Man Spends $1-Million so Wife With Dementia can Live at Home

By: Rob Carrick

A man loved his wife so much he spent $1-million over a decade so she could live at home, despite suffering from dementia. That story is told by Globe and Mail health columnist André Picard in his new book, Neglected No More: The Urgent Need to Improve the Lives of Canada’s Elders in the Wake of a Pandemic.

Mr. Picard brings a different set of eyes to the issue of long-term care than you’d typically find in the personal finance world, where long-term care often gets treated like an after-thought. Here’s a Q&A I did with him recently by e-mail on long-term care and what it could mean to your retirement:

Q: André, we have a wave of retiring baby boomers entering retirement and looking ahead to a time when they may not be able to look after themselves and live independently. What would you tell them about long-term care homes, based on what you’ve seen in the pandemic?

A: Long-term care homes are essential for most people with 24/7 care needs. But LTC should be a last resort, not the default setting for elders with care needs. Overall, only about seven per cent of elders in Canada are in care homes but that’s still almost double most Western countries, but that increases gradually hitting about 50 per cent for centenarians. The large majority of elders live in the community but we need to make that easier by investing more in supportive housing and home and community. Also, LTC homes should look like homes, not prisons. We need smaller facilities with private rooms not wards with 3-4 beds to a room.

Q: What’s your take on retirement homes, as distinct from long-term care? I’m thinking of places with seniors in communities that offer independent living but communal meals and activities?

A: There is a lot to be said for retirement homes and communities geared to the needs of elders. However, when care needs increase, they can become costly very quickly. Because of wait lists in long-term care facilities and lack of access to care, many retirement homes have become de facto LTC homes, without adequate regulation and oversight. What elders need is a wide range of options so they can choose the living arrangements that best suit them. Too many of these decisions get made in times of crisis, not in a planned manner.

Q: Cost-wise, do you have any thoughts on how the cost of living in a long-term care facility compares with buying home care services and retrofitting a home?

A: Care is costly, and too few people plan for those costs. A spot in a long-term care home can range from $2,000 to $15,000 monthly. That only gives you about three hours of hands-on care daily, so many families supplement it with services from home care workers who come to the long-term care home. Home care costs can add up quickly as a person’s health deteriorates. In my book, I wrote about one man who spent more than $1-million on home care services over a decade to keep his wife at home as she lived with dementia, much of it back-loaded in the last couple of years. In the grand scheme of things, retrofitting is a relatively minor cost; it’s labour costs that add up. Both options, LTC and home care, also require a lot of time commitment on the part of family members; the bulk of care is provided by unpaid family caregivers.

Q: What happens to the quality of life in existing long-term care homes if they lose popularity and there’s a decline in the flow of new residents and the monthly fees they pay? Could there be a financial crunch at these facilities that would affect their current clients?

A: With more than 40,000 people on wait lists, long-term care homes are not lacking clientele. But many operators are getting out because of onerous regulations and lack of return. There is also a political push to get rid of for-profit homes, even though they make up more than half of facilities in provinces like Ontario. LTC home operators make all their money on rent, and real estate, and very little on the care. As a result, there is a boom in retirement homes where, as I mentioned, care is provided à la carte by outside agencies.

Q: The financial industry often tries to sell people on saving and investing for retirement by showing images of seniors riding scooters and hiking. Do you think we need to play up the idea of retirement saving as a way of ensuring you live the best possible final years of life?

A: A 65-year-old Canadian, on average, will live another 25 years. And the vast majority of elders are healthy and active. But very few people think seriously about how they will pay for decades of retirement living and, just as importantly, pay for the often-exorbitant costs that come with a decline in health in their final years. The goal should be to ensure you enjoy best quality of life right to the end, and that takes planning. I often say that the most important conversations we have about aging should take place with family members at the kitchen table, while we’re still healthy. A lot of poor decisions get made in times of crisis.