$200,000 for ‘mediocre care’: Parkinson’s battle drains Ontario couple

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

According to Parkinson’s Canada, the cost of this complex disease in Canada is expected to reach $4.4 billion by 2034, leaving many patients and healthcare providers like Phillips in severe economic turmoil.

Diagnosed at age 59, Carol is now 77 and in the late stages of the disease. This new reality has drastically changed her life and her husband’s financial stability.

Her condition has not only robbed her of her mobility and speech, but has also forced her husband John, a retired vice-president of sales, to deplete their savings and even sell their family home to cover costs that Ontario’s healthcare system cannot afford. can pay.

According to John, it is “not nearly enough.”

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For John, the progress is not only financially but also emotionally heartbreaking.

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

‘$200,000 — just for mediocre care’

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

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She was hospitalized for eight weeks, where doctors performed tests before attributing her worsening condition to the side effects of her Parkinson’s drug, Levodopa.

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

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

This condition has left Carol almost completely dependent on a caregiver, requiring her to be placed in a long-term care home where she can be cared for. The costs were a financial challenge for John, who is also 77.

Carol’s living expenses are over $3,000 per month, not including additional costs such as medications, physical therapy and home modifications.

“Over the last five years, it’s been almost $200,000 just for mediocre care,” John said, explaining that despite retirement, they’ve had to get their savings elsewhere.

‘I sold the house we initially wanted to give to our daughter… but that money is finite. How long will she live? How long will I live? Will it be enough to sustain us?”

‘Staff quality is declining’

These questions have become a new norm for John and other Canadian families dealing with Parkinson’s. The financial pressures they face are part of a broader crisis reported by Parkinson Canada, with the economic toll on individuals, healthcare providers and the healthcare system expected to reach $4.4 billion.

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According to the report, people with Parkinson’s already spend around $1.4 billion per year, while long-term care alone costs an average of $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,” says Lee.


Because there is no known cure for Parkinson’s disease, the disease progresses rapidly, leaving patients dependent on services and medications that can help manage symptoms. On average, people with Parkinson’s pay an average of $10,800 annually for nurses and support staff, $2,612 for home modifications and $1,479 for medications. Because many caregivers are family members who have quit their jobs, the costs are simply far too high.

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

John has experienced these shortcomings firsthand, noticing the strain on caregivers in the healthcare system.

“The quality of the staff is going down,” John said, recalling a time when Carol accidentally got a double dose of her medication and was “left out in the cold for hours.”

“It’s a terrible disease… and I don’t think a lot of people in ministry really understand what happens to someone when they get Parkinson’s.”

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The Phillips’ story reflects the challenges many Canadian families face in meeting the costs of chronic diseases like Parkinson’s disease.

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

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Prisha Dev

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