Caregivers almost unanimously spoke about how busy they were keeping up with their caregiving responsibilities and their day to day lives. Although it was often difficult to keep to any sort of routine, many tried to take time for physical activities such as walking, yoga, cross country skiing, and other forms of exercise. Others took time to meditate, write in a journal, volunteer, read a book, shop, listen or make music, or paint. For several caregivers it was also important to socialize with their friends, people from support groups, or through e-mail. Hélène joined Facebook for fun and rediscovered some long lost friends who have now become an important part of her support network.
Most people accepted the fact that they needed to find time to care for themselves in order to continue providing support for their care recipient. However, most people we interviewed felt that this was a big challenge. In this page, you can read and listen to how caregivers tried to care for themselves, the difficulties they encountered, and what kind of changes they had to make.
Importance of caring for yourself
My social life is more and more and more restricted because of the change in her situation. It’s something I also do to myself because sometimes I don’t prioritize my own needs as well as I should. I tend to just keep going, going, going.
[...] If we focus, I mean, if we are fixated on the story of my daughter or whatever, I couldn't. If I only had this to think about as we say, but it's not the case. I must always keep a way out for myself, because this is what helps me. Because up until two years ago, she was going to a camp during the summer. She had a 15-day camp in the summer, and things like that. After, when they...
Having been a caregiver for so many years, I’ve learned that you got to learn to have some fun. But sometimes it’s hard, because when everybody else is having fun, you’ve got to go to the nursing home, you’ve got to take care of mom, or when [my mother and I] were living together I couldn’t just leave her alone. So, it wasn’t easy to just get up and go have some fun like everybody else.
Difficulties in caring for yourself
Lacking the time or energy to care for oneself was a major challenge for most caregivers we interviewed. Matsonia, for example, said, "I don't really have the energy to go out there and work out in a gym. And then, the rest of the time during the week, it's not like I can leave him alone while I go work out."
I’m not getting out and able to do things socially on my own, which I know I need to do, but I don’t seem to be able to work it in. I just found out about this one seniors’ group about 3-4 months ago, and I haven’t been able to do a thing about it. I’m just too busy all the time.
I love to go for my walks. I try to get a buddy to go for my walk. My sister-in-law is actually my buddy, my walking partner. We go for a walk every morning quite early because she’s still working. So I’ll get up and I’ll go for a walk with her. Then that will start my day. We keep each other motivated.
Sometimes it takes some time to find the right activity. Marc said, "But at the same time, one must take measures to look after oneself. I started taking regular walks with a friend, twice a week. But I searched; I searched because when you are depressed, you... Well, you are not happy, you become silent, you are affecting your partner, and you are affecting your friend (Marc's care recipient)."
The turning point: Insights
Many caregivers experienced a point when they realized they had to make some changes in order to continue giving care. For example, Joanne and Richard both realized that they needed to make some changes after experiencing symptoms of burnout. Rowdyneko and Sheni took time off work when they were too busy with their caregiving and felt they were close to a breakdown. Rowdyneko said, "My stress counsellor told me I had to take a leave. I really didn't want to take a leave from my job. And I still am conflicted about that, because in some ways, my job was respite from caregiving." You can read more about this in Impact on health.
What worked for caregivers
I just opened up [the pamphlet for caregivers] and the funny part was “taking care of yourself”. And that I had a problem with—what [is] “taking care of myself”? I’m not going to go to the cinema. I don’t have the money to go to a spa every weekend. And, in “taking care of yourself”, they had “take a nice hot bath”, with bubbly whatever. That helps.
My neighbour over here gave me a clock. I don’t know if you noticed it when you came in there hanging on the wall in the utility room. It’s a little square wooden clock, and all the numbers have all fallen cockeyed. Down around the bottom of the clock it says, “Who cares?” So, she gave that to me. She said, “This is you. You never get stressed out of anything.
For me, I read a lot of—I don’t know what you’d call them—spiritual books, self help books, to help me with how I feel […], like dealing with myself and my emotions and how I react to things. That’s how I dealt with it. Because you get to points where none of it makes any sense anymore. That’s really frustrating, when nothing makes sense. When you can’t get any help from the medical people, when your families don’t support you. It’s a real eye opener in life. If you just go through a normal life and nothing happens, you don’t see this. But when this stuff happens, you see all the stuff. It’s a world you didn’t want to know about. And that’s one thing I remember saying, that I did never wanted to know this side of life. You don’t know it if nothing happens to you right?
In some cases, couples who cared for someone together spoke about the importance of taking time for each other. At the same time, they said that taking time for oneself and connecting with friends were also important. Still, the caregivers valued respite time and a yearly holiday, if and whenever possible. You can read more about taking time for Travelling, holidays and respite.
The caregivers we interviewed described how changes in their own way of thinking helped them to cope with their situations. Lorna said, "I've had to learn to kind of talk to myself and not get frustrated. […] So I'm feeling pretty positive about it right now. But it bothers you, right? You've just got to try and think a different way."
We were doing joint caregiving, so we would just bounce [the difficult moments] off. Right now I find with my health, it is really hard because I’m totally drained of energy. [So], we take turns. Sometimes we just talk it over. Like today, I was really upset with what happened at the home. I came and I cried and I went a bit, “Alright!” It keeps on going on in your mind right?
[…] With the experience we had with my mom, we were able to ask the similar questions back in Holland. I, primarily, was with my mom. I was the one who was looking at the resources and whatnot, so I would say, “Okay, we have this in Canada. Do we have something parallel over there?” [By] doing the caregiving jointly, it kind of relieves the stresses on each other. If he is busy doing something, then I’ll say, “Okay, I’ll pitch in.” And when I want a break, he’ll say, “Okay, I’ll go and do it.” So, that kind of helps.
Others also found it helpful to look at the situation with some humour, sometimes described as "black humour" or as "awful but funny too".
Probably my last piece of advice for caregivers would be to keep your sense of humour—to not be afraid to laugh and enjoy life. And, not to pay attention of people who think that it’s cruel to laugh at somebody who does something weird because of a medical condition.
I find that when we are suffering, we are looking for lifelines, and this is a warning. It is testing the strength of our faith. I am answering you differently now from what I would have answered you two years ago when my aunt died. I was with her for 6 months while she was in palliative care. And I cried. I burst into tears like an old lady. I cried, it's terrible.