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.

-------

Tuesday, March 31, 2009

decluttering help

The woman who is helping us declutter worked for four hours on Monday and seemed to work well with John. I had a more difficult time--I felt judged by her. Some of that is me being defensive. But the important thing is whether she can get John to work through his stuff. She will come twice while I am out of town.

I'm feeling overloaded with working on this house and a meeting with contractors coming up tomorrow about the other house. And issues at work and going out of town to a conference.

Sunday, March 29, 2009

decluttering

Yesterday we met with a woman about decluttering our house. The idea is that she is an expert on how to make it look good so it can be showed and sold (I have some hope--the lake is predicted to come up another three feet in the next week). She was very clear on John's stuff that needs to be cleaned up, and he seems to accept that he needs her help. Some of it was things that I have struggled to get him to clear up for years, such as at least 50 prescription bottles in the kitchen. But she also focused on some things I long ago stopped thinking about, such as the piles of his clean clothes because he washes them but doesn't get them put away. I feel great relief that someone else will be pushing him, not me. I have to admit it is worth the $15 an hour she is charging us. We can get an undergraduate for $8 an hour, but the undergraduates are in no position to tell John what he needs to do. Now I need to get more of my decluttering done so she doesn't have to work with me. I did pack up another 10 boxes of books to give away and I think I have homes for them.

Friday, March 27, 2009

an evening out

John suggested going to a dance performance last night and initially I was uncertain because I knew I had to be up late the night before and get up early that morning. But when a colleague offered me tickets he couldn't use we decided to go. It was different than anything I had seen before--ballet technique (toe shoes) to jazz and bluegrass music.

John is usually pretty conservative in his tastes, but he seemed to enjoy it a lot. I actually had more trouble wrapping my mind around it because I grew up with such a conservative idea of ballet (my mother had a friend who danced for New York City Ballet in the 1960s). I'm glad we went.

Thursday, March 26, 2009

neurologist appointment

John had a neurologist appointment yesterday and I went with him. John reported that he felt things were stable, except that his feet and legs are more swollen (which is associated with Parkinson's). The doctor suggested Lymphedema Therapy for that and will check whether the physical therapist John already sees can do that. I was very pleased to have a doctor suggest something that could help without taking more medication. I think John's walking is on average worse, he shuffles more, but the doctor thought the swelling was contributing to that. I bought John at least 8 pairs of socks with no elastic at the top but he isn't currently wearing them--he says he lost them. That probably means they are in one of the baskets of his clean laundry either in the family room or in the laundry room.

The doctor was concerned about fall prevention. John said the last time he fell was over Christmas. It startled me to have the doctor see the possibility of John going rapidly downhill--I've been focused on not knowing whether that will happen with Aunt Florence.

Tuesday, March 24, 2009

sadness

John said he wanted to go to the therapist by himself yesterday and he says he spent most of the time in tears. That his aunt had to go back to the nursing home makes it so much more uncertain that she will be able to continue to live the way she has been living. And that reminds him of the death of his father when he was in high school and of his mother (from injuries sustained in an auto accident) when he was in college.

I'm thinking of going onto an antidepressant myself. House renovations and then moving this summer, and putting this house on the market, seem like more than I can bear. And we may well have to deal with Aunt Florence's stuff as well. She is now wondering if she should move to the assisted living section of her retirement community, which would mean she would have room for much less.

Sunday, March 22, 2009

spring break is over

My focus has been on our kids but one is now back and school and the other leaves tomorrow. I did look at my books with them and to my surprise I am able to imagine getting rid of half or more of my books. I need to call the person who was recommended to me to help us declutter our current house before putting it on the market. I'm a bit daunted because while I particularly need her to help John, I have a lot to do myself. Another person who knows how to trim the bushes to make the house look best is coming tomorrow, so I've got that task underway. I don't see how I can do everything that needs to be done, even hiring people to help.

Friday, March 20, 2009

who knows

John's aunt Florence is back at the nursing home. John took her to the orthopedist, who said that the problem is arthritis in her back. But it was giving her so much pain she could no longer manage in her apartment with a walker. The idea is that with some rest she can get back to her apartment. But is this going to be the time she goes into a downward spiral?

I took our daughter to her first gynecologist appointment and met with the realtor about this house. His suggested price is what I was hoping, so that is a bit of good news. Much to juggle.

Wednesday, March 18, 2009

complications again

John took his aunt to the local urgent care last night because she had so much pain. Urgent Care had taken an xray Sunday and said there was no fracture, but in the meantime they got her previous xray and a radiologist read them and found two partial fractures of her pelvis in a different area from the one in January. She seems to be managing ok at her apartment. John asked me to go this evening help him talk to her about getting more help. It turned out that John didn't know that she is already using some help from aides. But then again she had washed out her own underwear today. I stressed that I think the best option for her is to stay in her apartment with help from aides. She hated the nursing home unit of the retirement community so much.

I'm trying to remember that it may be true that if I don't do it myself it won't get done right, but that is ok.

Monday, March 16, 2009

moving forward

We met with a realtor today about listing our current house, which feels like a big step. I had told John that I might be late but he could help the realtor get started. I was early, which was a good thing because John didn't get home until half an hour after the appointment time. It looks like it won't be too hard, as we will be listing the house as is to start.

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.