how cognitive decline and failing health destabilize family finances
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financial advisor neela white brought in a private caregiver to help with her dad’s care for six hours a day (back then, it was $25 an hour). when her mom was feeling overwhelmed, she added an overnight caregiver.
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when her dad was diagnosed with pancreatic cancer with only months to live, neela white and her husband renovated their basement to make a grandparent suite and moved her parents in. she didn’t want her mom, a five-time cancer survivor, managing alone during his final days and after he passed away.
that was just the beginning of what turned into a decade for neela as a caregiver—time that she’d never get back. she juggled caring for her parents with her job, raising her daughter and carving out family time with her husband. self-care took a backseat to sleep deprivation and isolation, and the financial strain on the mississauga, ont. family was significant.
between her two parents and their eventual decline, she spent about $700,000 in care.
the reality of caring for aging parents
“whenever i speak at conferences, i will tell the story of my father and my mother, because this is reality,” says neela, 56, a financial advisor in toronto at blue wing advisory group with raymond james financial services. she specializes in preparing clients for health diagnosis, health care and end-of-life conversations and planning.
there’s an ease she has with older clients because of her warmth and openness, and extensive experience. her first career was working in long-term care, and she’s pursued additional certifications that include dementia care, certified patient navigator to support people accessing health care, maid (medical assistance in dying) training and death doula training for end-of-life support.
the canadian institute for health information (cihi) reports that caregivers and care partners of people living with dementia may typically provide 26 hours of care per week and can incur $1,000 in out-of-pocket costs per month, before accounting for career disruption or lost income.
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“when my dad was given three months to live, you kick in as advocate,” neela explains of the role of adult children that’s expected and often taken for granted.
her parents were open about their finances, and she was already managing their money for them. they were also clear about their wishes, values and how they viewed end-of-life.
“they were very transparent about all of that. but when dad got diagnosed, and he was given three months to live, the poor fellow lived 18 miserable months. and that’s when you get the real education of how the health-care system works, the maze, how difficult it is to navigate, how frustrating it is to navigate.”
unfair expectation that family members step in as caregivers
neela is open about the unfairness that comes with the assumption that family members will step in to care for someone who is no longer capable of caring for themselves, whether it’s because of disease, cognitive decline, loss of mobility or a serious car accident. health can deteriorate for anyone at any age, and the sense of obligation can be a heavy emotional strain.
“i think people need to admit they take on caregiving out of guilt and obligation as opposed to love because it exists, and it’s not that you’re a bad daughter because you do it out of guilt,” she says of stigma and judgment that surrounds family caregiving.
“if you say it absolutely sucks and is crushing being a caregiver, people think what a bad kid you are because they describe their experiences as elevating and spiritual. and i’m thinking, you know what? you can’t make that judgment for someone else because you have no idea what their journey is,” she explains.
“if you’re coming once a week to visit and buy groceries and hang out and play cards, well, your caregiving journey is different than what i had. i had to change my father’s catheter. i never thought i’d see my father naked in his lifetime. that’s how we were brought up.”
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neela brought in a private caregiver to help with her dad’s care for six hours a day (back then, it was $25 an hour). when her mom was feeling overwhelmed, she added an overnight caregiver. then his doctor said that her dad should be in palliative care. this was a welcome relief in many ways, but the care is offered for about six months. when her dad was still alive after that time, she got a call saying they needed the bed and he would need to be moved.
“i talked to mom and i said, ‘ma, how are you going to do this? tell me how this is going to work?’ she was so upset she couldn’t make the decision. i did for her. we put him in long-term care in a nursing home.”
what followed wasn’t easy. her mom got breast cancer and had a double mastectomy. two weeks later, when she and neela visited the nursing home, her dad had a bowel movement in his sanitary pad. when no one came to help change and clean him, her mom tried to do it herself and her surgery sutures opened. she started bleeding.
caregiving comes at a high cost
from that point on, neela paid for additional private care until her dad died about a year later with a co-diagnosis of parkinson’s disease.
then her mom had a mild heart attack and fell going up the stairs in the basement suite, hitting her head and breaking her neck. disabled, she was admitted to a rehab centre for six months and then sent back home to neela, dependent on round-the-clock care. neela was advised that she’d be able to get eight to 12 hours a day of private care, provided because of her mom’s condition, but she ended up with three hours a week. again, she brought in private care.
when her mom was later diagnosed with rapid-onset dementia and given three months to live, they moved her into a memory suite in a retirement home. it was like a weight had lifted.
“for the first time, i could breathe as a daughter because i was her overnight care, and she would ring her alarm at night. i’d go running down to ask what’s wrong. she’d say, ‘neela, the house is so quiet.’ it’s 3.30 in the morning. ‘or, neela, no one’s come to give me breakfast,’ and it would be like two in the morning. so, confusion with time, orientation, that sort of thing, that suddenly now it all became too much, being a caregiver, being an employee, being married, being a parent. how does it all fit, especially when you don’t know what to expect, you don’t know what it’s going to cost, you don’t know the navigation?”
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this is why conversations and planning about care and finances are critical, because these things don’t “miraculously just happen,” she says, now on a mission to spread awareness about what can be the costly realities of caregiving at a time when dementia is rising in our aging population.
“so, to assume that your daughter, because caregivers still tend to be daughters, is going to be your caregiver is unfair. it’s selfish. to think that your kids are going to stay with you forever out of obligation and guilt to take care of you because that is your assumption without discussing their plans is wrong,” she says.
“you are not just asking someone to pick up your groceries, you are asking someone to use part of their life.”
neela has become an outspoken advocate for getting financial plans in order and having a health contingency fund, just as you would save for a vacation. she says she’s proud to highlight a new campaign by raymond james and baycrest foundation: brain health and financial planning guide, offering a practical resource for families and advisors.
canadians living with dementia is on the rise
research from raymond james found that 63 per cent of canadians worry about how cognitive decline could affect their financial future. yet only 29 per cent feel strongly aligned with their families on inheritance and wealth planning when brain health is part of the conversation. meanwhile, more than 770,000 canadians are already living with dementia, and cases are projected to reach nearly one million by 2031.
cognitive changes can start decades before symptoms appear, and financial management is usually among the first daily functions affected by cognitive decline.
when neela started in the financial services industry, the big, stigmatized conversation was about cancer, the c-word. no one wanted to discuss that. now the stigmatized conversation is dementia, specifically alzheimer’s, “because people are suddenly afraid that as soon as they say to someone that they have alzheimer’s, the assumption is going to be, you’re confused, you are incapable, you won’t remember me. but the diagnosis tends to come at stage two or three, when there’s still so much living and identity left.”
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the current focus on brain health and lifestyle habits to support brain health could make these conversations about planning less intimidating.
raymond james experts also note that part-time home care can cost tens of thousands annually, intensive care can be more than $100,000 per year, and round-the-clock home care can reach $300,000 or more in some cases. these costs can alter retirement, gifting intentions and the amount preserved for the next generation.
the 2026 report on caring in canada by the canadian centre for caregiving excellence says that approximately three-quarters of caregivers report negative impacts on their well-being, and about two in five experience financial hardship. despite these ongoing challenges, caregivers now report increased difficulty in finding affordable, high-quality services and care options.
as neela points out, “one person globally is diagnosed with dementia every three seconds. in canada, it’s about 17 people an hour.” campaigns like this one are important to raise awareness and encourage people to start talking about plans for their care, she says.
“there’s no way we can’t all benefit from this on a personal level, on a familial level, on a client level to have [a financial advisor] to talk to. i hope this has a huge ripple effect.”
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