Living with Dementia
At first, I refused to accept I had dementia. I was furious! Why me? I’m too young—only 67! Those doctors didn’t know what they are talking about!
I had a million excuses for what was going on. I badly wanted to believe in a different explanation for my symptoms. I was angry, then confused, then scared…it was a very difficult period for me and my family. I became quite depressed. Life seemed so hopeless, so unfair!
It took a long time, and I still get angry sometimes, but gradually I’ve begun to accept that my life is going to be different from now on. So, now what? What happens next?
I know there’s no cure for dementia; it’s a progressive disease. But as much as I can, I need to manage the changes that are taking place. I’ve started reading about dementia to understand what I’m dealing with. My daughter brought me some material from the Alzheimer Society. At first, it seemed overwhelming and I couldn’t take it in—too much new information at once. So I read a little bit at a time. I soon started to learn about some of the positive things I can do to slow the progress of my dementia, to maintain my independence for as long as possible.
...As much as I can, I need to manage the changes that are taking place. I’ve started reading about dementia to understand what I’m dealing with.
My focus now is on staying as healthy as I can. With the new medication I’m on, I’m not as tired. I’m eating better. I’ve cut back on work and stress, and I am spending more time with my grandchildren. They tell me that I need to exercise my brain, so the kids are teaching me new card games. Sometimes they even let me win.
I have a new doctor, now, and I have more confidence in her. She takes the time to explain things clearly, and to answer my questions. We’re working together to figure out which medications and treatment options work best for me. I often arrive at my appointments with a list of questions about things I’ve read or that people have told me. And I’ve learned about the helpline at the Alzheimer Society, which has helped me with many of my concerns. I’m learning to take control of this disease, and to seek out the help I need.
So far I’ve been to one dementia support group meeting, and I’ll definitely go back. I was surprised at the mix of people in my group—truck drivers, university professors, moms, office workers and musicians. One woman talked about how she felt so alone with this disease—how friends seemed uncomfortable around her, like she was no longer the same person. “It’s like you’re losing your self, the person you used to be.” I found myself nodding in agreement with a lot that was said. At first I wasn’t sure about the idea of a support group, but I think I will find it helpful. Time well spent.
I worry about what will happen to my family, but at least I can do something about that. My daughter has begun to help my wife with the day–to–day household finances, something that used to be my job. I’ve started to put my financial and legal affairs in order—that way I can rest easy that it’s all looked after. Things like arranging for someone to take over my business, transferring family assets out of my name, signing a representation agreement giving family members the legal authority to make decisions for me when I’m no longer able. There’s a lot to think about, but with help from my accountant and lawyer, we’re taking it step by step.
I’ve been wondering how much longer I’ll be able to drive safely. I’ve heard of people needing to pull over because they couldn’t remember where they were going. How will I know when it’s time for me to stop driving? Hopefully that won’t be for some time yet.
One good side–effect of all this future planning is that we’ve started talking about other difficult topics, like what happens if my wife can no longer care for me at home, or even what kind of funeral arrangements I might want…. I find it very hard to think about these things, but it’s not going to get any better if we put it off. Dealing with it all now brings me some peace of mind.
At first I wasn’t sure about the idea of a support group, but I think I will find it helpful. Time well spent.
Some days are good; other days less so. There are certainly bumps in the road. I try not to get too frustrated when I start to say something and forget what I was saying. What really irritates me, though, is when I can’t find things. I’m trying to give myself more time to remember, so I don’t feel rushed. And I’m working on other strategies—like keeping my keys and wallet in a special place. I’ve stuck notes all over the house to remind me to lock the door when I leave, or take out the garbage on Tuesdays. I get lots of practical tips like this from my support group.
What is hardest for me is not knowing the future. How long do I have? How fast will I deteriorate? If I’m sounding depressed, Sonja gives me the dog’s leash and suggests that we take a walk. I always feel a bit better after getting outside in the fresh air.
My family and some of our friends provide tremendous support. Sonja was even saying the other day that this illness seems to have brought us closer together. I think she’s right. We’re facing this together, and helping each other cope. I know it hasn’t been easy for her—she’s had to work at being patient with me, trying to understand what I’m going through. She’s also had to let go of some of her plans and dreams for our retirement years. It’s certainly not easy for me, either, although I’m coping much better now than I did a few months ago.
Overall, I know I’m doing all that I can at this time to help both of us manage this change. Just the same, I sure wish things were different.
Continue the Journey: Care At Home