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, February 28, 2009

away

This trip has been somewhat restful, as I'm less involved with this professional society than with the other two (and also because I drove rather than flying). John took my suggestion and took Aunt Florence out to dinner and said that went smoothly. I don't yet worry about John managing while I am away, but I do worry a little about his spending money. He only spends money on audiobooks and wine, but he has very high standards in wine. I've tried a little to get some control, but he hasn't gone along. I suppose I should push the issue more and say what can we set up now so that it isn't a problem later.

Tuesday, February 24, 2009

feeling a little better

But it is all so complicated. The non-rolling desk chair I got Florence didn't come with the kind of arms I had ordered, so they sent a different, bigger one. Turns out she likes the first one better. Her scooter finally came and seems to be satisfactory (except it is hard for her to plug in) but I had to leave my class to help her because John had an appointment he had to go to. I'm not sure how that became the plan, since his appointment wasn't that important, but I thought having one of us there when the scooter came was more important than he did. I need to remember that even if it is true that if I'm not there it won't get done right, sometimes it is ok if it doesn't get done right. I'm still feeling very pressed; I have several high priority tasks to get done tomorrow before I go out of town very early Thursday morning.

Monday, February 23, 2009

I give up

I had the stomach flu in the early hours of Sunday morning. I was through the acute phase so I traveled home Sunday afternoon but it was hard and I've felt very weak today. And sore--I strained a muscle under my breastbone during the acute stage. Over the weekend I cooked healthy food for my daughter, who had a cough, and encouraged her to catch up on sleep, but she reports that today she was sicker and didn't go to her classes. I'm going away again Thursday for a professional conference in Tallahasse, and my two commitments there are Thursday and Saturday afternoons so I can't shorten the trip even though I am driving. I did try to make the first step towards setting up for our son to revisit a college, but they are on spring break the same two weeks he is. I haven't been able to deal with calling about missing forms for our taxes much less with taking the next step towards house renovations. And John is worried about our sex life.

Saturday, February 21, 2009

weekend away

I'm in Massachusetts for the weekend with our daughter, who was very glad to see me. We talked some about death--some of her classmates went to the wake for the girl from her school who died, and it was open casket. That death was such a tragedy it is not surprising that students said the body didn't seem real.

I said that I believed that for older people a good death is possible. Our daughter thought Florence would be a good example, I think because she has had a full life. I said I wasn't sure Florence was going to feel ready. We talked about my father's death, which was sudden, the way he would have wanted it. We didn't mention John, but it still felt valuable to me to talk about death as something that can be natural and peaceful.

Tuesday, February 17, 2009

I hope it works out

Aunt Florence is back in her apartment--John and a student moved her. I dealt with the chair and scooter issues, but I left John to work on arranging an aide and it didn't get done. I'm also worried that he didn't remind her of the things the physical therapist told her not to do. She isn't willing to accept that she can't keep living exactly the way she was living. And he isn't willing to push her to recognize that. I just worry she will try to do too much and fall again.

I'm going with them to her orthopedist tomorrow because I don't think either of them will push the doctor for the information she needs.

Monday, February 16, 2009

progress

John picked up the desk chair without wheels I ordered for Florence, though he didn't notice it was made up with the wrong kind of arms. He has arranged people to help him move her tomorrow. He was going to arrange for an aide, but the social worker told him the home health service would cover it and he didn't remember/understand that the physical therapist had said Florence would need more than that.

I got letters about our situation mailed to the college financial aid offices and got my first round of grading done. Talked to our daughter, who is upset about the death of a student at her school. I'm tired. We are doing the best we can.

Sunday, February 15, 2009

making progress

I was worried about whether John and his aunt and her helper could get her apartment ready for her to move back this upcoming week, but the physical therapist was happy with their progress. There are enough things still to do that day for her move has been moved from Monday to Tuesday. The physical therapist says she can borrow a wheelchair but I've ordered a transport chair. John has a lot on his list to do tomorrow and I can't help much. I will rearrange my schedule so I can help him take her to the doctor Wednesday.

Saturday, February 14, 2009

life is uncertain

A member of my church was killed Friday night; her husband has been arrested and accused of murder. Her 7 year old son is with his much older brother. We live in a college town in a rural area--the last murder in this town was in 2004. I didn't know her well, but it makes me feel there is so much pain in the world.