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Malcolm: Natural Caregiver [BACK]

This brief talk was given to the assembly of Pilgrim Project volunteers at the Pilgrim Offices, in Dorval on January 29, 2000 Saturday.

Ines Marchand, Director of Volunteers, asked Malcolm, who is 82, to speak about caring for his wife, Doris, who is 86 and has Alzheimer’s Disease.

A caregiver talks about his task:

These are my thoughts on surviving. My wife has dementia. She is partially blind. And I am the twenty-four hour caregiver. I have some help in the mornings (4 days a week), a Social Worker who visits, and two daughters, both of whom work.

Doris’ condition developed about 3 years ago. I managed well until this year, when I ran into some trouble. I started off looking for help by inquiring at the CLSC. As a result Doris ended up in the hospital for treatment of a uterine infection. We were expected to provide diapers at our own cost and to come to the hospital to feed her.) The situation was so bad that we figured we would be better off taking care of her at home ourselves.

My brother-in-law had been residing at a Home. We often had visited him and so saw plenty examples of caregiving. I am the caregiver and Doris looks to me for everything now. I get plenty tired of hearing my name. "Malcolm this" and "Malcolm that". Sometimes I just tell her that I am ‘Luigi’. When she asked where Malcolm went, I tell her he went out and I well be taking care of her until Malcolm gets back. It is just to stop hearing my name over and over again.

I start every day by getting her up at seven o’clock in the morning. The task requires a lot of patience. Sometimes I go up the stairs to her eight times or more to tell her to get up. You have to be patient. You have to have patience with the changes in a person. Eventually I get her downstairs for her breakfast. I always ask her what she wants. She never answers me. So I fix her what I think she wants. She just stares at it. I have learned that I have to wait. So I always bring myself a book or a crossword puzzle. She just sits and stares at the food, but when she finally decides to, she eats it. It takes a lot of waiting, a lot of patience.

Lunch and supper are better. As a young girl she did not eat breakfast. And now she has returned to the way she behaved as a young girl. But, of course, eventually she gets hungry and eats her breakfast.

It is sort of like taking care of a child – but, with a child it gradually gets better. With someone who has Alzheimer’s it gradually gets worse. The way to get through it is to play it by ear, to be flexible.

I have said the wrong things sometimes. Doris has her lucid moments. In fact, there is a kind of period to it. About every hour or so, she seems to know what she is doing. Those are times that she calls my attention to the things I have done wrong. But still, I have to wait.

She can be very abusive. To those abusive remarks I have learned that the best response is to keep silent. She forgets. Soon she is calling me for help as usual.

She wakes up at night wanting to go home. She means the home of her childhood. She has lived in this home with me for 52 years. But she still wants to go home.

I read "Chicken Soup" books to her. She likes the short stories. She see people in the house, a whole group of them. She does not know who they are, but she feels she has to attend to them. So she asks me to read loud enough so that they can hear also. I have to agree that there are other people sitting around the room.

Her blindness limits her physical activity. She is afraid of the stairs. It works out for me. I know that she will not go near the basement stairs or even go upstairs unless I am there to help her. I let her wander, as she wants. It is a little difficult to interfere with her. She will take a swing at me, if I try to stop her from moving around.

I have put old photographs of her and of us around the house for her to find and look at. She lives in the time of those pictures. There are pictures of her and or us at our wedding. That was 52 two years ago.

I still tell her "I love you." And "I’m your man." She is very jealous of any other woman who happens to enter the house. She is jealous of the Social worker, of the woman who comes to help clean, of our daughters. But she saves her jealously for after they leave. When they are there, she is all affection and good words.

I try to take care of myself. I have to look after myself first. That is the first rule. I have to look after myself so that I can look after her.

She needs me. I am happy in my job.

So, here are my ideas on how to proceed with the task of caregiving. I take it hour by hour.

I have nothing else to say.

For many of our experienced caregivers, this was an excellent statement of the situation with an Alzheimer patient. And they all regard Malcolm as a model caregiver.

The Pilgrim Project has developed a drop-in respite support program for natural caregivers. The Project arranges meeting times for them. The schedule is made up to fit their needs and desires. But essentially in it a drop-in program. Once a natural caregiver identifies himself or herself with the Program, we let them know by phone that the drop-in group will be running. They come or do not come as their own situations allow. When they do come the groups are small, and the conversation is intense. They needs desperately to talk, to share what they are going through. It helps enormously for them to have people to talk to who really understand their situations because they are going through something similar themselves.