Trying to get John's aunt moved this week. She holds onto stuff worse than John. And I spent much of today dealing with the house we are renovating. I'm glad I was there when the rental manager went through--I don't think the students will be getting their security deposit back. Tired.
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.
-------
Monday, May 11, 2009
Thursday, May 7, 2009
houses
The meeting to sign the contract for renovations on the other house just got postponed until tomorrow, when we are also meeting with the realtor to sign the papers and list this house. And John's aunt Florence got a place in assisted living, so she will be moving out of her apartment in the next few weeks. The assisted living place smaller, but it is still a one bedroom apartment, so I don't know how much stuff she will be giving us. The timing is actually fairly good in terms of needed to focu on her--at least we've pretty much finished getting this house ready to show. But more things to deal with...
Labels: family, Lewy Body Dementia
Saturday, May 2, 2009
avoidance
Thursday John avoided actually working with the woman who was supposedly helping him declutter for three hours, before he finally started with her in his office (she worked on other things, but his things are most pressing). The good news is that he acknowledges that he wouldn't be getting it done without her. And she is beginning to get him to accept the idea that someone else might do the things he does his way, such as his laundry.
We had someone take a load to the dump and it has become more visible that we have made a lot of progress. And we are taking over 10 boxes of books to a booksale tomorrow.
Labels: Lewy Body Dementia
Tuesday, April 28, 2009
old pictures
John said that as he sorts through things it makes him sad to see old pictures of us. I asked why and he said we were so much closer then. I thought for a while and said but I feel like I was only half alive then (because I have since done a lot of work to heal from childhood trauma). He acknowledged that. I wish he had more ability to join me in that new life.
Labels: Lewy Body Dementia
Sunday, April 26, 2009
race
I went away for one night to do a triathlon Saturday morning (4 hours 6 minutes to swim 1500 meters, bike 24 miles and run 10K). I was happy with my results (I'm slow but I enjoy racing) and John seems to have picked up my energy a little and worked with me more today. I got my home office straightened out and we improved the layout of the downstairs family room.
Labels: Lewy Body Dementia
Thursday, April 23, 2009
still decluttering
I was hoping to have the house ready today to put on the market, but John's decluttering helper cancelled on him yesterday and is away for a week. John told the realtor he needs another two weeks. He is definitely making some progress. I just want it to be done, though I've still got work to do in my office.
I'm signed up for a race early Saturday several hours away and haven't made a hotel reservation or anything. Unless something comes up that makes it seem wrong I think I will put everything together tomorrow and go do it. It would get me away from all the stress for a day.
Labels: Lewy Body Dementia
Monday, April 20, 2009
advanced directives
I went to a program this evening on end of life issues put on by our community interfaith organization. The two panelists were a hosptial chaplain and a professor of nursing who specializes in policy. I asked what happens when a person prepares a clear advance directive about medical treatment at the end of life before they develop dementia, but then as the dementia develops they might change their mind. Both speakers answered that if doctors certified that the person was not able to make decisions for themselves then their earlier directive should be followed.
But I don't think it is so simple. When we are adults at the height of independence we think that we would never want to live dependent and not in control of ourselves. But perhaps the spiritual lesson we might learn towards the end of life is that we don't have to be in control of everything to have a worthwhile life, to have value. I do think it better to die of something else first than to die of Alzheimer's, as my grandmother did. But I also don't think a statement in advance that "I would never want to live like that" is necessarily worth more than what the person is actually experiencing even if their awareness of the world around them has become limited.
Saturday, April 18, 2009
John is away
Our daughter has a long weekend but I don't, so John flew up to spend the weekend with her and my mother. I miss the chance to be with our daughter, but it sounds like they are having a good time. One good thing that has come out of John's illness is that he now gets along with my mother. He says now that he is diagnosed with an illness she is no longer so judgemental about him. I think she is less judgemental towards me too, so I attribute it to her moving towards Alzheimer's--she doesn't remember things that in the past she would have criticized. Anyway, my mother and John now seem to have made an semi-conscious alliance from their mild cognitive impairment.
I had a lovely peaceful day today. Made pumpkin bread, cleared out my closet shelves (three trash bags of clothes to give away), went to a wedding shower, stopped by to get Aunt Florence her mail, and took a beautiful bike ride with a friend.
Labels: family, Lewy Body Dementia