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In Dementia Caregiving, Countless Unrecognized Acts of Love

We spoke with three caregivers about their daily routines. Part of a series.

Crawford Kilian 16 May

Tyee contributing editor Crawford Kilian blogs about The Politics of Dementia.

For every person with dementia, many others are involved. Most are family members, and caring for a loved one is a hard test of a lifelong relationship.

In recent weeks, The Tyee has spoken to three such caregivers. Given the stigma that some still attach to dementia, we’ve agreed to anonymity. So we’ll call them the husband, the wife and the daughter.

The husband’s story

When they were in their mid-80s, the husband’s wife began to find herself losing concentration. Both are well-educated professionals, in comfortable retirement, so they sought professional advice.

The advice was brutally blunt: “You’ll have Alzheimer’s in five years.” Now, approaching 90 with other age-related health issues, the husband and his wife — lovers and partners for over 65 years — are struggling day by day.

A son of his generation, the husband had done little or no housework. He has had to learn how to cook. He’s also had to read the manuals for the vacuum cleaner and other appliances, and to take over the finances his wife had looked after for decades.

They exercise as much as possible, often walking a considerable distance to the nearest supermarket and bringing home a few groceries in backpacks. For more serious shopping, he goes alone.

At home, the wife enjoys watching TV but can’t name any favourite programs; she just likes “shows about people solving their problems.” She knows she has trouble finding the words for a particular situation. She used to read a great deal, but not anymore. When she reads a book, usually a mystery, she must read the whole thing or she’ll forget it and have to start from the beginning again.

The husband must cope with his wife’s sharp mood swings and underlying depression. She has episodes of paranoia and delusion, and is currently on anti-psychotic medication. “She realizes what she has lost and is continuing to lose,” he said, “and this has resulted in a severe reactive depression, which may, with her paranoia and loss of intellectual capacity, be considered her major symptoms and problems.”

In effect, as much as the wife has lost, she has not lost enough. She can’t remember where things are stored in her own kitchen, but she notices that some of her neighbours, who have known her for years, treat her as if she doesn’t exist.

“(But) most of the neighbours are thoughtful and kindly,” the husband said, “many having dealt with dementia in their own families.”

The daughter’s story

The daughter told The Tyee that about four years ago her mother began forgetting things, and didn’t know what her prescriptions were for. She’s lived alone in her own apartment for many years. But the daughter has gradually taken over more and more responsibilities, dropping in every other day.

It started with the laundry. “I brought some things to wash, so I’ll wash yours too.” Now she also looks after paying the bills (aided with a power of attorney her mother gave her years ago) and takes her to all her appointments. Her mother still goes to the bank and supermarket, with too many written reminders of her personal identification number, and takes out some cash. But her daughter makes sure the chequing account doesn’t get too full, and moves excess money over to a savings account her mother can’t draw from.

Her mother does some shopping for herself, but cooks fewer and fewer meals; she can make a cup of tea, and the daughter brings over meals to be microwaved. “She comes for supper at my house about once a week.” Her brother takes their mother out for lunch a couple of times a month; he’d do more but lives farther away and works full time.

The mother is still in good health, but has blood pressure and cholesterol issues requiring careful medication. Keeping track of pills is hard, so now a nurse comes in twice a day to administer them. The mother doesn’t know which button unlocks her building’s front door, so she has to come out of her apartment to let the nurse in. The daughter drops in often to check on supplies and keep things tidy.

While she likes to watch game shows and news on TV, the mother has forgotten how to check voice mail (it’s just an annoying beep-beep-beep on the phone before she gets a dial tone). She doesn’t read books any more, but she can read the same magazine over and over as if it were new.

Her sense of humour is intact, and she doesn’t go through the mood swings experienced by many people with dementia, but the daughter says her mother is in complete denial about her condition. When she finds she’s forgotten something, she says, “I’m losing it,” and then forgets the incident.

The daughter’s not sure how long her mother can stay in the apartment and knows that moving will be stressful; in a familiar environment, people with dementia can function well on habit, but they often decline sharply in new surroundings. For now, she’s caring for her mother one day at a time.

The wife’s story

Her husband was still “with it” seven years ago, when they celebrated their 50th wedding anniversary. He was still working, and uninterested in retiring.

Then he found he couldn’t understand business documents and was confused about other work issues. Reading a newspaper story, he asked her where Richmond was.

Their GP referred them to a specialist, who gave the husband a standard test: draw a clock, what’s your street name, and so on. Out of 30 questions, he scored 13; tested later, he scored 10. Neither he nor she really understood what “Alzheimer’s” meant. But he went on working — which meant sitting at his desk accomplishing little or nothing.

Two stays in hospital, for pneumonia and other health issues, saw his memory and confusion worsen. He was devastated at losing his driver’s licence. A heart condition requires drugs that keep him from taking medication for Alzheimer’s.

The wife doesn’t sleep well, and usually gets up early to read the paper. If he gets up early as well, she has to take him back to bed because he can’t find his way alone. By 9 a.m. she serves him breakfast and dresses him. “He has a thing for jackets,” she said. “Sometimes he will put on three, one on top of another. Also shoes: seems to like lacing them up, does that very well still.”

She can’t leave him alone; he’s with caregivers three days a week, which lets her run errands, but she stays with him the rest of the time.

And he stays with her, following her around the house. Always an athlete and outdoorsman, now he watches golf on TV, for a maximum of 20 minutes. The only golfer he recognizes is Tiger Woods. He may read the same magazine over and over. Sometimes, when she wakes at night and realizes he’s gone, she finds him in the family room, in darkness, with a magazine in his lap.

He has trouble finding words; asked a question, he expects his wife to answer. He doesn’t experience serious mood swings; he’s usually pleasant, but sometimes realizes something is wrong and it gets him down.

His appetite is good, and he’s a “clean eater,” his wife says. He can shave himself, but she must put toothpaste on his toothbrush and coach him on what to do when he showers.

“My health is OK,” she tells The Tyee, but she doesn’t have time to go to fitness classes. She has no companionship. She doesn’t want to invite people over, when her husband can’t take part in conversations. “It’s a lonely life. We can’t discuss anything,” she says.

Carrying on with caregiving

These are just three of the unpaid dementia caregivers in Canada. According to the Canadian Institute for Health Information, their out-of-pocket costs in 2016 were estimated to be $1.4 billion, a figure likely to rise to $2.4 billion by 2031.

They provide a mean of 26 hours a week of care — meaning half provide fewer hours, and half provide more. Almost half of dementia caregivers are likely to experience distress, compared to 26 percent for caregivers of other seniors.

It’s a great deal to ask of people, most of whom are themselves in their 70s or 80s and dealing with their own health problems and the stress of dealing with a loved one who is fading away. Eventually most will have to find some kind of care home, though they know that the loved one’s condition will likely deteriorate rapidly when he or she leaves a familiar place and routine.

So they carry on, while they can, performing countless unrecognized acts of love.  [Tyee]

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