Seniors just want to stay home

Sunday, April 29, 2012

Emily Burke writes on what seniors really want:

"We elderly do not want everything to be done by doctors, nurses and care homes, so long as, with a little help from our immediate neighbours, we could do so much of it all for ourselves," says 82 year old William Lawrence from Victoria, BC, one of thousands of Cross Country Checkup listeners who phoned and emailed to talk about the current crisis in senior care.

Their stories helped illustrate the findings of a new report by the Health Council of Canada, which recommends improving support services for seniors, especially for the increasing number who want to live in their own homes for as long as possible rather than be moved into a nursing facility.

"The number one issue for them [seniors] is that they want to be able to live out the later years of their life in their home or the community where they lived as adults - it's that notion of aging in place," says Anne Martin Matthews, professor of sociology at the University of British Columbia and former scientific director of the Institute of Aging.

But seniors with the most debilitating health problems, who in many cases suffer from both physical disabilities and cognitive impairments, are receiving only slightly more hours of care at home than those with fairly moderate needs, the report finds. Though homecare is provided by local health authorities and therefore varies between provinces, the report surveyed Manitoba, Ontario, British Columbia, Nova Scotia, and Yukon and found that across those provinces and therefore much of the country, homecare is not adequate.

Getting a person set up with the appropriate homecare to suit their needs is a lot more complicated than simply filling out a form at the doctor's office.  Between hospitals, different government institutions, and the homecare agencies -- which are private businesses -- there are a number of players involved and each has different staff and protocols.

"You have to fight for it," says Anton Gudinskas, whose elderly mother needs a lot of care after a cancer-related surgery left her with a severe infection. He and his brother have had to learn what sort of help is available, and equally important, they've learned how to ask for it. It's a matter of using the right vocabulary.  Simply asking for someone to help their mother around the house was not as effective as when they starting saying, "my mom is in danger of falling" and, "my mom can't scale the tub." This emphasis on language creates a disadvantage for people who speak English as a second language.

"If we know something's available, we can get a 'no' four times. We keep asking the same questions, the same people, the same departments. We keep escalating the questions until somebody gives us a reason why," he says. They make the most of the system and are not deterred when things get confusing. "I have been called aggressive," he says. And maybe that's what it takes.

And for seniors who don't have supportive and savvy family members to help them manoeuvre the system and champion their cause, there's a risk of them being left behind if even sharp-minded, healthy people find homecare complicated.

"Approximately 40-50% of seniors with the most complex health needs have distressed caregivers, who report they are finding it difficult to continue to provide care, and that they have feelings of stress, anger, and depression," finds the Health Council report. For family members and partners who are acting as caregivers at home, there's a risk of burning out and putting a strain on their own health.

For 10 years, Fran Wittgens cared for her husband who suffered from Parkinson's until he passed away a year ago. "It could be very exhausting physically and emotionally."

"There are some really great services," Wittgens is quick to add, including an adult daycare program near her home in Antigonish, Nova Scotia that her husband attended twice a week. With daycare, combined with visits from homecare workers, she found she got a lot of help, but it would have been an invaluable relief to have an occasional respite at night so she could get proper rest, she says. This nighttime help was not available through homecare and she usually found it too costly to arrange privately.

Better transportation services to and from medical centres and other appointments would also have alleviated the exhaustion of struggling to get her increasingly immobile husband in and out of the car, says Wittgens.

In fact, transportation in rural areas complicates homecare in other ways as well. Simply getting homecare workers out to houses in remote locations often means those workers have to drive 30 minutes each way just to get to a session that may take as little as 20 minutes.

The homecare system has inefficiencies to overcome, but in the meantime it's clear that seniors, with the help of their families, are willing to go to great lengths to continue living at home. 

Emily Burke (MA '09, UWO) loves being a production assistant for CBC's Cross Country Checkup because she gets to speak directly to interesting people from all over the country. She lives in Toronto and writes on a wide range of topics from municipal politics to food sustainability to all things arts and culture. She hates to go a day without listening to CBC radio.