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.
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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Monday, February 23, 2009
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.
Labels: end of life issues, kids, Lewy Body Dementia
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.
Labels: family, Lewy Body Dementia
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.
Labels: family, Lewy Body Dementia
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.
Labels: family, Lewy Body Dementia
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.
Friday, February 13, 2009
how to prioritize
I ordered a chair for John's aunt, which she needs when she moves back to her apartment Monday. It was ready today but I didn't get the message, and I don't know what I would have done if I had. I don't have to be at every session of the conference this weekend, but it seemed fairly important to be there this afternoon. John didn't have time to go get the chair even if I had gotten the message. The store isn't open over the weekend (it is an oldfashioned office furniture store). Do I go pick it up Monday morning? It would disrupt my day, but I could certainly be back in time for my class. Tomorrow I should probably go to Florence's apartment when the physical therapist is there. I just hope that isn't at the same time as the session I most want to see at the conference. Should I cancel the commitment I have Monday afternoon so I can help with her moving back to her apartment? Or the commitment I have Wednesday so I can help John take her to the orthopedist?
Labels: caregiver stress, family, Lewy Body Dementia
Tuesday, February 10, 2009
getting things done
After letting out frustrations this morning, I went on to have a productive day. Most significantly, I filled out the college financial aid form with estimates, because our taxes aren't going to be done in time (one school has a Feb. 15 deadline). I can't believe it is done. The next thing I need to do is pull together a paper for a professional society meeting at the end of the month. This is going to be a hard week--I've got grading to do, we are going to see our son in a play Thursday night, and then I need to attend a local professional conference with sessions Friday evening and Saturday all day and evening.
I started the process of letting out my frustrations by doing an art work:
It is my character to get stuck on "it's not fair;" I may need to keep letting out those feeling now and then rather than thinking I can get over them. At least I get a kick out of creativity even when I am letting out negative feelings--the figure above is sculpted from paper pulp (like making homemade paper only not flat).
Labels: caregiver stress, Lewy Body Dementia