us not to pray for easy lives but to pray that we might be stronger women and men:
Pray not for tasks equal to your powers.
Pray for powers equal to your tasks.
Then the doing of your work will be no miracle
But you will be a miracle.
And every day you will wonder at yourself,
At the richness of life which has come to you by the grace of God.
(Herald of Gospel Liberty, 1920)

When I heard this quote Sunday I had the impression it was from Martin Luther King, Jr. It turns out instead to be from the author of "Oh Little Town of Bethlehem," a 19th century Massachusetts clergyman named Phillips Brooks. I still find it inspiring to me both in my own struggle and for what we face as a nation and a world.

Caregiver feelings

On a discussion board I read, someone wrote:

It has been more than 6 years that I’ve been d.e.v.a.s.t.a.t.e.d. by the
changes in his life -- and in mine.

• dazed
• emotional
• vulnerable
• anxious
• shattered
• torn
• angry
• terrified
• exasperated
• drained

sigh

John is next of kin to his 98 year old aunt Florence, who fifteen years ago moved to a retirement community near us. She's actually cognitively pretty sharp but tends to be obsessive and critical so he has refused to tell her even that he has been diagnosed with Parkinson's disease. I did get him to have her list me as backup on her health care power of attorney. Today she called John to say she needed a ride home from the hospital--they were releasing her after determining that she had fractured her pelvis.

I had an important work meeting and John said he didn't need me (and I realized I needed to let go quickly of "if I don't do it myself it won't get done right"). He took her back to her apartment but the retirement community administrator thankfully decided Florence needed to be in the "health care center" (nursing home) and they took her to a room there. John was pretty shaken by the whole thing--his parents both died when he was in high school and college so she has been his closest family member for a long time.

John came home for supper and then we both went back to see her. I wrote down the long list of Florence's food requirements and the precise times when she wants her medicines, as well as a long list of things to bring from her apartment tomorrow. She was worried that she only had one slipper because she saw it as very important that she not put her feet on the floor. Actually, it is going to be a while before she gets out of bed. John was very glad I was there; I think he was better able to manage the crisis stage this afternoon than the details that she was thinking about this evening. Unfortunately the doctor she knows best is on vacation for the next week. In this small town the doctor covering for him is John's doctor, so at least we know him, but he doesn't know Florence well to mediate between her precise ideas of what she needs for her health and what is realistic in a nursing home.

good news

We heard today that John was approved for Social Security disability. He applied, was turned down, we filed an appeal ourselves, and now he is approved. That is within six months of when he applied. It is a little more than 6 months from his date of disability (last May) but that is because we waited several months before applying. Someone told us to wait until his disability was approved from his state goverment job, which turned out to be bad advice (particularly because he was 62 years old and thus eligible for early retirement).

The people we have dealt with at Social Security have been wonderful. Today, the person who called explained to us that because we currently have two children drawing benefits, we are getting more from retirement than we would get from disability. When our son is finished high school in May then the total family disability benefit will be higher than the retirement benefit. So they will send us papers for John to sign to stay on retirement until June and then change over to the disability that has already been approved. That then gives him about $300 a month extra for the rest of his life (he is currently getting just over $1,000 a month so that is a significant increase).