Caregivers’ tasks and responsibilities are broad and diverse. On this page, you will read about what it was like for people to manage all these different kinds of tasks. You can also learn about caregivers’ roles and responsibilities, the adjustments they made in their own lives, and the many tasks they took on.
Caregivers spoke about many different types of personal care activities they provided, such as feeding, toileting, washing, cutting nails, washing hair and so on. The caregivers also checked-in with the care recipient to make sure that they were feeling well and comfortable. Many caregivers were increasingly involved in household tasks such as cooking, housekeeping, washing, shopping, gardening, administration, finances and household maintenance. Many caregivers drove the care recipients to medical appointments and other places.
Experiences with providing support
Several caregivers cared for someone with mental health or cognitive problems. Sometimes, this meant the caregiver was less involved in their personal care, but helped to constantly remind the care recipient what they had to do and when.
Well my caregiving task is not a typical caregiving task. I mean, he can still function with getting things ready. My thing is being a calendar, a memory bank for him right now. […] Most of my caregiving is reminding him of things, keeping track of things, like when the kids were little. You have this going on on this day. I make sure he doesn’t miss an appointment. He still has a bit of meds. He’s still really good about looking after that. I don’t have to worry about that. It’s dealing with issues, but he’s fortunately able to deal with most of the stuff. I need to go along with appointments and things because I need to hear things, because he forgets things; he doesn’t process things. So I’m basically his memory bank, his calendar. That’s the biggest part of caregiving for him I would say. Physically, I don’t need to do anything physically for his needs. He can still look after what he needs to do physically. In regard to his caregiving and things, I don’t. I’m not doing any bathing or any of those kind of things. So, that’s basically what I am.
Caregivers had a variety of responsibilities, but were more overwhelmed by their overall workload than by any task on its own. For example, Rowdyneko said, "It has been more crisis management than caregiving. It's the same thing, I suppose, because somebody has to manage the crisis. But ironically, I mean, basically I do crisis management in my job, but managing, doing crisis management for a family member is much more stressful. Because when your job is done, your job is done. But it's never done here; you just don't have a normal life."
In general, caregivers learned to adjust to their new role and found solutions to problems. Richard, for example, had taken over cleaning the house, but explains that he felt he was not doing a great job. However, it was difficult for him to accept another solution until he realized that he was under a lot of pressure with all of the cleaning. Christiane doesn't always have enough time to clean the home before visitors arrive but said, "I don't worry about it anymore." Alyce is learning to adjust to the messiness that her husband, who has a brain injury, can create in the kitchen. She doesn't say anything anymore to avoid conflict.
Several caregivers learned new skills to help with medical care. Richard, for example, learned to do a special kind of massage, manual lymph drainage, for his wife. Lillian and Michael had to learn how to insert a feeding tube, a nasogastric tube.
It started about early 2005 when he did his dialysis, and so he was home and he did it at night for about 8 hours, but with that it meant all the supplies that he would have at the hospital were coming to us now. So about 6-8 weeks, there would be about 60-70 boxes of medical supplies and at the time we were living in a 2-storey house.
Still, some caregivers did not feel comfortable performing certain tasks for their care recipient. It was not easy for these caregivers to decide at what point their roles and responsibilities should stop.
And [homecare is] an absolute Godsend. If you have to speak to any caregivers who do not have homecare and have to look after things like, like dealing with incontinence issues, or bathing their spouse, or even trying to get them in and out of things. I mean, 2 years ago I injured my back because I was helping him. He was at the point where he could still just barely transfer out of his chair into another chair or into the car, something like that, even on and off the toilet because he was still using the toilet on his own then. And initially it was just a kind of a little help and it got to the point where it was, I was really having to try and lift him and that's when I injured my back. And I simply said "I'm not doing that anymore." Any kind of transferring is going to have to be with homecare people, and otherwise, I'm just not doing it because it's taken 2 ½ years for my back to start to feel as if it's somewhat better, not back to where it was. And it is just such a risk to caregivers because you really do keep doing things until you injure yourself.
I remember one of the last times I tried to help him was he needed to get off the toilet and he just couldn't, he couldn't stand. And so, I was helping as usual, but at one point he said "I keep telling you! I keep telling you! You've got to lift me." Well he's 185-190 lbs. How am I supposed to lift a 185-190 lb man who can't help, right? You're trying to lift that kind of dead weight, and it never crossed his mind that this was an unreasonable request to make.
They wanted us to do things like—we never got to this point okay—but when we're having this discussion about whether I can care for him at home, one of the things they're wanting is, "Well he has to go get intravenous from time to time, okay?" So when we're having this discussion about whether he can come home, "Well, he'd have to come and have intravenous". I said "Okay, so how do we do that?" "Well, you have to drive him to daycare at [the] hospital." 45 minutes! This very sick person. Then he has his intravenous. Then you drive him home, and then you drive him back later in the day because he has to have it twice. That's not going to work. How's that going to work? Take a look at this guy. Or then he sometimes has to have blood transfusions because—I'm not sure why—they think he's bleeding somewhere but they can't figure it out—well they can't do the tests to figure it out. "So, blood transfusions," I said. "Okay, so how does he get the blood transfusions if he's not admitted in hospital?" "Oh, you drive him down to daycare in [city in BC] and we give him a blood transfusion for 4-5 hours, depending how many units he needs, and then you take him home." And I'm like "Oh yeah, that's going to work…" So then one doctor says to me, "Well, maybe you need to move to [city in BC]." I said "Sure. I'll get right on it." And that's one of the issues of living here.
And then in that week she basically, not even one, it took more than one person to help her and so that week I did the toughest thing I’ve had to do, one of the toughest things. I went to the hospital and I said to them “Look, I just, I can’t fight anymore.
The people we interviewed mentioned that there are some responsibilities that take up a lot of their time, but are hard to describe. These including things like managing the day-to-day activities, problem solving, providing emotional support, and just being present.
There the kind of things that you often don't think of until somebody says something, because you—actually this is a point I didn't make, and it's perhaps one of the ways in which I have been most involved with the caregiving, and that is problem-solving. And that's a big issue, because the person needing the care is constantly running into problems trying to do something. And so, you're always sort of racking your brain trying to figure out, well how else can we make this work? What can we do, how can we adapt this, what could I buy? What different kind of water bottle might he be able to use? Because he has no use of one arm and he can only barely with a lot of effort force a bottle or something into a hand that just kind of sits there. And the other hand is losing a lot of strength, so there are a lot of things that he can't do. And opening jars and just some of the water bottles that you buy all over the place—the reusable water bottles—have systems of opening or shutting them that may be fine for the average person, but for somebody with very little use of their hands and strength, it just doesn't work. And so you're constantly out there looking at what's out there trying to see if there's something that looks like it might fit the bill.
So then I passed that on to other people. So there's a lot of that kind of "How do you, what do you do, how do you do this?" You just sort of suddenly get flummoxed; you hit a certain point where the logical thing that everybody always does in that circumstance isn't working, and you kind of hit a wall. You can't figure out how you're going to do it. And then you start asking people, and some people often came up with it before. But that's one of the things that I have done a lot of, is just trying to do the problem-solving and trying to come up with things. When he used to be in a scooter, he would have a bag hanging from the front handlebars of the scooter and he could keep all sorts of things in it. When he progressed to a wheelchair, there's nothing in front to hang anything from. There's something in the back but he can't reach it, and you can put a couple of things on the side, but he can't really put one on one side because the joystick moves in and out. And the other side, you can only put so much because he's still got to get through doorways and things, and if you start putting too much everything gets caught.
So I'm constantly trying to come up with ways of putting something that he can attach to the wheelchair somehow, somewhere, still be able to reach it and use it, but it not get caught in things. So, it's that kind of thing that you spend a lot of time just trying to figure out how to do.
The caregivers we interviewed also described many activities that they had to perform that go above and beyond their usual day-to-day caring.
But as she gets less autonomous and more fragile that changes, where there’s a lot more demands on me every day concretely. Just the managing of all the appointments and the doctors and the follow-ups, and there’s a lot.
I’ve had, I had a nurse come in one time when Bill cracked his spine, sorry his neck. He wore a collar and couldn’t do very much—we had to buy him extra large shirts because they had to go over. He needed a shave because the beard would irritate his chin, so I had one guy shave him. I had a nurse bath him, because of my spine I was afraid what if he fell on me then I’d be useless to him.
Daphne did not only get involved with her father's care, she also tried to keep her parent's farm going.
Rowdyneko said: "It's coping with the everyday stuff I can do, it's when additional stuff gets thrown in ... like breaking my tooth and having to do the dentist stuff, a heater stopping working and then I have to deal with that. […] It's those kind of things that tip me over, because I just don't have anything left after doing the day-to-day caregiving stuff."
Some caregivers also acted as translators for their care recipients. For instance, Madhu's mother was unable to speak English and Mrs. Smiths' mother lost her ability to speak English. In both cases it meant that the caregivers had to be more present to assist with translation.
Other caregivers said things like "it's endless", "the tasks are never done", "I am constantly looking for solutions", "sometimes I can't go away", "always ready for a call", "I have to be alert all the time". For example, Kai said, "I was at home basically 24 [hours]. I know it sounds like an exaggeration, but it feels like it was 24/7."
Changes over time
When someone has a chronic physical illness, their needs and level of independence will often change over time, and caregivers have to adapt as these changes occur. At first, caregivers' roles usually involve simple tasks like helping with day-to-day activities. However, these tasks can accumulate slowly and become more complicated over time. Equally, they can change suddenly during a crisis or after a turning point in the care recipient's situation.
And I took a sleeping pill. During the night, his breathing woke me up because he was still like this. And then, when he is in this situation, me, I am not supposed to lift anything heavy. I have a problem with my spine. So I put my two feet before his feet, I put my hands on his knees, and then I tell him, “Lift you bum”. Then I push him a little.
A few months ago there was a difficult 2-month period during which he had to make a decision. But to make that decision, we had to consult with three plastic surgeons and radiotherapy surgeons. He had to have a scan, x-rays and an MRI and then, after the three specialists had a teleconference, he had to return to each of them, with the insecurity and a... how should I say?
These experiences highlight some of the key challenges in the daily lives of caregivers. Caregivers need to adapt over time to accommodate new or changing medical problems. In other topic pages, caregivers share their feelings (both positive and negative) about their roles—see What it is like to be a caregiver. There is a separate topic page on what it was like for caregivers to find the right resources, support, and access to care—something we refer to as "Navigating the system". If you like to read more about changes caregivers experienced over time, please see the page When care changes over time.