John's busy day

John is proud of how much he accomplished today. He got forms and wrote out the kids' quarterly taxes (something I didn't think worth doing), he made an appointment with a new Parkinson's specialist (a partner of the one who moved away), and he had a student come to do yard work for an hour. Now he is working on buying tickets to go visit our daughter in April and has called me to the other room several times to help.

He is making an effort to do more, and I'm glad of that. He's also focusing more on what I wish for, that he would take more responsibility for his own quality of life (as long as he can). I need to be clearer in my own mind that I don't so much want him to help me with what used to be tasks we shared as to do things for himself. I think he would be happier and keep a better quality of life longer if he exercised more, did more things with friends, and found more support (eg. by talking to a minister-friend).

What about my day today? I had a good run this morning--I've been careful about stretching and the knee pain I had Monday was almost gone. I checked some bills from the trip over Christmas and sent a fax to my mother. I talked with a stockbroker and made an investment decision. I prepared and taught my course. I had coffee with a friend who is struggling with post-cancer issues. I found out how to appeal for insurance to pay for out-of-network therapy for our daughter and sent an email when I didn't get the person I needed to talk to on the phone. I answered emails, mostly from students. I worked on travel plans for two trips for myself and one for our daughter, though I didn't get tickets bought. I wouldn't call that a particularly productive day, though that is partly because I started more things than I finished and I find it stressful to have so many balls in the air.

my mother

On the trip, I noticed that my mother has started to look to us to tell her what to do, as well as asking the same question every few minutes. Her mother died of Alzheimers so it is not a surprise. What I've been realizing the last few days is how upsetting it is to have her no longer be the strong one, even though I didn't have a good relationship with her. I haven't turned to her for support and help in dealing with my situation with John, both because she tended to be so critical and because she didn't have much relevant experience--both her husbands died suddenly (one in a car accident, the other of a massive stroke). But there is still some child reaction in me that finds it scary that she is no longer bigger than me. In more adult terms, maybe I felt that at least she was there as a last resort. Not any more.

evening out

John looked up options and we ended up going out for dinner last night to a jazz club. We had a pleasant dinner, and I found things to talk about that actually concerned us. (His conversation topic of choice is to tell stories he heard on NPR.) At least until we were driving home, when I suggested that his concerns about our son might be a reflection of his own teen-aged experience. He didn't like that, but then he's never been willing to consider that there might be any unconscious influences operating in him.

Today I was in tears at church, feeling very depressed. I think one thing that has thrown me is that my mother's not-yet-diagnosed Alzheimer's has reached the point where she leans on me and my sisters. This has advantages--she can no longer remember things long enough to be critical. But it is a lonely feeling. I told someone who said I am the matriarch now (I'm the oldest). That's a scary thought.

John didn't notice I was low and wanted to spent time together. I had a bike ride planned with a friend and knew that would help my depression most. I did tell him that I feel like I have to take care of him, it isn't a partnership any more, and that he isn't supportive of me. He first tried to deny that I have to take care of him and to blame me for not telling him my feelings. I did come up with some examples he would accept. When he accepted that there is a problem with our relationship he said he wanted to work on it. I have trouble making much commitment to that idea because I don't have much hope.

I'm standing up to him more, trying to call him on how he isn't putting in the effort to make the best of his life as it is now. That may be unfair--he may not be capable of it. But he wants to be treated as a full participant and I'm not ready yet to fake that.

glad it is Friday

John's cough is gone today. I'm still not feeling well. I got home early this afternoon and tried to catch up on various things that need to be done. I got very frustrated trying to fill out college financial aid forms, and I'm afraid I took out some of that frustration on John when I asked him to call his retirement office (forgetting they close early on Friday) and then he kept telling me that the information I needed didn't make sense.

I'm pretty financially savvy, but I had no idea that John's retirement benefits have a value, as an asset, equal to the total that he contributed minus what has been paid out to him so far. On the other hand, an annuity with no payout after the person dies does not count as an asset. Thank heaven for kind people, in this case a financial aid person at the college that is probably our son's first choice. The good news is that I got the Profile form submitted.

disappointment

We were supposed to go to the first meeting of an Alzheimer's Association early stages support group this morning. But John woke up during the night coughing and didn't get much sleep. He called the doctor and took the first appointment he was offered, at the same time as the support group. The doctor said it was just a cold and gave John more codeine cough medicine. I had told John not to take it (we had some on hand) because it was likely to cause hallucinations but he took it anyway this morning and said he didn't have any problem.

This kind of thing is hard for me because if I had been the one who was sick I would have taken much more seriously my commitment to the support group. John was positive about the group when we signed up in December, so hopefully we will get to the next meeting in two weeks and he will like it. I would really like to have a place to share the confusion of this stage when John is ok and not ok.

Trip report

When my mother wanted to arrange a time when we could all go to Venice to scatter my father's ashes, I said Christmas time would work better for us. I forget how short Christmas vacation is for my kids--it was tight.

We did get a weekend at home after they got home, and then flew nonstop from Atlanta to Rome Dec. 23rd. It was really nice not to change--we got to Rome in time to go to the Vatican Museum the afternoon of the 24th and it wasn't crowded. I felt insecure at first in Rome--it is a scarier city than Berlin. But we had a nice apartment and cooked our own dinners, which reduced the stress. What I loved about Rome is that it was full of pilgrims--I like seeing art in churches where it still has the meaning that was originally intended. John had been to Venice before but not to Rome so he particularly wanted to see Rome.

John not badly thrown off by jet lag. The one time he had real trouble was the day we were leaving Rome. We had gone in separate directions because he wanted to see the Pantheon and our daughter wasn't up for that much walking. He got back to the apartment an hour later than we had planned because of problems that required him to spend a long time in the nearest bathroom he could find.

We flew to Venice on a very cheap Ryan Air flight and there we stayed in a very small hotel with my sisters and their families and my mother. My mother was subdued, but a lot of wine was consumed, which makes me uncomfortable. All 14 of us stayed together only for a few excursions so there weren't any problems with John keeping up. We tended to gather in the hotel breakfast room in the late afternoon and go out to dinner together.

My mother talked some about getting evaluated for Alzheimers, but no one talked with me about John. My family's idea of privacy tends to extend to not talking about what is going on. I focused on our kids--our daughter and I spent a lot of time walking through the city doing a little shopping and stopping to look in every church we came to. John mostly did what he wanted to do, usually with at least one of us along. I was frustrated one time when I went off to do the laundry and when I got back John had gone off to find the internet cafe and hadn't left me a note so I didn't know when he would be back.

I particularly enjoyed a side trip to Padua, where we visited the Scrovegni chapel, with frescoes by Giotto that have recently been restored, and the pigrimage church of St. Anthony. At that and several other churches that have relics where people pray for miracles, I prayed for spiritual healing for John.

We returned to Rome by train to see the scenery and then flew home the next morning. I was pretty tired of organizing by that point. John had problems when he got home (previous post). I'm not sure whether he interprets those as travel becoming a problem for him. With renovating our other house and moving we don't have any big travel plans for next summer.

Blogger is refusing to upload my pictures; I will try again later.

Quick update

I want to write about the trip, but I've run out of time again today. But let me write about being home because that is what is on my mind right now.

John has trouble with constipation when traveling. Miralax helps a lot (though he has trouble finding the right balance) but as has happened before things weren't going well when we got home. He felt he was impacted and might have to go to the emergency room, and he couldn't urinate either (that problem came and went). After the last trip I was reading about the issue and found that some people who went to the emergency room were sent home with a bottle of magnesium citrate to drink, so I suggested John try that. It worked in June, and so he was hopeful that it would help him again.

In the morning he sent me out to buy a second bottle, which was probably more than he needed. He was going to take our son to the dentist and back to school, but instead he had to stay home to be close to a bathroom all day. He was still glad to have solved the problem at home.

It meant that my day yesterday was spent driving our daughter to the airport (an hour each way) then driving our son to the dentist and then back to his school (an hour and a half each way). I was tired and what I really wanted was time to unpack and do laundry and it was a strain. Now I miss our kids and today I had a busy day back at work.

I had a sinus infection and cough before the trip but I got a second round of antibiotics before we left and it got better while we were away. But it got worse on the way home--either I caught a new cold from my youngest niece or the dry air of the airplane did in my sinuses. I'm so tired of coughing.

in haste

I've got 4 minutes left in an internet cafe in Venice--we haven't found anyplace here with wireless. The trip is going well--a lot to organize and the weather has gotten colder and colder but we have seen a lot we have enjoyed, both in Rome and in Venice. John is enjoying himself and doing things with the kids and that is what is important but sometimes I feel like I am doing all the work. I've got pictures but won't upload them until I've got better internet access.