About half of the caregivers we interviewed received support from publicly funded home care services on a regular basis. Several caregivers had experience with temporary home care support. Caregivers who didn’t have home care either had cancelled the service or felt that they didn’t need this type of support yet.
Overall, caregivers were grateful for the help, satisfied with the people that came to their homes, and happy with the care they provided. There were some exceptions when caregivers encountered someone less qualified.
Caregivers identified some specific advantages of having support from home care services. Claire says: “It’s wonderful to have caregivers around, of course because I couldn’t do without them. I absolutely need the help or I’d be completely burned out and exhausted.” Several caregivers acknowledged that they still had the care recipient at home thanks to the home care support.
New and untrained people from home care
The difficulties caregivers experienced were mostly to do with certain system issues in the provision of home care itself. The frequent change of home care staff was often problematic, for example. Val counted 48 different healthcare professionals that came to her home. Several caregivers spoke about the time and energy needed to train all the new people that came to their home. Kai, for example, said, “We never got the same person. We would always get a different nurse. So having to explain the situation twice: ‘This is my dad this is what he’s going through, this is what we do for him, this is how he likes it done.’” At the same time, it was often difficult for the care recipients to adapt to the continuous changes.
Like Ginny, several caregivers decided to either stop home care or not apply for it because they preferred to do it by themselves. Elaine said, “But I remember what it was like with my mother and I don’t want—and neither does my husband—to say ‘You have to wait until three o’clock this afternoon when the guy is coming to help you with your bath.’”
Lack of resources or time
Several caregivers felt that home care organizations did not have enough resources to meet all the needs in their community. This meant that they either didn’t receive any home care at all or had to manage with insufficient home care support and frequent cancellations at the last moment.
Ginny’s mother qualified for 45 minutes of home care services per day, but they had to wait a long time before the service was available. Ginny felt is wasn’t enough; she was worried about having to leave her mother alone. Anne’s husband has 45 minutes of care every day, but she says, “They keep coming to us and requesting that we drop the time that they’ve given him. He’s getting weaker and weaker and, to me, he’s going to need more and more help, not less and less. But they continually come every year and try and claw back any time that he already has. It’s, ‘Oh, you don’t really need this do you?’ […] but I’m appalled at that.”
Several other caregivers felt they received sufficient support and were happy with the services provided.
Live-in caregivers and other solutions
Live-in caregivers are individuals who are qualified to provide care for children, elderly persons or persons with disabilities in private homes without supervision. Both Sheni and Donovan have experiences with employing live-in caregivers who lived in their homes to support them in the day-to-day tasks.
Sheni found it scary to hire someone she didn’t know: “It’s very disappointing. People think that you can just hire a caregiver and your life’s going to be perfect now. Well, it’s not like that. You end up with issues. You still have a lot of issues to deal with, and you’re basically an employer so you have a lot of, I guess, paperwork to deal with as well and it’s difficult.” Both Sheni and Donovan found it a challenge to manage live-in caregivers as employees.
Donovan was able to hire two live-in caregivers thanks to a provincial program that provides caregivers with financial aid to arrange their own support services.
Rachel and Drew also made use of this program. Drew said, “We have a brilliant program here in BC called CSIL, and that’s really, it’s a self-directed model of care. We’re able to self-direct that funding to what we feel working with, naturally working with a public case manager what we feel is going to be the best arrangement given the circumstances. And so that’s been a great—there’s probably not a family caregiver out there who wouldn’t say the same thing that there could always be more funding.”
Even when home care works as it should, it remains a challenge to find the right care and the right support. Claire finds home care services absolutely helpful in supporting her in her role. She says, “Having outside help—absolutely could not do it without outside caregivers in the home for sure. That’s probably been the best and the most difficult part all wrapped up in one.”