There's no place like home

By Leslie Campbell, February 2011

The rising tide of dementia demands more solutions.

David and I did the Colwood crawl this past month as David’s mom Patricia was in the Victoria General Hospital for three weeks. She had landed there after a sudden decline in her mobility and vitality. Many tests and good care later, it’s still not precisely clear what’s wrong—besides the lymphoma and dementia which we already knew about—but a new problem with her kidney means she will have to wear a catheter from now on. 

Pat is taking the indignities that come with aging and disease with grace and good humour. While much of her memory is gone, she still recognizes us and can still recite Shakespeare on cue: All the world’s a stage/And all the men and women merely players/They have their exits and their entrances…Indeed. Dementia’s course is known, and it’s largely a grim journey.

The hospital experience was, on balance, a good one—for Pat and her family, which rallied around her, showing up daily to feed and reassure her. My front-row seat at the hospital reassured me that some things are working pretty well (except the traffic).

My mother-in-law’s hospital care was diligent and compassionate. Pat got lots of attention from doctors, nurses, physiotherapists, occupational therapists, and social workers. And the food really does seem to have improved.

But hospital is still a place in which you wouldn’t want to spend any more time than necessary. A friend of mine, a well-credentialled nurse who teaches nursing and has run hospitals on the Island, in the Yukon and overseas, once said to me, “A hospital is no place for a sick person.” It sounded funny at the time, and of course needs a few qualifications, but I see her point. As the in-your-face hand sanitizers and headlines testify, there’s lots of germs floating around. And by its very institutional nature, the hospital is somewhat impersonal and grim, with constantly changing staff. For those with dementia, it’s a very confusing, unsettling place.

On top of that, hospital care is the most expensive form of care. Best to keep it for only those times when a person has no other choice.

In Pat’s case, now that she’s been put back on track, she has a doting husband who is keen to take care of her at home.

Bob is 87, but he’s willing, able and determined. For the past four years, since her diagnosis with lymphoma and subsequently with dementia, he’s devoted himself to the myriad tasks involved in caregiving. Enhancing Pat’s quality of life has become his main purpose in life.

Fortunately, he is not short of brain power (his memory is sharper than mine), funds, and family support. He can afford the bath chair and the stair lift. In the aftermath of the recent crisis that landed her in the hospital, it looks like he’ll need to hire a nurse or home support worker to come in daily, though he can manage some aspects of the catheter on his own. His family is hoping he’ll accept the help of a nursing service to reduce the wear and tear on him. He is, as he often says to our suggestions, “taking that under advisement.”

While I don’t worry about Bob (much), because he is so capable in so many ways, I do wonder how other elders—both those with dementia and their caregivers—manage. It’s such a debilitating, horrible disease. And it affects a lot of us; 20 per cent of seniors have dementia by the age of 80. Because not every caregiver is as able as Bob, they can often end up for months in those expensive, rather uncheery hospital settings—or spend years in nursing homes. If we could reorganize our health care system so that more supports were given to people to enable them to stay in their homes longer, they’d be happier, there’d be less pressure on hospital and nursing home beds, and less costs all-round.

A Globe and Mail series on dementia last September advocated that the federal government develop a national strategy on dementia, such as those in place for cancer, heart disease and mental health. The Alzheimer Society has lobbied for this for 32 years, warning costs already top $15-billion a year, including caregivers’ unpaid labour. By 2038, the Society predicts the costs will be 10 times that. (See their recent report, Rising Tide: The Impact of Dementia on Canadian Society.) It seems virtually anything we can do to delay the entrance of people into long-term care facilities is a cost-saver.

The Globe series cited  “Keep[ing] people at home as long as possible” as the number-one solution to the dementia crisis. Experts say it’s both the most humane and cost-effective route. Another key solution stated: “Guarantee family caregivers the help they need.”

 That help would include access to equipment and devices that make life at home safer, training, and nursing services. The Alzheimer Society recommends caregiver skill-building and support programs like “system navigation support.” They show how such modest measures will reduce the “total economic burden” by many billions over the coming years.

As the Globe notes, “Most families are willing to help, but they need help themselves, especially as the disease progresses and new challenges arise.” 

I’ve seen Bob rise to the challenges time and again. He’s become Pat’s memory; he’s coped with her incontinence, he bathes her, feeds her, gets her dressed and to appointments, makes sure she gets her medications, rounds up wheelchairs and walkers as needed, cheers her up. Loves her.

Not all victims of dementia are so lucky; not all caregivers can cope in the face of the numerous and stressful demands. Even my amazing father-in-law may need more assistance as time goes on.

Meanwhile Bob is not just helping Pat live out her years comfortably. He’s helping all of us taxpayers by caring for her at home.

Leslie Campbell is the editor of Focus. Like many baby boomers, she didn’t know that diabetes, obesity, heart disease and chronic depression significantly increase their odds for developing dementia. Exercise is a key preventative strategy.