Nov. 28, 2002
Linda Dobson quit her job as a nurse in the 1980s to take care of her husband Jim, who has muscular dystrophy. They live frugally in Pleasant River, a rural area about two hours west of Halifax, on his disability cheque.
"I am still doing nursing - happily, but unpaid," said Dobson, who is in her 50s. "I'm very good at managing finances. You simply don't do things; You don't buy things and you don't go places. But there are times when things are tricky."
The Dobsons are among many Canadian families who could benefit from Roy Romanow's report, which called on Ottawa to amend the Canada Health Act to include home care.
The report, released Thursday, called for a $2-billion injection over the next two years to provide the foundation for a national system - beginning with support for mental health case management and intervention services, post-acute home care and end-of-life care.
Romanow also suggested financial aid for unpaid caregivers and a new program where they could be granted time off from paying jobs and receive benefits.
The Dobsons are on a very limited budget. They couldn't afford a ventilator, which Jim needs to help with his breathing at night. They get government help to rent one.
But that's where the help ends.
While she's been told she is eligible for a home care worker to relieve her, Dobson doesn't feel that is necessary yet. She is able to leave Jim on his own and go out for short periods to tackle shopping and buy medicine.
"I'm trucking along - my neighbours are quite helpful and I think I'll be able to get by," said Dobson.'
With each passing year, the number of people needing home care increases. And while government spending on home care has grown faster than other health care spending - between 1975 an 1992 it grew almost twice as fast as total health spending - it hasn't kept pace with Canadian needs.
"We've got a larger number of people coming at all our systems - chronic care, acute care, long-term care or community services - whose needs are (becoming) more and more complex," said David Wright, head of VHA Home Healthcare, a charitable, not-for-profit home care provider in Ontario.
"It is a kind of exponential expansion in terms of things that drive costs."
With the health care dollar stretched thinly across Canada, pulling it further to cover all home care needs might cause it to snap and sting somewhere else. So people are doing with less or without.
Not so long ago, there was more help for people who weren't necessarily bedridden but needed a hand to continue living outside of a health care facility, Wright said.
"We were able to provide light housekeeping and meal preparation a couple of times a week," he said.
"Now these people are out of the system. We don't know where they are - in Ontario at least."
It's not just Ontario. All provinces have had to choose what sections of health care are funded. The sickest people in society need to have full access to medicare, but what about those who just need some help?
"The only people who are getting care now are people who need medical or personal help," said Wright. "You can't get the service if all you need is light housekeeping and meal prep.
"They get a bit of help with dressing, getting on and off the toilet and a bath once a week . . . The numbers of hours being provided have just plummeted."
Thanks to her training as a nurse, Dobson doesn't need help caring for her husband. But she does wish there was someone to help with household chores.
The tidy hedge that once graced the area beside her home is now a "mini jungle" because she doesn't have the time or energy to trim it. And on her tight budget, where bills, food and medicine leave room for little else, she simply can't afford to hire someone to do yardwork.
Dobson is living proof that some Canadians see caring for their loved ones as a privileged duty, but this age-old tradition is not always practical today.
When Canadian families were larger, many people - when they could no longer live on their own because of old age or ill health - would move in with a son, daughter or other relative.
But with smaller families and an economy that means most adults have to work full-time, there isn't always the ability to provide care for a loved one.
The Romanow report recognizes the essential role informal caregivers play in the delivery of home care services. It quotes a 1999 study that found caregivers have much higher mortality rates.
While assuming the care for someone has always meant huge personal sacrifice in terms of time and heartache, now it also entails financial hardship for people who must quit their jobs to do it.
"They are saving the government millions of dollars," said Dobson, who along with her husband runs the Society for Muscular Dystrophy International out of their living room.
"These people give up their jobs to take care of their mothers, fathers, grandparents or spouses. They should be given something.
"Instead of paying for a respite care, why not pay me to take care of
my husband? I want to take care of him."
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