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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Saturday, March 14, 2009

spring break

This upcoming week is my spring break and I don't have any travel plans except to take our son on a day trip to revisit a college before he makes his decision. I'm trying to use the vacation to do things that have seemed too stressful to face. I've found most of the missing documents for our taxes, except the ones from Social Security (sigh). But when I went to look for one missing tax form I discovered I hadn't paid it. No doubt they sent the bill to the mortgage company for the mortgage we paid off, but I should have thought of that.

I was in a hurry to get this year's taxes done because of college financial aid forms but it has become clear that we won't get any aid, except at one school that offers scholarships for in-state students. I wrote some letters explaining our situation but our son doesn't qualify because of a savings account my father established for him, before considering parents' income. I'm glad our son has the money for college but it makes me feel badly about not helping him much.

The big task for the break is house matters. I was reading about basement refinishing last night and discovered that there is a better approach than what I have been hearing so far--wall and floor products that will not grow mold. I have an appointment with the designer tomorrow but the two contractors I called yesterday haven't called me back yet. We have an appointment Monday with the realtor who will list our current house and I had a good conversation with him on the phone. He used to be our travel agent so John feels comfortable with him. I'm dreading what he is going to say about what we should do to make the house look better, but I've already told him that is going to be a problem for us.

Wednesday, March 11, 2009

quiet evening

I have a sore throat--to be sick three times in one winter is unusual for me. I'm going to start taking vitamin D on days when I am not out in the sun. I'm going to encourage John to take it too--I think he was tested but I don't know if it was the right test. The information at the Vitamin D Council may be oversold but I think it is likely to be useful on such topics as which form of the vitamin and which test.

John tends not to get around to things until late afternoon or evening, so after dinner he took our son to Walmart to buy new watches. John says he is now convinced of the possible benefits of a watch that has three alarms (Timex Expedition is what I usually buy).

Monday, March 9, 2009

fog

John says that most of the time he is in a fog, but when he focuses on something he can concentrate. On that one thing and nothing else--he forgot our appointment with the therapist because he was trying to find a study abroad program for our son for this summer.

Sunday, March 8, 2009

retreat weekend

We went to our church's retreat weekend, at a retreat center we have been going to twice a year for more than 10 years. I got a call beforehand asking if I could help with registration, but I had an afternoon meeting and couldn't. I was really pleased when John volunteered that he could. But his involvement didn't continue. He went to the program the first evening and then refused to go again, saying it didn't work for him. I'm very sad about that because he says he wants to connect more with me and this was just the kind of thing I would like to share. If he got to meals first he sat down alone. He did go to a tea organized by a friend of his, but instead of sitting with the group he sat alone. I sat with him, though I had wanted to joint the group. Interestingly he said that after I left he sat with his friend and some other people joined them. Sometimes he isolates himself because he has trouble following conversations if there is any background noise. But he says he would rather be alone. I'm an introvert myself, but this isolation strikes me as a a dangerous direction.

Thursday, March 5, 2009

sociability

I went with John for his annual appointment with his family doctor this morning. There really weren't any issues to discuss that John wasn't seeing other doctors for, so the family doctor said come back in a year. John's cholesterol numbers were improved.

We went from the doctor's office to the Alzheimer's early stages support group, so we were 10 minutes early. We talked for a few minutes in the car and then when other people started to arrive I said I was going to go in and be sociable. John said he was going to sit in the car and read until time for the meeting to start; 2 hours was enough sociability. I was startled by that, that he sees socializing as such a strain. The person he likes best in the group arrived late, perhaps it would have been different if that person had arrived earlier.

Wednesday, March 4, 2009

taking initiative

Aunt Florence hasn't needed as much help recently and I am discouraged to see John settling back to not doing much. I don't think he went out of the house today except to take a walk--he probably read newspapers on his laptop all day. There are several issues I think he should be following up on for Florence. I know I get frustrated with him when I'm uptight about the things I'm not getting done. But there is so much to do.

Monday, March 2, 2009

snow day

We had a snow day here, which allowed me to catch up on some tasks I had been avoiding. As the roads were still slushy I drove John to get some lab work done (he grew up in Texas and has never felt comfortable driving on snow). For the second time in his life they had trouble drawing blood. This time he insisted they use the back of his hand after trying his arm once and that worked.

It was quite late in the morning and he hadn't eaten, but he had been drinking water. I asked the technician if it could be a result of low blood pressure and she said yes. But it still seems strange that he has started having problems--his blood pressure isn't that low and he doesn't have small veins.

He called the credit card company and it turns out the credit card I was worried about is actually in both names rather than having him as primary. We lowered the credit limit--not as much as I would have liked but it is some protection.

Sunday, March 1, 2009

snow

Serious snow, which is rare here. Lots of people retire to this area because we live on the line where it snows once a year. John was smart to go home after visiting Aunt Florence instead of to 5 pm church; it was distinctly slippery by the time I drove home after church. It is slushy this evening but the temperature is predicted to go down to 26. Luckily we don't have anything important on the calendar tomorrow.