My experience with dementia started when I was eight years old. I shared a bedroom with my grandmother, who moved from her home in Nova Scotia to live with us.
My grandmother developed dementia in her late 70s. She would pack up all the bedding and say she was going home to Nova Scotia. I was taught to just make the bed up again when she was not in the room, and remind her that she lived with us now. She was definitely the reason I went into nursing and specialized in care of the elderly.
I also placed my mother and aunt in long-term care and have had a 45-year nursing career caring for the elderly. But none of that prepared me for this journey.
My husband, Lloyd, is definitely not the person I once knew. Even physically, he is starting to have difficulty walking. Dementia has taken away everything that he loved. He was the smartest guy I have ever known.
He is not difficult; he is not resistant. But he needs total care. It's like dressing a child. Lloyd doesn't understand anything you ask him to do. Even when I ask him to lift up his foot so I can put on his sock, he doesn't know what that means. But he is not suspicious or paranoid. He's agreeable to going to programs.
I see glimpses of the old Lloyd when I have to put his coat on when we are going out.
I have to guide his arms into the sleeve and zip him up. But when I turn my back to get my coat out of the closet, he always comes over and helps me with my coat. Without fail. He can't figure out how to put on his own coat, but when he sees me reaching for mine, he will help me.
He is usually up at least once a night, sometimes five times. Then there will be a couple of nights where he will sleep 11 hours. It's like with a baby – every night is different, every day is different. I have been very fortunate because we both have access to programs. I go to a support group which I find helpful.
He really loves his group at the Alzheimer Society. His background was in economic development and he was used to meetings. He thinks he's at a meeting. He sits at a table with four people. He will tell me how productive the meeting was. That they got this grant approved and got funding. It makes total sense to him but of course it's totally out of context.
I usually have music on here. Golden oldies from our day. Last week an old song by the Platters came on and I got him up to dance. That was nice because I can't really get him engaged in anything much any more. I thought he would love the view from the condo but he is oblivious to his environment.
Last fall, I kept being told I should get him on the list for long-term care because it could take two months to two years for a bed to come up. That's a huge range! I filled out the form and barely two months later, I got a call saying they had a bed. I would have had to move him two days before Christmas, and I just said no. I was not ready. It had barely been two months and I was definitely not ready to do that two days before Christmas. So, they closed his file. I had to wait three months before the file could be opened again.
At the time when you need support, you are given an ultimatum. That's the way it felt: an ultimatum.
A friend placed her husband a year ago and it's not a lot easier once they are in long-term care. She still goes there twice a day, every day. I can see myself doing that. And I am going to worry about him at night. He is up a lot at night and can't find his way to the bathroom. He can't get back into bed or cover himself up. I am thinking, "What's going to happen to him at night?" But I know I will have to place him soon.
I've had some unexpected positive experiences since we started this. Lloyd was being monitored for a cardiac issue and we would see a different cardiologist every time we went. It was decided to implant a pacemaker. Then we saw a wonderful young guy, a fellow in cardiology, who said, "Wait a minute. I think we need to look at the whole picture here." We talked about it, and decided not to implant the pacemaker because Lloyd's biggest problem isn't with his heart. I was impressed that the fellow thought beyond his specialty.
A letter was delivered to my door by the superintendent from a gentleman that lives in the building who I hadn't met. He had seen us in the elevator. It was a lovely letter offering to stay with Lloyd if I wanted to go out and have coffee or go for a walk. He told me that he was very involved with his mother and she had Alzheimer's. That was just totally unexpected.
Our grandchildren range in age from 21 to 1. The older ones have great memories because Lloyd taught them many things. Canoeing is really big in our family. My son happened to see a movie trailer on a new film about canoeing and arranged for a private viewing at a theatre downtown for Lloyd's birthday. I wasn't sure how much Lloyd would get out of it, but it was more about the children and grandchildren celebrating and connecting with him through memories of something that they all loved.
It's horrible for everybody. There's no two ways about it. Lloyd is still in his early 70s.
Mary is a nurse with a long history of caring for elderly patients. Ten years ago her husband, Lloyd, was diagnosed with dementia at age 62.
This interview with Andreas Laupacis first appeared in Healthy Debate, an online publication guided by health-care professionals and patients that covers health policy and evidence-based medicine in Canada. It has been edited and condensed.