Who is caring for the caregivers?

Family members, usually women, are the main caregivers of a burgeoning population of elderly Canadians. They need respite, resources and government support for this full-time responsibility that challenges their own personal health.

On the promise of anonymity, my friend Virginia Lee* has spent 45 minutes on the phone with me, spilling her guts about her frustrations trying to help her 82-year-old father manage through several recent illnesses and the beginnings of memory loss. Often, she feels inadequate to the job but she does appreciate knowing she’s not alone. “All my girlfriends are complaining that their parents are driving them crazy,” she says. Indeed, raise the topic of caring for parents at any gathering of 50- and 60-year-olds, and stories burst out of people in an angry torrent.

The stories are usually about a lumbering health-care system that, in spite of endless rounds of doctors’ appointments and hospital visits, is struggling to meet the needs of the frail elderly with multiple health problems, about family members who can’t agree about the best way to help, about parents themselves who refuse the help that’s offered. And always the underlying theme is that just as soon as one problem is solved, another crisis looms. Lee, who, at 53, is an office manager and mother of two teenagers, describes it this way: “What it does to me is that I can’t seem to focus. I’m always worried. It takes me off my game. I think, ‘Things are okay now, but what about next week?’”

Caring for elderly parents in their last years is an inevitable part of the cycle of life, and today’s boomers are taking their turn. But what’s different today is that people are living much longer, often with many overlapping problems. “People are caring for the frail elderly who in the past would have died,” says Robert Glossop, senior research associate at the Vanier Institute of the Family in Ottawa. And the generation who is caring for them are mostly women in the workforce with a range of other responsibilities, sometimes including active parenting.

The population of seniors over 80 has increased dramatically in recent years. Statistics Canada figures show a 40 per cent increase from 1991 to 2001, and much more growth expected. During the same time period, we’ve seen a major shift away from institutional care for the elderly to care in the community. And the main source of that care is family members, increasingly supplemented by formal care in the community as a senior ages.

Lee’s father doesn’t yet receive any ongoing formal care. A retired engineer, he still lives in his Toronto condo and makes regular trips to Mexico. But a major heart attack and other related ailments have forced him into hospital for several long stays in the last three years. Lee and her three siblings take turns accompanying him to medical appointments, keeping track of what is (or most often isn’t) in his fridge, checking to make sure he gets to where he says he’s going. It’s “management by crisis,” she says. Sometimes, the crisis is a full-blown medical emergency with the siblings spending many hours monitoring their father’s care in hospital; sometimes, a crisis is the result of poor communication and confused expectations.