Editor’s note: This is the second in our checkup on long-term care series.
Family life used to be “really good” for Ruby Allen and her husband, Terry, of Halifax.
Parkinson’s has changed that considerably.
Terry, 72, was diagnosed 14 years ago. Four or five years ago, his now late-stage disease had progressed to the point his wife stopped thinking of herself as retired and started to consider herself a caregiver.
“His condition really changed our lifestyle; we can’t go out like we used to, to see family and friends, all that stuff,” she said.
“I do get him out in the morning for a coffee, then when we come home, that’s basically it for him for the day. He mostly watches TV and he sleeps. I have to puree his food for him now; he can’t eat solid foods.”
Allen is fortunate to have a little help, a home-care worker who comes in for an hour and a half each weekday to assist with personal care for her husband.
But most of her time is devoted to looking after her husband.
“I’m alone with him on the weekends, so I do everything for him on the weekends,” said Allen, who is charged for home care by the province according to her income.
The same is true for respite care, designed to provide a break for people who are looking after relatives and keep them from suffering burnout.
“I only did that the once, and it was back in October,” Allen said of her respite care experience.
“I went away for a week and he went into a nursing home for 10 days. I really didn’t like to leave him behind, I felt bad for that, but he’s in no condition to travel, and that week of rest really helped my (bad back). I came back feeling a lot better.”
Allen’s grandson works on a cruise ship, and she went on a cruise with three other family members in the fall. It’s something she would like to do every year.
“My state of mind was good after getting away for a week,” she said.
“It’s very difficult to find the space to put him somewhere. When I went away for that week, I had a hard job finding a place to place him. I had to put him down in Musquodoboit, that’s the only place that was available for that date.”
Respite care is subsidized. The charge for a bed is on a sliding scale, ranging from a high of $34.75 per day down to $17.39 per day for a low-income person or someone on social assistance.
“I speak to a number of families on our help line, and most families find that the in-facility respite care is quite reasonably priced,” said Wenda MacDonald, manager of client services for the Alzheimer Society of Nova Scotia.
“For some families, it’s always going to be a barrier, for low-income families, but the actual price is quite low for the in-facility respite. For sure, I’ve heard some people say it is a barrier, but for many, they’re falling into the first couple of levels of cost and they’re not complaining about the cost of that. Now, if people go privately, we have heard the cost is sometimes prohibitive.”
But there are just 43 respite beds in the province so, like Allen, some caregivers have to travel to find a spot for a loved one so they can get a break.
“Generally, it is within that zone of 100 kilometres,” said Health Minister Leo Glavine.
“We try to make sure that that is the upper limit. … Generally, more and more of the nursing homes … do have a respite bed opportunity for family. So that has become almost part of the delivery of long-term care.”
A patient can stay in a licensed respite bed for 60 days within a calendar year, but only half of those in summer, when demand is highest.
“Caregiver well-being is extremely important, for if the caregiver experiences burnout, then their loved one will probably have to be hospitalized or placed in long-term care,” said Angus Campbell, executive director of Caregivers Nova Scotia, referring to studies and anecdotal evidence.
Caregivers Nova Scotia, a non-profit organization that supports unpaid caregivers, provides 17 monthly support groups, in addition to educational workshops, and the most popular is caregiver stress management.