March 1, 2018, by Paul Cavanagh, caregiverexchange.ca
In fact, the most difficult period for her was before Arno was diagnosed. It lasted for a number of years. “I think in his own mind, he knew something was badly wrong,” she says. “And he responded in different ways that were difficult for me.”
When Arno was finally diagnosed with dementia, it was “like a relief” to Madeleine, who is a retired public health nurse. Up to that point, she’d been hesitant to speak about the changes she’d seen in him. “You’re reluctant to think, ‘my husband’s going mad,’ but you know there’s something wrong.”
Once the diagnosis was made and there was no doubt about it, Madeleine felt free to speak openly, and she started reaching out for help. The first step was to look into a day program. Initially, she didn’t believe Arno would go. “By nature he’s not a joiner and not interested in social groups. So, I was really skeptical.” To start out with, the deal was he would go one day and see how he liked it. He’s been going there for nearly four years now.
Once Arno started going to the day program, his personality changed, and he became a happy person again.
“He genuinely likes it,” she says, “because every morning when he gets up, he likes me to tell him, ‘What’s on today?’ He still has that need to know. So, I’ll say, ‘Today you’re going to the camp.’ And he’s quite happy when he hears ‘the camp.’ He’s going. He knows what his day’s going to be like.”
Madeleine can’t speak highly enough of the people at the day program. “They’re professional, and they really care. And I really feel he’s still functioning at the level he is because he has that stimulation four times a week.”
Madeleine has also reached out to friends for support. She began by making a list of people she wanted to approach. What she noticed before she spoke with anyone was that most of the people on her list had experienced loss in their life in one way or another.
She admits that the initial reaching out was difficult. She began calling her friends and asking them if they’d be willing to do things like spend short periods with Arno so that she could get out on her own. Much to her delight, her friends were happy that she asked and were more than willing to help. She wonders whether their experiences with loss made them particularly receptive.
Madeleine hasn’t had to call on her friends much yet, but she now has seven or eight people who’ve agreed to help her out. If she decides she needs to get away for a full day – longer than she’d want to ask one of her friends to cover – she has someone professional and reliable lined up to come in and look after Arno. There’s also overnight respite available through the day program. She doesn’t feel a lot of need for respite at the moment, but she realizes that may change. “Six months from now, I may be gasping for a couple of nights of respite.”
Although Madeleine has drawn on various sources for support – her friends, the day program, the Alzheimer Society – she didn’t immediately take advantage of them. “In the beginning,” she says, “you hear about all this help, but you don’t see it and you’re not feeling it. Obviously, in my case, as things have evolved, I am feeling that there is help and we’re getting adequate support.”
Madeleine describes being a family caregiver – a term she only began identifying with last year – as a full-time job with bits of freedom in the middle. That said, she’s managed to stay very active. “I haven’t been painting much lately,” she says, “but I read, I’m working with a friend on a book, I watch Netflix, I go for walks, I go for lunch with friends, I go to my French class. I mean I do tons of things… I do not complain.”
She reads ancient Greek philosophy, which she finds very helpful in putting her role as a caregiver into perspective. She’s particularly drawn to the teachings of Epictetus, a Stoic.
“He’s very down to earth, you know,” she explains. “You’ll be happy if you think about what you can control and basically forget about what you can’t. And I found that very helpful. I recommend it to anyone who’s looking after someone with dementia. Because, as I said, I have no control over how he may be in six months, but today, I’m pretty sure I know what he’ll be like when I pick him up downstairs at 3:30. And I know what our routine is. And we’re happy doing that routine. So, for me, that’s a sensible, logical way to make this time as good as it can be for both of us. I like to be happy. So does he. So, I think to just do it day by day and keep the system sound all around you, and you just work your way through it.”