Age at interview
Age at start of caregiving activities

David is 68 years old and lives with his wife and one of his two grown children. David’s wife was diagnosed with MS (multiple sclerosis) 12 years ago. David’s wife needs regular support for her daily living, although she is able to stay home alone for certain periods of time.  David took the option of early retirement 10 years ago but he then decided to return to the workforce in a self-employed arrangement sometime after that. Currently he is considering reducing his work hours in order to better care for his wife.

David and his wife experienced a hectic period in their lives when they were trying to find the exact diagnosis to explain her symptoms. Shortly after the MS diagnosis, David’s wife started a clinical trial for a new treatment for a period of two years. At that time David’s wife was still able to drive. However, very soon after the start of the treatment she needed somebody to drive her to her appointments. Since then, it has been a long downwards spiral with her illness with challenges at almost every step. Along the way, David was introduced to caregiving and his tasks increased substantially. For David “the caregiving did not start as being a caregiver but as becoming a caregiver”. It is not a job that he chose to apply for and not one for which he had been trained. In fact, after 12 years of caregiving, David feels that he still has not mastered well enough certain aspects of his caregiving role.

David retired early to provide better care for his wife; his work and his regular activities were becoming too much. Having a part-time, self-employed position today is still not ideal, as David is constantly trying to find the right balance between his professional life, his work as a caregiver and his painting. Although David’s physical health has not been notably affected by the situation, he has been depressed for several years and is currently taking medication for that. 

David’s grown daughter lives with them and helps whenever she can. His son, who lives further away, also helps when he is able to. David feels that he is well supported by their friends who remain in contact on a regular basis and respond well to his requests. In addition, he has had a very good experience with the services offered by his local community health centre and his wife’s physician. He is appreciative of medical professionals who acknowledge him as a caregiver because the darker side of his experience with  professionals is that sometimes he is made to feel like an invisible person, barely tolerated, and hardly recognized. This has led to some hostile encounters with healthcare professionals. David wishes there was a better support system around to enable him to improve his caregiving skills. He would also like to be able to meet other people in similar situations, such as through a caregivers support group, but as yet he has not found such a group in his area.

In spite of all this, cooking and eating good food with his wife is something David greatly enjoys. He has also kept alive his love for painting. David explains that when he paints he is able to focus his mind away from his caregiving while at the same time it feeds and recharges his soul. This enables him to continue with all of his responsibilities, in what he describes as the never-ending process of learning to care

Text transcripts

We were at a hospital and I was assisting—I was sitting-in in a meeting with a nurse—and I had a cup of coffee for myself and my wife in one hand and I had something else in another hand and I got up to help my wife get up from the chair and told my wife, “I can’t grab your hand because my hands are full.” And the helping person who was there and the medical person said to me, “Ah you men, you cannot multitask as we do.” And I didn’t really appreciate that. Considering that the night before I had been up maybe a couple of times because my wife had fallen. And I just thought it was totally… more

A life lesson? Good heavens. I don’t know it yet. I’m sure there are some life lessons there but… I guess I’m working on my patience. I have, I have good patience for certain things, like for example, if I’m doing a painting and I need to spend a whole bunch of hours drawing details or painting details, I can do that. But, when getting somebody dressed or taking care of somebody physically, I’m not always good at it. So, I guess that’s part of a lesson that I need to learn. That sounds kind of mundane but it’s the best I can come up with. I think the life lessons will come up later, but it… more

Just a sensitivity to the caregivers, to acknowledge them, and maybe provide also some services. Like for example, some support groups. I can’t believe that nobody has thought of this. Support groups for caregivers in a hospital setting. You put a social work student, or I shouldn’t say a student because it still requires skills, somebody trained in group work.

And maybe the whole issue of support groups, I keep going to that, it just seems to me so obvious and yet so lacking.

Have you been looking for support groups? Have you been connected with a support group?

To… more

Right now I’m semi-retired. I’m a social worker by profession and I’m working part-time. I enjoy my work but I have to be careful that it’s not too much. I’m in the process basically of […] a transitional period, going back from vacation to my normal life. So, I have to kind of recalibrate that [transition] between professional life and caregiver. I’m also a painter and that kind of feeds the soul in a sense. So, I have to kind of juggle with all those parts. The challenge is that you don’t apply for the job of a caregiver. You do it because you want to. It’s sort of thrust upon you and… more