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, 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.

Sunday, April 26, 2009


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.

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.

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.

Thursday, April 16, 2009

windows washed

We got our windows washed today (the joy of living in a rural area was that it cost $12 per window). John was upset when he got home that they didn't look better, but I remember that even years ago there was stuff between the two layers of glass. He called me to tell me we needed to do something about the window washing people not doing a good job. I said I would deal with it and by the time I got home he didn't bring up the issue again. I'm noticing having to calm him down about things occasionally.

I opened all the curtains and shades for the window washers and it was so nice to have the extra light in the house. There is a small window on John's side of the bed and he keeps the shade drawn all the time. I had forgotten how much I like the shade open.

Wednesday, April 15, 2009


I have such a feeling of satisfaction when I get rid of bags of stuff and when I see spaces neat and organized (even if I am less good at keeping them that way). I don't think John has that feeling of satisfaction at all. Some of that may be new, but I don't think he ever much had it. What is particularly hard for him now, he says, is making decisions. I'm trying to take the approach of only keeping things I love. That works well for furniture and china and kitchen equipment, but I haven't figured out how to apply it to files.

Monday, April 13, 2009


Mine as well as his. I called John from work this morning and found that he was completely mixed up on who was going to come help him with house stuff when. But then he did get the taxes picked up and signed and I think he has done an application to a summer program for our son. I can't predict what he will get done and what will disappear into confusion. I'm trying to get him to get the boxes of National Geographics out of the house before he goes away Friday.

Friday, April 10, 2009


The declutterer was here for 4 1/2 hours today and while she did a lot of laundry, she and John did start to tackle his things in the bedroom. Lots of long-lost things turned up. She's coming again tomorrow, then not again until Tuesday. He goes away Thursday and I'm hoping to have the house somewhat ready to show by then. John says I may be overloading him. But there may soon be water visible in the lake behind our house--the water level is coming up after a long drought. We need to get the house fully on the market. The undergraduate and I finished the garage.

Thursday, April 9, 2009


Yesterday I had some free time and the help of the undergraduate who works for us and got the garage almost completely cleaned out. John and the decluttering person did I think get more done today than last week when I was away. The main visible result is a lot of bags of trash piled in my office. I made the mistake of complaining about lack of visible progress and John got defensive about how hard he had worked. It is hard for him, and hard for me to recognize how hard it is for him to do things that go quickly for me. I can take on some joint areas like the garage but in other parts of the house the chaos is his and I need him to go through his stuff.

I went over Aunt Florence's list of medicines last night and saw several to be concerned about, including a hormone blocker to reduce the risk of breast cancer recurrence that can cause bone thinning. I don't think that is the right choice at 98 years old.

Three hours this afternoon with another contractor. We are hoping to have the bids by the end of next week.

Monday, April 6, 2009

no way to know

I went with John and his aunt to her appointment with an orthopedist. Two weeks ago John took her without me and afterwards told me the orthopedist said she didn't have a new fracture, just arthritis from trying to do too much while healing from the old fracture. Today I asked about the arthritis and the doctor looked at me like I wasn't making sense and said she is healing from a fracture of her tailbone as well as the earlier fracture of her pelvis. So did John misunderstand two weeks ago or was the doctor covering up something he missed then? No way to know.

book: Hearts of Wisdom

I finally finished Hearts of Wisdom: American Women Caring for Kin, 1850-1940, by Emily K. Abel. I found it helped me step back from my own experience, see it in a much larger context. She ends the book with some lessons for the future, including this:

Women who view caregiving as a way to achieve greater intimacy with care recipients, to demonstrate competence, and even to attain "hearts of wisdom" want to be relieved of intolerable burdens, not to upload all their responsibilities on the state.

I got home Saturday night from a conference in Rochester NY, though it was a near thing because of a seriously delayed flight. I did get one call from John while I was away about a door inside the house that he thought had somehow become locked--it turned out it was just stuck. I had caught up on sleep some while away but I still felt very tired yesterday, setting back in after my trip. John went with friends to an art exhibit in Atlanta and had a good time.

Wednesday, April 1, 2009

renovation planning

I spent four and a half hours with the designer and two contractors at the house we will be renovating. The good news is that having the designer supervise the whole process seems to make sense to everyone (and his charge for that service is extremely reasonable). It was a productive meeting--everyone listened to everyone and they came up with some new ideas, particularly for how to improve a problematic stairway. But I'm tired; it is hard to deal with on top of my job and worrying about getting our current house ready to show. And it is going to cost more than I had hoped.

I'm going out of town tomorrow for three days. The person who is helping John declutter and organize his stuff will come twice while I am away. I hope it goes well and they get far.