Older spouses struggle to care for loved ones with dementia

It's been nearly four years since Russ Kellogg's wife, Frances, was diagnosed with Alzheimer's disease. Since then he's been caring for her on a full-time basis at their home in Estey's Bridge, a rural community 18 kilometres north of Fredericton. 

The retired couple, who are both 69, were once socially active members of their local curling club and bowling league. They enjoyed hosting friends and snowshoeing in their back woods. 

Now, the disease has progressed to the point that Frances doesn't always recognize her husband, and she can't be left alone. Except for a weekly Monday morning grocery run, the couple spend all of their time at home.  

"I get up, get her dressed and we get our coffee and our morning pills," Kellogg said of his wife of 34 years.  

"I do the laundry, the cooking, the cleaning, as best I can. I clean the kitty litter box. In the summertime, it's mow the grass." 

Kellogg knows that caring for Frances at home has been good for her, but he admits it's taken a toll on his well being. He barely sleeps more than five hours a night and he's lost 25 pounds in the last year.

His experience is similar to the growing numbers of seniors across the country who are full-time caregivers of a spouse or partner. According to Statistics Canada, just over a third of seniors aged 65 and older provide care for a spouse or partner. The number jumps to half for those 85 and older.

Caregiving can come with additional challenges for those who are seniors. Some are dealing with their own health issues. Others live on fixed incomes and then find themselves responsible for all aspects of care of a spouse or partner — grooming, nutrition, managing medications and appointments, household chores and emotional support. 

The loneliness of caregiving

Along with the day-to-day responsibilities, Kellogg said isolation is one of the hardest things to deal with. Except for a weekly visit from his wife's niece, Jennifer Archibald, who gives him a break for a few hours, he is on his own. 

Visits from friends have become more infrequent, and as a couple he and Frances can no longer enjoy the outdoor activities they once used to do. 

"We had bought snowshoes and I like to snowshoe in the woods," he said. "Can't do that now. I have a four-wheeler and we can't just hop on that and head for the trails. 

"We used to have fun. Can't have fun anymore. It's just not there." 

Kellogg knows support is available, but finds navigating it confusing and time-consuming. Another issue is the availability of programs like respite care as there is a shortage of home-care workers in New Brunswick and across the country.

 All of this has left him feeling alone and mentally exhausted.

"Literally one day here, I don't know, I was having a particularly bad day," he said. "I just sat down in this chair and I bet you I bawled my eyes out for a half an hour, and she couldn't understand why … She's just not there anymore." 

Janet Fast researches policy and programs around aging at the University of Alberta in Edmonton. She calls caregivers such as Russ Kellogg the unacknowledged heroes of the health-care system. They provide millions of unpaid hours to care for loved ones, she said, which keeps them out of the system. 

Fast is calling on governments to do more by enabling more unpaid caregivers to qualify for subsidized home-care programs. Changing income eligibility requirements for these programs, she believes, would help ease the stress, isolation and burnout many caregivers experience. 

"There needs to be a concerted effort to make sure we have enough high quality, affordable home care," she said. "It takes some politicians with both vision and empathy to commit to doing something concrete." 

The challenge of caregiving

Navigating care for a loved one includes more than managing the medical side of a diagnosis. It can include learning about the legal and financial processes that many caregivers find themselves having to take on. 

Across the country, the rules and requirements vary for what caregivers need to do to receive support for themselves and the person receiving care.

Some provinces, such as Nova Scotia and Prince Edward Island, have navigators whose job it is to help caregivers make sense of the health care and other systems. In New Brunswick, the province has a dementia navigation program run by the University of New Brunswick, Horizon Health Network, and St. Thomas University. For seniors whose loved ones don't have dementia, they are directed to Social Supports NB, which is an online resource. 

Chandra MacBean, executive director of the Alzheimer Society of New Brunswick, said navigating care is one of the biggest stressors for the senior caregivers her organization works with. 

Unfortunately, caregivers are not always given information early enough in the diagnosis of a loved one, she said. Then they struggle later to manage the complex problems that come with a progressive disease like dementia. 

"You don't know what you don't know," MacBean said. "That's not meant to sound dismissive or condescending, but it's an experience nobody's walked until they've walked it."  

For caregivers supporting a loved one with Alzheimer's, the organization has developed its own program called First Link. It helps to guide caregivers through the medical, legal and financial aspects of care. 

The cost of caregiving

Another stress that many face is the cost of care. According to research from the Canadian Centre for Caregiving Excellence, a national nonprofit that advocates for care providers, most unpaid caregivers average $5,000 a year in out-of-pocket costs. This might include costs for medication and medical services not covered by insurance. 

For seniors who are able to access respite care, it can cost from $25 to $50 an hour. Transportation costs can also add up for seniors who no longer drive, especially if they live in rural areas and travel to and from medical appointments. 

Then, there is the cost of long-term care. This is something Kellogg worries about. He knows that one day he will no longer be able to care for his wife at home. There are two nearby long-term care homes that could provide the care Frances needs, but the waiting lists are long and the costs are high. 

"We would be responsible for more than half of everything together in order to put her in a home," he said. 

Both he and Frances have military pensions. "They would take all of hers and half of mine in order to make it up. There are a lot of seniors out there that don't have the finances." 

The federal and provincial governments have financial programs for caregivers, but the support mostly comes in the form of non-refundable tax credits. This means there is only a real benefit if the caregiver is expecting to pay taxes. For caregivers on a fixed income, these kinds of tax credits are not always beneficial. 

Other benefit programs are designed to help caregivers who are employed. For example, there are employment insurance benefits for those needing to take time off work to care for a loved one. 

There are also government grants and benefits to retrofit a home to make it wheelchair accessible or for safety. They don't, however, always cover the full cost of repairs, leaving caregivers to pay for the rest. 

Monthly Caregiver Allowance 

In other places, such as France, Germany, the Netherlands, the United Kingdom, Sweden and Norway, monthly caregiving allowances are provided. Caregiving is seen as a job that works in tandem with the health-care system. 

In Canada, Nova Scotia is the only province that provides a monthly caregiver benefit at $400 a month. It is considered income and is taxable. 

Aging population means more senior caregivers

Atlantic Canada currently has the oldest population in the country. Nearly a quarter of the region's residents are over 65, compared to 15 per cent in the rest of the country. In the next two decades, Atlantic Canada will have the highest percentage of seniors aged 85 or older.

This shift is the result of a slowing population growth combined with a significantly longer life expectancy. And with an aging population comes the increased need for health care and caregiving support.

According to James Janeiro, director of policy and government relations with the Canadian Centre for Caregiving Excellence, the number of seniors who will find themselves as full-time caregivers to a spouse or loved one is expected to rise dramatically in the coming decade. 

He says if we expect unpaid caregivers to do the job that the health-care system cannot sustain, the attitude of policy makers needs to change. 

"For every hour of care delivered by the health-care system, caregivers are out there delivering three hours of care," he said. "This is not a favour. This is the bedrock on which our health-care system's ability to function actually rests." 

As for Kellogg, he is taking this role a day at a time. He remains committed to keeping his wife at home for as long as he can, but admits even just a little bit of help would make his role as full-time caregiver less stressful and less lonely.

"If I could just pick up the phone and say, 'I need somebody to look after her for the next three hours. Could you send someone?' But that doesn't happen," he said. 

"I can't be spontaneous. Everything now is totally regimented. I really hadn't envisioned this kind of retirement gig."