Most caregivers make use of specific resources and support programs that reduce the financial impact of caregiving, but it is clear that there is a significant financial burden for individuals and families engaged in caregiving. Currently, over two million people in Canada are providing care for a family or friend with an illness or disability. It has been estimated that the economic value of care that informal caregivers provide in Canada is over $25 billion dollars a year. The financial contribution of caregivers translates into cost-savings for the health and social care system, although there are few financial incentives or mechanisms to support caregivers with the additional costs of providing care at home. Some provinces in Canada are considering legislation to change this.
The people that we interviewed were financially affected in many different ways. Lorna and Inez, for example, both experienced a surprising reduction in expenses because they were doing less than before. Inez said, “Actually the biggest impact is we don’t have to buy gas because we hardly go anywhere.” Most, however, were living with increased personal and home expenses related to caregiving.
Home adaptation and medical equipment
Most caregivers reported additional expenses related to changes at home, equipment or treatment that was not covered by public or private insurance plans. Donovan, for example, explained how he had to get a special cushion fixed for his wife: “It finally came back and it cost us $90 for that. And then within one week, we found that it was still leaking and then we had to buy a new one.”
Yes, Assistive Devices Program in Ontario enabled us to buy: he has, [name husband] has a scooter suitable in the house; and he has a big old scooter that we’ve had for years that he uses outside on the lawn, and he has a trailer hitch on it even—I think he’s the only guy with a scooter and a trailer hitch—and he has fun with that outside; and then we have one for the van.
Caregivers reported additional expenses for medication and hospital visits. Several caregivers described their appreciation for the medical care system in Canada, but Richard explained that, although the medical system is good in Canada, it doesn’t mean that there are no extra costs involved for medication.
Definitely. Again, I say we lived in Canada. I’m saying that because I am now living in the States and I understand there’s added financial pressures down there. I was working for the federal government. I had a healthcare plan that paid 80% of your drugs.
I mean, an ambulance call costs $80. Again we have had thousands of dollars of ambulance calls in the last 3 years, all of which have been covered by our extended medical. But if we didn’t have extended medical, BC medical doesn’t pay for ambulance calls. We would have been paying for all those. So, I mean, we’ve been, we have been really fortunate that way because if you had to add all that financial pressure on the top of everything else—whew!—that would be a really big one. And now they want, they try and charge you $30/day after when they figure you’re not acute at the hospital. So, anyway… You learn all these things, I tell you. I’ve learnt way more than I ever wanted to know about any of this stuff.
There are many other costs that may arise in a care situation. For example, Mrs. Smith’s mother’s care facility was far away, which created many practical issues. Although there were public facilities closer by, there was a four-year waiting list for them. So, she and her husband decided to move her mother to a private institution nearby.
Richard explained, “The money problem worried me a fair amount because we were spending so much. And then, we were fortunate that… at some point, we were just getting ready to go to Maine for more treatment for Vivienne’s lymphedema, but that was going to cost $10,000 US, and friends were even going to try and raise money for us and I felt embarrassed. It affected my pride, and I know it’s false pride, but you want to feel that you can manage. And we were saved by the bell. I don’t know how they did it, but the province where we lived is a poor province, and for many years they did not provide treatment for lymphedema. Finally, just about when we were deciding whether to go or not to Maine, we learned that they had just started up a program with a physiotherapist at the hospital.”
In Matsonia’s case, her husband’s behaviour changed due to medication use and her husband started spending lots of money: “I didn’t realize Bromocriptine was making him do the things that he was doing and making him lie to me. And this was very damaging and also it cost us a lot of money.”
David, who retired early, has recently decided to move to a smaller apartment to reduce costs. Richard re-mortgaged his house to pay for his wife’s medication. Christiane moved to another apartment to reduce costs.
Effects on the caregivers' lives
Not having sufficient funds for the care situation can have serious consequences in peoples’ lives. Donovan, for example, feels he needs therapy because he is feeling very depressed lately, but is unable to pay for this service. Christiane has informed herself about her legal options and mandate in case of her husband’s incapacity, but is not able to pay the associated fees; she explained that her husband can still refuse care despite his mental incapacity.
Luckily, I live close to pretty much everything so I can just walk, but it is hard. My rent is, for where I live, it’s worth it for the security, but it is very expensive because you have to pay your own hot water and heat, and just my rent alone is $950/month. So at the end of the month after all the bills are paid, we maybe have $200 a month, $200 to live on for a month.
When you receive the bills, by the time you get an answer for the cost exemption, you receive bills! The first bill was from January 10 to 30, 31. The month of February was $1711.13. I almost had $4000 in expenses. Eventually you say, “How will I make ends meet with this?” Up to a point that when I got the answer, I looked at the letter; I said, “I don’t believe this.” I called.
And so that’s been a great, a great thing. […] There’s probably not a family caregiver out there who wouldn’t say the same thing, that there could always be more funding. And I look at things I guess slightly differently, from the standpoint of saying the financial cost to me, as the caregiver, I choose not to calculate because I don’t want to know—because it’s probably bad.
In some cases, the caregivers also discovered a way to reduce expenses. Hélène realised that there are little things you can do to be more frugal: “Another silly thing, Air Miles. I’m not going travel now maybe, not now. Air Miles you don’t have to travel with them; you can do anything. So I’m getting free magazine subscriptions and that too helped. ‘Okay, I’ve got my Chatelaine,’ or whatever, ‘free.’”
I have insurance; we are lucky. And I also learned that if you talk to the drug companies they will help you.
In what way? Do you have examples of this?
Rowdyneko is thankful that her husband’s medications are covered by the palliative pharmacare program.
I’m lucky because I have had some personal resource—resources, well like having extended medical. I mean honestly, if we didn’t have extended medical… My husband is now on palliative pharmacare, which I didn’t even know existed until some doctor in the hospital put him on it. So that’s great because now everything, all his medications, are covered regardless, and some over-the-counter medications—that someone who is considered palliative needs—are covered. So that’s fantastic, but you know a lot of people don’t know about that. I have a friend who’s caregiving for her husband, who’s quite a bit older than her, and she didn’t know anything about that. I told her. I said “Get your doctor on that,” because […] I mean, I didn’t know about it until the doctor did it, and we’ve got money for—through our Extendicare—for equipment and nurses if we need it. […] And family assistance plan, because I have availed myself of stress counsellors fairly frequently to give myself some support, but most people don’t have that.
You can find more information about what other caregivers have done to find support and home adaptations, in the Resources topic page.
Employment and paid care
Many caregivers organized privately paid caregivers to help with the care in order to go to work or on holidays.
And you talked about the financial impact?
Next, this coming fall, the 2 women that we have will be leaving, so we have to start the process again to get replacements. And if you deal through an agency and you get somebody from the Philippines, for example that’s where these women are from, it can take 6 months and it’s a frustrating process and expensive.
In several situations, the family income was reduced because of caregiving. There were many reasons for reduced income. For example, Shoshana’s husband was forced to change jobs because of his illness and had a reduced income. Shayna did not advance in her professional life because she would have been unable to combine her new work responsibilities with her care situation at home. Hélène decided to stay home without pay to be able to provide care, and spent her RRSP savings. If you would like to read more about people’s professional life while caregiving, you can visit the topic pages Impact on professional life and career.
He was at the rehab centre for close to a year, and by the time he was ready to get out I, well actually let me just step back a bit. He had been unemployed. We were both self-employed and so we didn’t have any kind of benefits to fall back on. So when this happened to him, he went from having income to having—like a fairly decent income—to having no income at all. And then 2 weeks before the second incident, I lost my contract job. So, we went from having a really high family income to having zero income and zero benefits. No long, no long-term disability benefits, no unemployment, nothing to fall back on, and so that was a really, really—another stressor that was added onto all of this.
Yes. If I had wanted material possessions, luxury and comfort, I would have chosen another path for sure. I’ve chosen this path because for me human value is more important than material values. It has always been like this and will always be. Again, what will be the financial future? I was able to put a little bit of money aside every year. We will see with the Canada Pension Plan… Whoops!