Impact on professional life and career
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.
Christine was so caught-up in caring for her mother that she never resolved her employment situation.
I was not expecting to lose my job, and certainly we were expecting my father eventually to die. So, I think his death and losing a job at the same time in my life was very hard on me but I had to push it behind me in my head […]
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.
Joanne needs flexible hours to check-in on her mother, which affects her career choices.
I work 2 different jobs; one is 3 days a week and one is on the weekends. It averages out to 4 days a week. Just last year there was the possibility of another job that was 5 days a week, but it would be very fixed hours. That was […]
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.
After taking sick leave, Joseph decided to request early retirement at work.
It was in 2007, January 2007. And so, I was working two days per week, and was on sick leave three days per week. That worked for me and in that context, I asked for pre-retirement. It was about 32 years… I was in my thirty-second year of work at the hospital. So, at that moment, I made a request for pre-retirement, which according to the documents was like one year. So you make you request, and next there is a delay. Then they accept, then it is for a year, then after that you can take your retirement.
And so, it was about February that I made my request, and in March I received a response that said, “Okay, listen. We accept your request… ” given that, at that time, I was 55 years old. “You can take your retirement. You don’t have to follow the whole process, and if you want, you could take your retirement on December 10, 2007.” “Ah!” I said, “Well, that better than I thought.” So, I was… I no longer had the desire to work, I no longer had the motivation… The work was no longer motivating me and personally I was like lost and searching for myself. And, I was no longer well.
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.
Kai started working to help out financially, but was so distracted by the situation at home that he was eventually fired.
So moving forward, probably about the summer of 2007, I was at a point where I needed a job. So, I got a job doing barista—I was a barista—and I also got a job as sales worker, retail. And it was good. It got me out of the house and […]
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.
It is difficult to work while caring for someone at home. Sheni dealt with situations that she felt most people never have to deal with.
So I don’t know, it was just, it was a problem in a lot of ways. Like, I just found it really difficult to manage all this stuff. I had so many times where people would call me. One time—my husband takes the mobility bus to go to his day […]
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.”
Hélène used up all her vacation days to care for her husband; she ended up taking 5 years worth in advance.
So he was in the hospital and caught C. difficile. So that was the first four months of being a caregiver. So of course I could not work. I used up my vacation, my sick leave, my anything leave, and then went onto unemployment—on sick leave for me at that […]
At times, Shayna’s caregiving responsibilities affected her performance at work.
One of the, one of the incidents that happened that made me really realize how much energy is lost and how you need those supports was I had a very important placement conference for a special needs child, and I took a lot of care in what I was going […]
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.
When her son started radiation therapy for his brain tumour, Sheni had to take time off work. Unfortunately, her manager was not very understanding.
He ended up going for 6 weeks of radiation treatments—every day we went down. I had to take time off work because I basically had a breakdown and I just—I couldn’t function anymore. And I had to… I just, I took this time off and I drove him down every […]
Joseph received a lot of support from his employer who helped him sort out the right arrangements for him.
Yes, oh yes! That’s it, it was… I stopped working. Well, I worked part time. The organization that I worked for was really receptive, very understanding. My boss was super helpful in that. I don’t know what she thought of it, but she took it appropriately. She offered me the necessary support, the employee assistance program was there. Given that this is an organization that deals with psychiatry, well theoretically, they should be understanding, but that doesn’t mean that all the administrators are. But there are predispositions to that. And so, I received great support from my place of work.
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.”
Fernanda asks employers to put themselves in the caregivers’ shoes; it is really hard to balance care and work.
Please understand that, even though your life, maybe that you’ve never had to take care of anybody, that it is extremely hard to take care of somebody and have a job. I’m not asking that employers say, “Okay, you’ve got to take care of somebody, so you can have all […]
If you would like to read more about people’s experiences with lost income and privately paid care, please see the topic page Financial Impact.
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.
Kai became involved in a video project to raise awareness for youth caregiving, and helped start a youth support group.
I think the biggest thing that I got out of it initially was—well in any youth caregiver experience you do feel that you’re isolated and that you’re the only person doing this—but it was very fascinating to me to know that there were several other youth. They were younger than […]
Michael started teaching a course on disability and injury. This was an enriching experience for him as he brought his caregiving experiences to the classroom and to students.
So another side of this—what is a joy—but professionally it’s completely changed my life. So I’m an academic and for the first 15 years, 14 years of Oliver’s life, there was no way that I was going to confuse my research and interests with disability. Partly because I felt that […]
Review date: 2019-09