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
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."
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
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 was 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."
Others also found it helpful to look at the situation with some humour, sometimes described as "black humour" or as "awful but funny too".