Home care and live-in caregivers

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.

 

Home care and live-in caregivers

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No, they didn’t explain anything like that. Of course, by the time you get to that point you’ve been doing everything. So, there wasn’t much that they had to tell me. The relationships with the caregivers themselves has been fantastic. The caregivers are really wonderful people, and with the odd exception, we have just had amazing people. I am so grateful to them because they’re not only doing things that I simply couldn’t do—couldn’t be able, couldn’t bring myself to do with him—but they are so cheerful and fun and funny, and I’m hearing laughing and jokes and all that going on in the room with them when they’re here. And they have conversations with him about sports things, what was happening in some game last night or whatever. Or they’ll be telling stories or just making jokes.

They are phenomenal. I can’t say enough good about the people that they have in the system. Every now and then you get a jerk, but by and large they are so much better than I thought they would be. And I’m just eternally grateful, not only for the system, but for the people in it.

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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.

Home care and live-in caregivers

Well, information sources, I had many… I had help with those things, the… rightly from the CLSC, because I had someone who came, and who dropped in. Even sending me things, because I had things made… I noticed one time that she had fallen and she couldn’t bring herself to get back up. I said, “Ah!

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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.

Home care and live-in caregivers

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Transcript

She had someone come in twice a week to help her with a bath. And the only reason she got the twice a week is because she’s incontinent. Because otherwise it’s once a week. Now, that’s fine. There was the cleaning person. There was someone, a companion, for about two hours a week so the caregiver can rest… I remember, my mother—I think there were two or three different companions that came because they could never always guarantee it would be the same person, which is ridiculous because when you let someone into your home and you want them to interact with, say your mother, if she keeps having to meet a stranger, especially if she’s an older person, it doesn’t really work, and there’s not always a good connection. And there was this one woman that came that was horrible. But I was so out of it I just saw this woman would kind of toss her cigarette butt outside the front door and walk in and kind of made herself at home right away and really was… but I was so out of it I just said, “Well here’s my mother. This is the caregiver. I’m taking a nap.” And I went upstairs and I thought, “I don’t care if she rips off all the silver in the house,” or if—not that she’d tie up my mother and, like, steal her jewels, but I was at that point. I was so frustrated and out of it. It was just like, “Here’s the caregiver.” Like, “I’m taking my two hours that this is what this is all about.” And well, it turned out that she wasn’t such a great woman. She didn’t steal anything, but my mother was not very impressed by her.

Yeah, we got that, a two-hour respite care. That’s it. Now, the difficulty with that was that I had to be there when the cleaning woman would show up, and when the care respite woman would show up, because my mother could not go up and down steps alone. And our dog who is harmless, but is afraid of everything—so she barks because she’s afraid and is a medium size—so most people are afraid of her when they first, they don’t know her or meet her, and I noticed a lot of these people from the CLSC are afraid of dogs. So, she would have to be put in another room. Well, my mother, who is very fragile, could not wrestle with the dog and put her in a room, or go down and answer the door on her own. So, in other words, I would have to be there all the time.

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Home care and live-in caregivers

I think there was lots that could have been done when my mother was living with me, but I didn’t know about the supports or it took so long to get them. I remember making an appointment for someone to come to my house, and to get the caregiver to come to relieve me even when I was going to work, and so she came and she did some tests with my mom.

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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.’”

Home care and live-in caregivers

So one of them, one of the nurses tightened it, and then when they came the second time, this new nurse was—I thought that she was in a rush. And she ripped, I’m not saying that she ripped it, but she was very quickly, quick to take the bandage off and she ripped skin off.

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Home care and live-in caregivers

And one really bad time was when mom was well into dying […] Now maybe she was 25, but she wasn’t much older than that, and she was the social worker and she was the grief counsellor.

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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.

 

Home care and live-in caregivers

No, the only problem we have with homecare is when somebody can’t come, like either they’re suddenly sick or they’re on holidays, and somebody else has been scheduled in their place. Sometimes, the coordinators that are supposed to be scheduling people don’t get somebody scheduled in their place, so nobody shows up. Or sometimes you’ll get a call last minute saying “We don’t have anybody to come,” and sometimes that’s not a big problem if it means [my husband] has to miss his nap in the afternoon, that’s not the end of the world. But when they phone you at 9 at night to say “we don’t have anybody to come at 10:30 tonight to put you into bed,” well, that is a major problem because it means that [my husband] would have to sit up all night in the basement in his chair, right?

How did you solve those situations?

Well that the one time, they simply couldn’t find anybody, because we really battle them when they phone and say that, and we spell it out to them as to what it means. Normally, they try harder and they can finally find somebody. But one time—well probably more than one time, a couple of times—one time, we had to ask a neighbour, our next-door neighbour, if he could come over and help get [my husband] into bed. Another time, I managed to do it after he got the lift system, which means I don’t have to do the lifting part—of course I can’t really remember how to properly put the sling on him and sometimes it ends up kind of weird, but [my husband is] pretty good at knowing how it’s supposed to go. So between he and I, we sort of fumbled our way through getting the sling on him, and then the lift does the rest getting him onto the bed. I mean, he couldn’t do, he didn’t brush his teeth or do the rest of what he might normally do, but he at least got into bed. But that’s always a worry when I go away—that he’ll get a call like that. And the worst case scenario would be if he had to sit up all night. That would be extremely uncomfortable. So that’s the weak link in the homecare chain. Otherwise, it’s an absolutely incredibly good system.

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Home care and live-in caregivers

I ended up contacting the Minister of Health, and also [name] who is the Progressive Conservative Leader Member of Parliament for [name village in MB], and also [name] who is the healthcare critic for parliament.

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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.

Home care and live-in caregivers

Yeah, the live-in caregiver was really good having him around because he hung out with my husband and they kind of… it was entertainment and plus it was helpful because he would make meals and he would do some laundry… and […] if I was at work and I needed to know what was going on, then I could phone him because if I phone—like, first of all, my husband can’t, like he loses things left right a

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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.

Home care and live-in caregivers

Way back when I worked, I was supervising most of my work life and I did well. I could supervise. And I have difficulty now supervising the 2 workers that we’ve got. I just find it quite difficult. Part of the reason is because we are with them all the time. When you are at work, you are at work and you’re dealing with people for 8 hours a day or whatever.

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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.”

Review date
2019-09

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