March 2000

Mar. 3/00
Today is my mother's birthday; she would be 85. I miss her. I went to another conference (yet again!) last week and found out a lot that I had felt about dementia was true. It was a wonderful day held for professionals and it was about celebrating the lives and spirits of those who suffer from dementia. I shall pass on to you what I learned as time unfolds. I have felt distressed of late because I was losing the desire to see my father. I felt I was of no use to him as he never acknowledges me and rarely looks at me. During the conference it occurred to me there was one thing I could do for my father that would also benefit me; I could read him the Bible. You may recall my dad has always loved to go to church and that something in church continues to touch his soul. It seemed to me that perhaps I could do something similar by reading to him. I have not read the Bible cover to cover (an award winning author stated that any well-read person should have read at the very least the Bible, The Odyssey, Aeneid, Ovid's Metamorphoses and Dante's Divine Comedy.) So reading the Bible would be good for me as well...

As I am going away tomorrow on a holiday, I went to see dad this afternoon. I cut his hair, cleaned and trimmed his ears and then sat down and explained that I thought he might like it if I read the Bible to him. I got no response so I just started. I began with the Book of John for some reason - a good choice as it turns out since we are close to Easter and in John we read about the betrayal of Christ. So I read for about half an hour and then helped dad with his supper. He ate quite well but began to tire. So I cleared everything away and sat down again and started to read. I would look up at him from time to time; he seemed to be listening although I have no idea how much was getting through. But I kept reading and am enthralled at the beauty of the language (I am reading from the original St. James's version of the Bible; even though I am a Protestant I was unhappy when the revised version of the Bible appeared...it has lost the beauty of the language.) I kept reading about the betrayal until I read dad to sleep. I kissed him gently and left. I will continue to read to him every time I see him, if only for a few minutes. It certainly makes me feel better because I hope I may be affirming his dignity and beliefs. And affirmation of dignity and celebration of the soul are what we must do for those who suffer from dementia.

Mar. 14/00
I timed my visit to dad's to see his doctor only to learn that last week dad was the best his physician had seen him in a long time - and I had to be away! Since he has a shower on Wednesday's dad was tired today. When I saw him after being away for 10 days I was once again shocked at how frail he is...a shell of a person. I kissed him and introduced myself but he only looked over my head, at what I don't know. Although Wahid was there, I gave dad his lunch; I quit after about half an hour as he was too sleepy. But during this time he looked at me in such a way that it seemed he was angry at me. I asked him if he was upset at me for going away. I then started to talk about the past 14 years together...our caregiving journey. After lunch we put him in bed and as I leaned over to kiss dad he started crying. I was not sure why but I suspect it was because I had asked him not to be upset at me for going away. I sat with him until he fell asleep, then walked home feeling bad to begin digging out from under the huge pile of accumulated work.

On the way back I started thinking about why dad cried; I think I was trying desperately to reach him, to get some sign that he knew me and when I spoke of anger and his distress it seemed that something got through to him. Perhaps my words, perhaps my tone of voice. I believe it proves what I am learning more about...that although a person with dementia cannot speak or comprehend everything, there is a part of his mind that can still feel, a part of the soul that will always need love and reassurance. I keep trying to put myself in my father's position so I can try and understand what it must be like for him to be so incapable of expression. But I continue to learn that he is still capable of expressing emotion, however seldom; I just wish I could see something other than tears and distress.

Today I gave a seminar on Caregiver Guilt at lunch; this evening I was asked to speak to a support group held at a nursing home about recent developments in dementia. I had nothing formal prepared but rather collected all my latest information (a considerable amount!) and decided just to do a stream-of-consciousness talk about issues as I came across them in my pile of research, paper and books. Members of the group asked the occasional question but basically I talked for two hours. After it was over the caregivers not only thanked me but said they could have listened to me for another two hours! I have found I really enjoy delivering information and support this way...it allows me to move freely from topic to topic as I discover what I want to say. I have also discovered something else; dementia has become my passion. I have signed up for more dementia conferences and was just asked to sit on the implementation committee for Ontario's Strategy for Alzheimer Disease and Related Dementias. Quite a honour for a person who knew nothing about dementia 3 years ago.

Mar. 23/00
My poor father. They painted his room yesterday (I did not know until today) and he had to sleep there amid the paint fumes. So today when I dropped by with Oreo his eyes looked red; he was also not able to have a sleep which did not help. I was rather upset about last night and asked Wahid to request another bed for tonight which he did.

When I saw dad I was once again made painfully aware how frail and uncomfortable he seems to be. Since he cannot tell me how he feels, I go by how he looks and acts. He just looked miserable, staring at nothing. I felt miserable just looking at him.

Mar. 26/00
A cool day but I was determined to take dad to church. I called early this morning and asked that dad be ready to go by 10. When I arrived he was dozing; I told him we were going to church and the word church seemed to mean something - still. Bundled him up and off we went. The service was nice; the choir was particularly lovely. I watched dad from time to time but he did not seem to be very engaged. Towards the end he decided to grab my back and start pulling me back and forth; and he was very difficult when I tried to put his jacket on, hanging onto his wheelchair with each hand, making things very difficult. I wondered if the thundering organ music might be too much for him now. But it really doesn't matter because I will continue to take him to church until he is physically unable to go. Somehow I know it is good for him.