Living with ‘a kind of perfect storm’

Hey there, time traveller!
This article was published 27/01/2024 (658 days ago), so information in it may no longer be current.

Curtis McRae considers himself among the fortunate of the many Canadians caring for a loved one with dementia.

“I’m a farmer and so I try to be positive all the time,” says the 50-year-old husband to Nancy, 52, who was diagnosed with early onset dementia in fall of 2022.

Maintaining that state of mind hasn’t been easy after his wife was diagnosed with frontotemporal dementia, a progressive neurological disease affecting behaviour, memory, speech and movement, and for which, there is no cure.

Still, McRae points to his good fortune after finding a room for his wife at a nearby assisted living facility providing 24-hour care.

“You can kind of imagine how hard of a decision that is to make, especially so young,” he says.

“But my goodness, that was the best decision I could have made for her given the circumstances.”

That said, the family still faces immense difficulties, including financial.

“The kids were almost out of the house, and my wife and I were looking forward to all the fun stuff,” he says, adding they had planned to travel extensively during and prior to retirement.

Now, just affording their day-to-day costs — including Nancy’s care — are an ongoing challenge, let alone planning and saving for retirement.

The McRae’s challenges illustrate the hardships many of the nearly 20,000 Manitobans living with dementia and their families face, particularly as supports offered by our overtaxed health care system often fall short, leaving many to provide it themselves, or pay out of pocket.

The financial impact is often more profound for individuals, like Nancy McRae, diagnosed with early onset dementia, as highlighted in a new report from the Canadian Alzheimer Society, released for Alzheimer’s Awareness Month this January.

It points to how many people with early onset dementia (diagnosis before age 65) and their families often face twin challenges.

“The care partner has to consider whether to stop working to provide care themselves, but for many, that’s just not financially possible,” says Erin Crawford, chief executive officer of Alzheimer Society of Manitoba.

The alternative is not any better. Because support provided by the public system frequently falls short, many must pay for private care, which is challenging to afford even when one spouse continues working full-time.

“It’s a kind of perfect storm,” Crawford notes.

Many individuals are in the midst of saving as much as possible for retirement while often still supporting children, paying off a mortgage and juggling other costs like car loans.

“It’s really tough because people struggle with managing care for a loved one and then, they have to do all the financial stuff,” says Christine Van Cauwenberghe, head of financial planning at IG Wealth Management.

“What’s more, the system of tax credits and deductions is very complex, and what’s available varies based on someone’s unique situation.”

A good first step is seeking out a tax professional with experience helping individuals apply successfully for the disability tax credit, a sort of “anchor” benefit often required to qualify for other benefits, she adds.

Other government programs include Employment Insurance sickness benefits, caregiver credits and deductions for eligible medical expenses. Van Cauwenberghe adds having a power of attorney, health care directive and will are all important to have, ideally, in place long before a dementia diagnosis. Getting these in place after dementia is diagnosed can further add to the challenges families face, she adds.

Long-term and critical care coverage are also worth considering well before a diagnosis with their benefits helping cover care costs, Van Cauwenberghe further notes.

Although Manitoba’s health care system does provide support, including income-tested home care and long-term beds, “families still are the first line of defence with other programs often coming in at the edges,” Crawford says.

Depending on the region, individuals may also be eligible for respite day programs “to attend one day a week, but many don’t have access to that,” she adds.

Count the McRaes among them.

“Their offer was this: ‘She needs home care and other supports, but we don’t have anybody in the Interlake to help.’”

McRae started looking for alternatives, leading him to an assisted living facility in Winnipeg’s northeast, offering supportive housing for individuals with dementia.

“I am the luckiest person in the world because when we got home from the tour of the assisted living home, my wife started packing her bags because she was so excited about the place.”

Between her workplace and Canada Pension Plan (CPP) disability benefits, the monthly rent is affordable — almost.

McRae adds he still pays out of pocket several hundred dollars a month, and it will not be until after this tax season when he knows for certain if they qualify for enough credits and deductions to sustain their situation financially.

“At that point, I will know whether we can do this at least for a few more years before I have to declare bankruptcy, right?” McRae says with a little, albeit slightly nervous, laugh.