For Alice Black, one of the hardest things is the embarrassment that she feels when her husband Jim accosts strangers or acquaintances with “one of his lines.”
“He’s disinhibited. It’s something to do with frontal lobe involvement,” explains Alice who, like her husband, is 83 years old. “But he’s not aggressive. He has a nice disposition.”
Two of Jim’s standard lines are: “Why are you picking on me?” and “What have you bought for me?”
Alice is one of a large cohort of seniors who are taking on the burden of care for their spouses. The fact that she does this in a small town means there are some disadvantages—such as sometimes having to travel to see specialists—but also some surprising advantages, as other services are close at hand.
Ten years ago, when the couple still lived in their lakeside home, Jim became very anxious and restless, and his family doctor prescribed medication to calm him.
Four years ago, Alice insisted that their family doctor refer him to a specialist. Jim was formally diagnosed with Alzheimer’s by a visiting psychiatrist at the primary care memory clinic in Brockville, about 50 km away.
The couple moved from their lakeside home in the country to an apartment in nearby Smiths Falls, Ont. three years ago. “Thank heavens we did it when we had the strength to do it,” she says.
It was good timing because Jim, who worked as a civil engineer in Ottawa before he retired, readily reoriented and loves to walk around the small town.
Until it closed five years ago, one of the major employers in Smiths Falls was Rideau Regional Centre, which was once home to more than 2,000 developmentally challenged children and adults. Many former residents remain in the area, and live in small group homes.
Alice thinks that the town’s familiarity with this special needs community explains the ease with which most people respond to Jim’s questions, which he delivers in a friendly way. “They just chat with him. It’s only young store clerks who sometimes take offence.”
Meanwhile, she’s figured out that if Jim pushes the shopping cart in grocery stores, he is less inclined to meander and engage other customers.
In September 2013, Jim went for a walk and didn’t come back. Alice went out to look for him at his usual haunts but couldn’t find him. When she got home there was a message from the Perth and Smiths Falls District hospital. (The Smiths Falls site is a block away from their apartment.)
Jim had wandered off his usual route to a local Tim Hortons coffee shop and ended up many blocks away near a Canadian Tire store. He had tripped and fallen, had several cracked ribs and needed 10 stitches in his forehead.
Now, Alice accompanies Jim everywhere. This can be exhausting because “he can’t sit and do nothing” and he loves to go for walks, often several times a day.
The accident that landed Jim in hospital happened just one week after Alice had finished up a course of radiation—friends and relatives drove her the 80 km to Ottawa five days a week—for treatment for breast cancer. And shortly after that, she helped host a family reunion.
Jim had a checkup with an Ottawa psychiatrist who travels to Smiths Falls, and when the doctor saw Alice looking so exhausted, she decided Alice must be in denial about the strain of keeping Jim at home. Jim was already enrolled two days a week in a day program that is, conveniently, located in the same complex as their apartment. Alice decided to put her husband on the list for a nursing home in town but, now that she is feeling better and thinks he has stabilized, has removed his name.
Jim knows her, and is still affectionate, but while they used to be “great companions,” she can no longer have a serious conversation with him. “And when I ask him what he wants to do, he says, ‘Whatever you want.’ At restaurants he will choose the same meal as me.”
She’s taken over the task of paying rent and other bills, and she’s grateful to be able to read while he plays computer games. He still loves to play cards. They play rummy after every meal, and they go walk out together two times a week to play bridge with others at the local seniors’ centre. “People seem to accept him,” she says.
Alice gets out once a week to play bridge while a homecare worker stays with Jim. “It’s really just nice to get away for one afternoon and there are no remarks, because when we play bridge together he is always making these silly remarks because of his dementia.”
She continues to ask him to do household tasks such as taking out the garbage “because he needs to be part of it.” Still, there are risks. When she asked him to hang up a shower curtain,“he threw it over the rod and cut a hole in it.”
Alice says she is lucky. When the time comes for him to go to a nursing home, they can afford a private room. Otherwise, he’d be in a room with three other people.
“We forge ahead.”
Ann Silversides is an award-winning health journalist based in Perth, Ontario.