the financial impact of parkinson’s disease: how a lack of funding and access to care is hurting families
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access to long-term care is also an issue for people who require publicly-funded care. wait times can be exceptionally long, and private care is nowhere near affordable for the average person.
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john phillips and his wife carol began their lives together after meeting on a student exchange between genoa, italy, and new york city, united states. carol was travelling home after being in italy, while john, originally from the united kingdom, was heading overseas to spend some time in the states.
carol told john that if he’d like to see niagara falls, he should give her a call. he took her up on her offer, and as john puts it, the rest is history. the couple spent their lives together raising their daughter jacqui, with carol working in the educational sector and john in manufacturing.
“she was a bright, intelligent woman. she had a mind like a steel trap,” john said. “and that’s my carol.”
today, carol lives at meadows care home in lancaster, ontario, because she has severe parkinson’s disease. what started as a simple tremor 18 years ago progressed into a debilitating set of symptoms that led to her being admitted into the home.
“she cannot walk. she cannot hold cutlery to feed herself,” john said when discussing the symptoms she copes with daily.
her parkinson’s was well-managed at home with family until an incident five years ago led to her new place of residence.
“my daughter was over on the saturday. we’d watched a couple of movies during the afternoon, and jackie said, ‘mom, dad and i will go make supper. you stay down here and have a sleep or watch tv.’”
before john and his daughter had the chance to make it out of the family room, carol began screaming about hallucinations of small, black things surrounding her in her home, coming to get her.
“my hair is standing on end, telling you to be honest,” he said.
he and his daughter tried to calm carol down but to no avail. they had to call ems to help them with her. they took her to joseph brant hospital, which, as john puts it, was “extraordinary,” where she stayed for two months.
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the amount of medication she was taking for parkinson’s disease had affected her brain irrevocably, and she went straight from joseph brant to meadows.
john visits carol every single day now, helping her with her afternoon activities and feeding her at night.
unfortunately, even with meadows being “one of the best homes in the area,” according to john, the lack of funding for these types of care homes makes it challenging for even the best medical providers to give adequate care.
according to a report by parkinson’s canada, the economic burden of parkinson’s in canada, the total cost of caring for those with the disease sits at roughly $3.3 billion. roughly 90 per cent of those costs fall on the shoulders of the families and those diagnosed with the disease.
karen lee, president and ceo of parkinson canada, hopes that things will change for the better because, as it currently stands, caring for parkinson’s disease in the way people deserve isn’t financially feasible for much of the population.
“we’re calling on governments to make it more expandable,” she said. “we want more valuation and work with governments to see how we can financially support those living with parkinson’s.”
the mission is so important because parkinson’s care isn’t cheap. out-of-pocket expenses for long term care average roughly $43,416 per year.
john and his family know this financial burden all too well, from having to pay for out-of-pocket expenses to learning just how poorly funded the long-term homes are.
lack of funding equals lack of care in long-term homes
while carol is in a good care home, there are still issues she faces in her care every day because of a lack of funding, specifically with hiring enough staff to cover all the people who stay there.
john talks about how carol is supposed to get certain medications to treat her parkinson’s disease symptoms at a specific time each day, and if that time is missed, it can lead to severe consequences.
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unfortunately, there isn’t enough staff for carol and others in care homes to ensure that people get their medication at that exact time. hence, the established guidelines allow workers to have an hour window from when they’ve been prescribed.
if carol is prescribed to take her medication at 11 a.m., caretakers can give her her medication anywhere between 10 a.m. and 12 p.m., a large window that can cause her to experience worsening symptoms or take too many pills too close together and sleep all day.
“i got there (to the home) at five to 12, and the first thing i said was, ‘has she had her 11 (a.m.)?” john recalls about a visit he had with her on thanksgiving day. the nurse simply replied that she was about to give it to her, almost an hour after she’s supposed to receive it but well within the guidelines.
“why didn’t she get it?” john asked her. the nurse responded that she was giving an intravenous to a different patient.
since there was no one else there to cover the medication while other patients needed something, carol was left to wait for the pills she desperately needed to keep her mental symptoms, including hallucinations, at bay.
“i think to some degree it’s incompetence, a degree of laziness, a lack of understanding that, yes, you can delay giving somebody a tylenol for an hour, but it’s very different when you’re actually impacting on the behaviour of this person and how she can function,” john said.
he went to the director of the home to address the issue and was told that getting carol her pills on time would “never happen” due to staff levels, a jarring reality that many people living in care homes have to face every day.
“there were three psws per shift, and there are two wings where she’s at. so, there’s 30 beds, and they were covering about one psw for 10,” john said. “it just changed about two and half months ago, and there are four now. has it improved? sure, but it’s still woefully inadequate.”
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john has already had to sell his and carol’s home to help support her care in the long-term facility, and the only way they could afford private one-on-one care would be if “i win (lotto) 6/49 next week.”
inequitable access to care and a lack of understanding of parkinson’s disease
“it’s inequitable,” john said of how the government allocates health funds. “if i had a heart attack today and needed open heart surgery or a new heart, that will be paid for. how many hundreds of thousands of dollars? a hundred, two hundred at today’s rates. that would buy a lot of time in a long-term care home. but that funding isn’t available to me or anybody else.”
the costs associated with healthcare procedures and care vary significantly, but in some cases, those who develop progressive diseases, such as parkinson’s, are left out in the cold, while other diseases seem to be treated with a blank cheque.
john believes that it has a lot to do with the public and government’s perception of what parkinson’s disease really is, how it affects people, and how severe it can be.
“the general public perception is, including many of our politicians, ‘oh, yeah. parkinson’s. that’s where people start to tremble a little bit. no big deal,’” he said. “and that’s true for two years, but beyond that is a long, slippery, awful, awful, descent.”
when the descent happens, people living with parkinson’s disease are left to contend with several areas of care that, financially, most people cannot afford.
many also become full-time caregivers, having to retire early or find a new form of employment to stay financially afloat while dedicating the majority of their time to their loved ones.
“it (being diagnosed with parkinson’s disease) really requires your family to be involved as well as the healthcare system, and so, when we think about all those things, it includes not only what we think of top of line like medication, homecare, changes you have to make in daily life, but also the impact on the economy,” said karen. “one really interesting thing that we saw in this report was that 53 per cent of people who were part of the survey talked about how they had to change their working environment. so, essentially, either retire early, look for different jobs to accommodate their diagnosis of parkinson’s.”
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for those who already live frugally because they have no other choice, getting sick with parkinson’s can be a one-way ticket to the worst health outcomes imaginable, especially when the disease continues to worsen and get more expensive over time.
access to long-term care is also an issue for people who require publicly-funded care. wait times can be exceptionally long, and private care is nowhere near affordable for the average person.
“if you bring them home (loved ones) and you cope for a year and then you want to get a place (long-term care), you’re going to be on a waiting life for five or six years. it’s going to be intolerable,” john said.
parkinson’s canada calls for change
to help those living with the debilitating disease in canada, parkinson’s canada aims to make changes by providing the details of the report to the powers that be to show them just how difficult it is for canadians to afford to get sick.
they aren’t asking for the government to foot the entire bill, but certain out-of-pocket expenses should be included in coverage so that those who are forced to contend with a parkinson’s diagnosis can have a better chance at adequate care.
“those are some of the things that this report is the initial calling out for,” said karen, later continuing, “looking at policies and funding models that we could look at to really support not only the person but also the families. so, the caregivers as well, that’s really critical, and that’s, i think, a big part of a lot of disease and specifically parkinson’s.”
things such as access to medications, which can cost upwards of $1,479 per year for those without insurance, as well as access to healthcare professionals, long-term care, and other forms of treatment, including physiotherapy, occupational therapy, speech therapy, and psychologists, should all be considered.
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“it’s really having that flexibility to support people in their journey,” said karen.
as for john, he would like to see the change in the health ministry that helps encourage better understanding, awareness, and care for parkinson’s and reach a level that’s required to keep people as healthy as possible for as long as possible.
“my brother-in-law, his wife passed a few months ago. she got alzheimer’s and pretty much the same thing. but she was put into an institution, into her home, and she lived there for about three years, and then she passed, which was a blessing, and, i mean, she didn’t know him for the last year of being in there, and then she passed, but they get treated the same (as people with parkinson’s disease),” he said. “shut away, out of sight, out of mind, like they just don’t want to be dealt with kind of. and that’s coming down from the health ministry, and i have to believe it is. otherwise, they would provide the funds.”
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