Parkinson’s is draining this Ontario couple. Price to fight disease will only increase

After more than 54 years of marriage, John and Carol Phillips are facing their biggest struggle yet: Carol’s expensive battle with Parkinson’s disease.

According to Parkinson’s Canada, the costs of this complex disease are expected to hit $4.4 billion by 2034 in Canada, putting many patients and caregivers, like the Phillips, in serious economic turmoil.

Carol, diagnosed at 59 years old, is now 77 and in the late stages of the disease. This new reality has drastically reshaped her life and her husband’s financial stability.

Her condition has not only robbed her of mobility and speech but has also forced her husband John, a retired sales VP, to exhaust their savings and even sell their family home to cover costs that the Ontario health system doesn’t.

According to John, it’s “nowhere near enough.”

For John, the progression has heartbreaking not only financially but emotionally as well.

“She was a bright woman. She had a mind like a steel trap,” he said, recalling Carol’s years as a school principal and curriculum writer.

All that changed five years ago during a visit from the Burlington couple’s daughter on a Saturday afternoon. The family was spending quality time, watching TV, when Carol experienced a rather sudden, terrifying episode where she hallucinated, screaming that figures were “walking on the walls” and “on the ceilings,” John said.

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She was admitted to hospital for eight weeks, where doctors ran tests before attributing her worsening state to side effects of her Parkinson’s medication, Levodopa.

Since then, Carol has experienced severe dementia, frequent hallucinations and a loss of most motor skills, including eating and writing.

“She drools constantly…. I’ll go through a whole box of tissues just wiping the spittle away in a four-hour period,” John shared.

This state has left Carol almost entirely dependent on a caregiver, which requires her to be kept in a long-term care home where she can be looked after. The cost has been financially challenging for John, who is also 77.

Carol’s living costs are over $3,000 a month, excluding additional expenses like medication, physiotherapy and home modifications.

“For the past five years, it’s been close to $200,000 — just for mediocre care,” John said, explaining that despite a pension, they’ve had to draw savings from elsewhere.

“I sold the home we initially wanted to give our daughter … but those funds are finite. How long will she live? How long will I live? Will it be enough to sustain us?”

These questions have become a new norm for John and other Canadian families dealing with Parkinson’s. The financial strain they face is part of a wider crisis reported by Parkinson Canada, where the economic toll on individuals, caregivers and the health-care system is projected to reach $4.4 billion.

According to the report, people living with Parkinson’s already spend around $1.4 billion annually, with long-term care alone averaging $43,416 per year.

Karen Lee, CEO of Parkinson Canada, emphasized that the burden extends beyond costs.

“If we want people with Parkinson’s to live well, they need more support,” Lee said.

With no known cure for Parkinson’s, the disease progresses rapidly, leaving patients to rely on services and medication that can help tackle symptoms. On average, people with Parkinson’s pay a yearly average of $10,800 for nurse and support workers, $2,612 for home modifications and $1,479 for medications. With many caregivers being family members who quit jobs, the costs are simply way too high.

“No one should have to choose between life-changing medication, food and shelter,” Lee said.

John has experienced these inadequacies first-hand, noting the strain on caregivers in the health system.

“Quality of staff is deteriorating,” John said as he recalled a time when Carol was accidentally given a double dose of her medications and was “out cold for hours.”

“It’s a God-awful disease … and I don’t think many of the people in the ministry have a true understanding of what happens to a person when they get Parkinson’s.”

The Phillips’ story reflects the challenges many Canadian families are facing to bear the costs of chronic illnesses like Parkinson’s.

“We need policymakers to understand the financial impact of Parkinson’s on everyone — the individual, the family and the health-care system — so that affordable treatments and supportive policies can be made accessible to the Parkinson’s community,” Lee said.

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