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.”
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.
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.
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.’”
Rowdyneko is thankful that her husband’s medications are covered by the palliative pharmacare program.
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.
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.