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, December 22, 2009

I miss having someone to share the work

Yesterday I went with John to the urologist, who again recommended more surgery for his benign prostate enlargement (or the scar tissue from the first surgery). They did say they could do it without general anaesthesia. John wants to try a dilation procedure first, but if that doesn't last very long he wants to find a high-ranked doctor farther away. Sigh.

I'm wishing for help with Christmas. Our daughter and I went and got a tree today and I got it up, but no one has offered to help with decorating it so it isn't decorated. John hasn't been feeling well this afternoon/evening, so I shouldn't complain about today specifically. But more generally, Christmas is too much work to be trying to do mostly on my own. I'm ok with cooking a traditional meal even if I have to do most of the cleaning up too. But even if my daughter will help me some with decorating, having to do the cleaning up makes the decorating seem too hard. I need to think about what I would want in a simpler Christmas.

Tuesday, December 15, 2009


This week our focus is on moving John's aunt's things out of her assisted living apartment, as she has moved permanently to the nursing home at her retirement community. We have one helper who is very good at sorting through things and making decisions. John is not so good at that but he did arrange several people to pick up things.

I've been trying to set up an alternative for our son, who is in his first semester of college and flunking out. I wanted to make sure he had another choice and doesn't have to stay home and deal with his father's illness unless he chooses to. And today I heard the good news that he is accepted to what was originally his second choice college for the spring. I'm hoping he has had enough time to learn his lesson, but I think a fresh start will be a relief for him.

John was complaining yesterday that I don't tell him things. Actually, I make a pretty good effort to keep him informed. Sometimes he forgets, sometimes I don't tell him because I don't want to spend the time and answer his questions and have him second-guess me, and sometimes I don't tell him because of my resentment that he doesn't share the burdens more. He said he thinks I am angry at him for getting sick. I said I am angry at what has happened to my life but he is just going to have to live with my strengths and weaknesses. I'm good at working things out practically, but I'm sometimes going to be impatient or irritated.

Friday, December 11, 2009

interesting study

This isn't information I need yet, but it is so clear I thought it worth linking:

Clozapine is the only antipsychotic shown to be efficacious for the treatment of PD psychosis, although quetiapine is more frequently used because of convenience. Concerns about antipsychotic sensitivity in DLB patients may prevent antipsychotics from being tested further in this population. There is also preliminary evidence that cholinesterase inhibitors may have antipsychotic properties in both PD with dementia and DLB.

source: "Presentation and Management of Psychosis in Parkinson’s Disease and Dementia With Lewy Bodies," Daniel Weintraub, M.D., and Howard I. Hurtig, M.D. Am J Psychiatry 164:1491-1498, October 2007 http://ajp.psychiatryonline.org/cgi/reprint/164/10/1491

Wednesday, December 2, 2009

end of my rope

Moving was hell. We had two particularly intense two day periods, when the professional movers came and when some people with pickup trucks helped us finish clearing out the old house. Then I pushed to get as much unpacked as possible before Thanksgiving. I thought things were settling down now, or at least I could focus on my job, but now John's aunt who lives in our town has to move from assisted living to the associated nursing home. Clearing out her crammed apartment is going to be a nightmare.

Right now I need to go check on her. They didn't have a room ready for her in the nursing home until today so I had to arrange round the clock care for her. John was coping with helping her until the bad news came, but then last night he said he couldn't bear to go back.