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.
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.
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.
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.
The caregivers we interviewed also described many activities that they had to perform that go above and beyond their usual day-to-day caring.
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.
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.