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.
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 because my mother was becoming more and more in need of help. So I was in mourning in a way, and also becoming more and more of a caregiver. That gave me a sense of, like I knew what I was doing. There was a focus, a sense of knowing the situation. I’m taking care of mom’s house and I’m helping mom. So, I knew I could deal with that. […] Something concrete, whereas my father’s illness and his death was something I had to learn to accept or live with. I had never lost a parent before. I had never… and the way I lost my job was… I was like stabbed in the back. It was one of those bad situations, and that was very frustrating to me. So instead of maybe really dealing with those 2 things—the loss of a job and my father&’s death—taking care of a house and my mom was something—or she was appreciating it. […] It was concrete and I could get, I could feel pride doing it. I was helping her remain in her home and I felt pride in doing it.
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.
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 a position, that particular position I was really interested in professionally, but I wouldn’t go for it because it was 5 days a week and because it was rigid hours.
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.
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.
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 it allowed me to have a little financial security. And it was very interesting at this conference I just attended how most youth caregivers suffer from presentism.
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.
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.
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.”
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 point because you have to have a reason; they won’t give it to you just because you’re caring for somebody. You don’t get anything.
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 to say, how I was going to present, how I looked because I knew how I presented this case would have a tremendous effect on this child that I was working with and his placement. As luck would have it, the adaptable transit, came to pick up my husband for work. And the guys were always very nice and what happened that day I’m not sure, but as they picked him up on the lift, a fuse blew in the wheelchair, and the driver knocked on the door and told me he was not allowed to deal with it and I had to come out and change the fuse on the wheelchair, which I did and I became full of grease and dirt, had to change, became late to this very important professional interview. I lost my case for this kid and I felt terrible about it. And it just really reminded me how the systems impact on each other. I don’t know what would have happened if the incident with the wheelchair hadn’t happened, or if the driver had dealt with it himself as they always had in the past, and I had showed up on time and been in a different mental state and so on. I often think about it when I think about how an illness is not just for your little house, how it affects others. If you have a job, if you work, it affects—the ripples of it are tremendous.
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.
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 day and he went for the radiation treatments. And we dealt with all that.
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.”
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 this time off.” No. I’ve never been like that. Whatever time I’ve had off, I’ve worked it in.
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.
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.
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 was self-interest and partly because I felt that I had other things that were really more interesting to me.