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.
For Shoshana, caregiving is more about being a memory bank and a daily calendar.
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.
During a week-long training session, Kai and his mother learned to run the dialysis machine overnight.
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 […]
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.
Marlyn had to find a balance between the physical care her husband required and her own limits in performing these kinds of tasks.
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 […]
At times, Rowdyneko was asked to do medical tasks that she did not feel comfortable doing.
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 […]
The toughest thing that Fernanda did was tell the doctors that she wasn’t able to care for her mother anymore at home.
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, […]
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.
Marlyn realises, during the interview, that problem solving is a big part of caregiving.
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, […]
The caregivers we interviewed also described many activities that they had to perform that go above and beyond their usual day-to-day caring.
While each task is reasonable on its own, it’s the accumulation of many small tasks that Joanne finds challenging.
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. It just it takes a lot of time and none of […]
When Bill had an accident, Alyce slept for two weeks on the floor beside the couch to make sure he was ok.
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 […]
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.
One weekend, Christiane had to move her husband in bed. And with her back problem, she wonders what might happen if she had to do it again.
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 […]
Marc’s friend is only able to speak with his eyes. Marc describes how this made his hospital stay more complicated.
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 […]
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.
Review date: 2019-09