Susan

Susan
Age at interview
58
Age at start of caregiving activities
45

Susan (58 years old) lives together with her husband, and has looked after her parents over several years. Susan’s parents lived in BC and needed increasing levels of care as they were dealing with different medical problems. After Susan’s father died, Susan’s mother decided to move to an independent living retirement community in the Maritimes, five minutes away from her daughter. Susan has worked as a provincial director of home care but took early retirement due to her own medical condition.

Susan’s caregiving activities started when she was 45 years old. Her parents, who were living 3000 miles away at the time, were dealing with multiple medical problems. Susan’s involvement started with increasingly frequent phone calls, however, she found that there were moments when she needed to go to them as they could not be resolved by phone. Susan found herself constantly deciding about whether or not and when to visit her parents or if she should sit and wait. She made frequent visits (35) in this 15 year period. Susan, who was working at that time, managed to combine the visits with her holidays, however, this meant that she did not really have holidays to recuperate but instead continued taking on more and more caregiving responsibilities.

Susan later took early retirement due to her own medical condition. In a strange way, she felt that this freed her up to spend more time on the care for her parents and with respect to the caregiving, it all worked out well. Eventually, six years ago, Susan’s father passed away and her mother decided to move to the Maritimes to an independent living retirement community to be closer to her daughter. Susan’s caregiver’s tasks are mainly to socialize with her mother, help with grocery shopping and support her mother in dealing with the medical system. Susan’s mother likes to be as independent as possible and Susan supports her in that decision by trying to fill in when her mother is unable to do things on her own. Susan says that sometimes there is a fine line between when to decide to get directly involved and when to remain on the encouraging side. To continue maintaining this fine balance is one of her bigger challenges.

In the time that Susan’s father was still alive and her parents were living in BC, Susan consciously chose not to be in contact with the healthcare professionals but to keep informed through communications with her parents. This decision was in line with the thought of supporting them in their independence although she found it sometimes difficult to get the medical information she needed this way. Susan says that if she would have to redo this period again she would probably be more proactive in contacting healthcare professionals directly.

Susan appreciates the support she receives from her friends. She is able to discuss issues about caregiving with her friends and they try to provide her with support and advice. Susan feels her friends are very tolerant with her, even when she has not been able to remain in contact with them as much as she would like. In fact, this is something Susan would like to give as advice to friends and family: sometimes caregivers are consumed with many responsibilities and, therefore, unable to have as frequent contact as usual with their friends. In those and other times, it is greatly appreciated when friends are able to keep an open mind and have a tolerant and supportive attitude towards the caregiver.

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And I think people sometimes just leap into it. And I think probably I’m a good example of that. I just, I was like Boing; once I got the trigger, once the trigger happened, once my father would say, “I miss you,” which was my trigger. I knew that he meant “could you come on out and help?” I mean, it was code for “Could you come on out?” So, I would, as soon as he said that, I would say, “Well, I’ll get back to you and see if I can get out there,” in the next week or two or whatever it was. And so, I think you need to not just react, you need to be planful about this sort of thing.

To be a proactive and planned as you can be […] to reduce the reactive component. Because I think particularly daughters are inclined to just go do it, go take care of it. And I think, taking a moment to think about what the best for everyone involved is probably my advice. That running out or running to do—doing it all—is not always the best approach.

It’s kind of to take a step back and to first.

Deep breath, think it through, and try to figure out what’s best for everyone in the situation. And to engage if—I was fortunate in the sense that I understood the system, so I was able to figure out if my parents were eligible for homecare and because of the policies out there one needed personal care in order to get assistance. They didn’t require personal care assistance for the majority of the time they were there until they moved into supportive housing. So I knew to engage the right services. Well, I would encourage people to find out what services can they engage? What services are available to help the recipient and how can they work their way into that as opposed to taking over for that, but rather be a part of a larger, wider, supportive system for their parent or whoever it is.

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All of the continuum of care, there are caregivers involved. And I think that caregiving is noticeably absent from policy in all the sectors. So, I would hope that there would be influence from researchers. And once again, we’re very fortunate in this province because we do have people who do research on caregiving and they’re also involved in the province; they actually have an opportunity to influence policymaking, but I would hope that happens in all jurisdictions. Also, I think there’s a noticeable absence of caregiver… appreciation of caregivers in employment; not government policy but employment policy, both private and public sector. If somebody has a child who has got mumps or something—some illness—people don’t think twice of, well, they can go home from work and look after the child or go home and pick the child up from school if they’re sick, whatever that case may be. But there isn’t the same appreciation of that for the elder care that’s involved for many people in the employment roles of… well all across Canada. As our parents age and as our caregiving responsibilities increase, there’s an absolute need for employers to be sensitive to that, and to build in employment policies that enable people to… I’m aware of one organization that gives people—it’s probably a health district—that gives people—I forget the number of days—like three days to go and set up services for the person for whom they’re caregiving, whether it’s a spouse or an elderly parent. Well, we all know that that’s not going to do the trick. Three days is not going to touch it. So there needs to be more appreciation of how long it does take to get things in place. And even with things in place, there still needs to be an increased involvement of the caregiver, probably in the life of that dependent person. So, I don’t think there are adequate policies in place by almost any employer.

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I think probably a combination. I think when I have felt the need to receive assistance to get information, I’ve received it out west during acute phases. And I think here, because I’m in my own environment and because I’m well versed in caregiving. I think I haven’t asked for help, except for help or advice amongst my friends who are also professionals in healthcare. So, we always help each other on how to best assist our aging mothers usually.

But there is, in this province, a Centre on Aging that actually has a caregiving library and sometimes caregiving modules and DVDs. So, there is actually a strong resource of caregiving information here.

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It probably did. It’s a very good question. I think by nature I was a helper, and so it was very difficult for me to receive assistance when I required it for medical reasons. But when I received it, I realized how important it was and I think it probably enhanced my understanding of how important it is to give. When you can, you ought to give to others who are in similar circumstances who are requiring help. Because the best thing you can have in your life is actually relationships of reciprocity, like if you have reciprocal relationships. So, you may need help this year so I can help you. Well 5 years from now maybe I’m the one who needs help. You feel more comfortable to give and take, I think, when there is that relationship. In a family with a mother and child that’s easy. Well there’s lots of reason to want to give back to your mother. She’s cared for you for many years, so you’re reciprocating. Well, I think you can expand that to friends as well. Particularly—we have a mobile society—many of us are going to be aging and we’re going to have our friends; we’re not going to have the generation below to help each other out. But we’re all going to need help at some point. And so helping each other as we go through life, I think, is a really nice way to set the path, set the road.

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I think also the word caregiver is sometimes difficult for people to hear so I’m not sure that that’s always the best word to use. I mean professionally, I know that’s what a large group of people—whether it’s a little bit or a lot of caregiving, they fall into this range. But for me, I think most of it is just being a daughter. There’s a caregiving element to it, but mostly it’s the responsibilities of a child, an adult child.