The people we interviewed were in all kinds of different stages of their lives and careers, and caregiving often had a major impact on their working situations and professional aspirations. In addition, many of the people we interviewed had been caregivers for more than 10 years. During this time, their working arrangements changed frequently. Several caregivers were not working at the time of the interview and others had previously lived through periods when they were unable to work. For many, the demands of caregiving led to changes in their work situation, including reduced hours, unemployment, sick leave, or unpaid leave from work.
Almost half of the caregivers we interviewed were either working full-time or part-time. Some of the people we spoke to chose to work part-time, in order to combine their work and caregiving responsibilities.
Almost half of the people we spoke to were retired. Several of these people retired early so as to continue caring for their care recipient. Some also retired because of personal health reasons associated with the burden of caregiving.
Some of the people we interviewed started caregiving before the age of 25. Being a caregiver at a young age affected their choices in life. For example, Rachel did not choose the university she would have liked because it was too far away from home, where she was needed. Snoopey is currently caring for her mother and is not working or at school. Kai is now living with his sister and cares for her children. He is also very active in the youth caregiving group in his region. At the time he was caring for his father, he was fired from his work.
Time for care
It can be challenging to combine caregiving and work. Fernanda, who has to leave work early to bring her mother for dialysis treatment, said it is really hard to leave early from work almost every day, year after year.
When the phone rang at work, Joseph would always think for a moment that it might be his wife calling because she needed help.
Some situations required that the caregivers remain home and take leave from work. For example, Rowdyneko took a leave to be able to care for her husband at home. Still she feels conflicted about this decision because, in some ways, her job was a respite from caregiving. Val had a similar experience and returned back to her work after a leave of absence. She said, “Being with a critically ill person all day really takes a lot out of you.”
Support from work
Caregivers who continued to work experienced different levels of support from their employers and colleagues. Good support, flexibility, and understanding from their employers were very important to them.
Not everybody felt supported at work, which added to the stress of their situation. Anne, a caregiver for her husband, was absent from her work to look after her daughter who had an accident. She said, “They [her employers] were understanding at first, but then they started implying to me that ‘maybe I should leave’ kind of thing. But my daughter had to go stay in this children’s hospital for a while too, and I spent a lot of time there. And when she came home, there was a lot to do with her too.” Hélène described her colleagues’ reaction: “The hardest part was, especially with work or colleagues, is ‘It’s not you that’s sick; it’s him. What’s your problem?’ And every time I would hear that, I don’t know, I’m just as sick in a way because I’m very, very close to my husband and it affects me just the same. But no, not just the same. I will never know. I will never be in his shoes, but it’s just as difficult.”
Effect on professional life
In some cases, the caregivers felt that they already had a natural motivation to be a caregiver. Drew, for example, became a caregiver when he was still very young. He said, “I continue to work with other family caregivers, and I continue to work with other seniors, for example, around home and community-based living. […] I guess I’m just naturally predisposed somewhat to that role of a caregiver.”
Other caregivers became more professionally involved in caregiving issues once they had lived their caregiving experience. Several caregivers became involved in their local caregivers’ support groups. Some caregivers also became active advocates for caregivers more generally in society.