Most of the caregivers we interviewed experienced a point in time where they realized that they couldn’t do everything alone and needed support. Caregivers found different resources depending on their situation, their needs and what services were available in their area. Several caregivers mentioned that a centralized source of information would be useful, although no such resource is available in most places. Sometimes, caregivers simply didn’t know what resources and support existed. In most areas of Canada, more could be done to share information about current services and support in a way that caregivers and their families find useful.
Caregiver support groups and disease specific organizations
About half of the people we interviewed had joined a caregivers’ support group. Generally this was valued as a good starting point where they could receive information on caregiving and to get support.
Some people stopped attending support groups. Sheni, for example, found great support from an online spousal support group. She attended face-to-face meetings and still has contact with certain members of the group. Although she visited the site less often once she got over her initial excitement, she definitely thinks people should check out this resource and sign-up; it was still very helpful at first.
Grocery and pharmacy delivery services
Simple services can make a big difference. For example, Claire said, “So, I think it’s about being creative and finding those little spaces where you can find those moments.” Claire and Luke came up with the idea of having their groceries delivered by ordering them online, which saves them a lot of time. Joseph used to pick up medications for his wife during work hours and then bring them home in case of an emergency: “We learned that the pharmacy had a delivery service, but I had never thought about asking for this service because I was doing it. I took upon myself to attend to all her needs.”
Several caregivers made use of door-to-door transportation services. Sometimes they were run by volunteers and sometimes they were professionally organized.
Alyce has insurance coverage to get a chauffeur to take her husband places; this is a great help when it is cold and icy outside, and the driver gives them a hand.
In Snoopey’s case, the door-to-door service once cancelled 24 hours before their appointment even though she had booked three weeks beforehand.
Day programs, respite and holidays
Like Matsonia, there were other caregivers who made use of day programs for their care recipient. Sheni’s husband goes to a day program on Mondays and Tuesdays. Sheni thinks it is good for him to get out and socialize. Joanne’s mother used to go to a day program but stopped because she felt everybody there was old.
Some people arranged to have paid caregivers look after the care recipient so they could have some time for themselves. Donovan and his wife, for example, had made arrangements for people to come and help out before they decided to have live-in-caregivers. Michael and Lillian’s son has always been in specialized schools and after school they had privately paid caregivers. Now that he has turned 18, they will have to look into different options for daytime care.
Home adaptation and other resources
Several caregivers had made home modifications they found useful, such as a ceiling pole, railings, and a walk-in bathtub. Many had received funding for these modifications through local or government programs and had a specialist come to their home to advise them on the appropriate changes. Others had made changes in the home themselves, such as removing doors to make the home more accessible. Some caregivers decided to move to a new home that was already adapted for their needs.
Several caregivers needed specialized equipment like scooters, or elevators. Rachel’s mother, for example, moved to a disability suite that is partly funded by the government and partly by a Christian charity. David said, “My wife has received a wheelchair free of charge, scooters free of charge, car adaptations free of charge. So there are a lot of social programs that are in place that people need to be aware of. And, I mean, nothing is perfect, but those have been good things for her and for us.”
You can read more about resources that support caregivers and/or caregiving in specific topic pages. You can also visit our Resource section to find links to other organizations and useful tools and services such as Tyze (a caregiving planning tool) and Caring voice (a telephone service) to help you with caregiving. In the topic page Society and caregiving you can read more about how people felt about the support services that exist for caregivers.
Several caregivers spoke about the impact of caregiving on their mental health. Many caregivers have made use of counselling services or have received help from social workers. You can read more about this in the topic page Impact on health.