The burden of caregiving on a recipient

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As caregivers, we often go through a range of adverse emotions – from stress and anxiety to fatigue and, of course, guilt for having those feelings. Today, we will have the opportunity to view caregiving from the opposite perspective and read the candid thoughts of a spousal care recipient.

Paul Lima is a freelance writer and business-writing trainer, based in Toronto. Twenty years ago, he was diagnosed with multiple sclerosis (MS). He recently started a personal blog, called Me and My MS, which documents his experiences living with a chronic illness. Below, he shares his most recent post, Chronic Illness has an Effect on a Partner, with the Caregiving Matters community.

Chronic illness has an effect on a partner

When I was first diagnosed with possible multiple sclerosis (MS), I told my partner Lyn that I wouldn’t blame her if she wanted me to leave. We were in our early 40’s and had so much life ahead of us. I simply didn’t want to be a burden on her. I also just wanted to crawl into a hole and disappear. I didn’t want to deal with my illness and couldn’t understand how anybody else would want to deal with it.

To Lyn’s credit, she figuratively slapped me silly and told me to get over myself as she wasn’t going anywhere. Probably that was exactly what I needed to hear. My exacerbation — strange sensations all over my body and fatigue —  lasted a year or so. Then things settled down, with the occasional minor exacerbation. (Okay, I don’t know that I would call the one that hit my taste buds, making everything, even a glass of water, taste like crap, a minor exacerbation, but overall I was, we were, able to get on with life.)

That is the nature of relapsing-remitting MS — it comes and goes. And it is now 20 years later… Over time, there were minor and major relapses and the current relapses is more severe.  I am dealing with severe chronic headaches that simply last 24 hours a day, 7 days a week. It’s been 2 years and counting, with no releif… And Lyn is dealing with me, or the lack of me — the part of me that is not able to pick up the slack as I melt into the couch in the evenings with limited energy.

We have a dog, Quinn, a Giant Schnauzer,  who has to be walked twice a day. When Lyn is busy I can buy her some time by walking him both times. I figure as long as I can put one foot in front of the other…. But when I get home from the afternoon walk I can’t do much more than sink into the couch. I can get up to clear the dinner dishes, but not much more than that. (Lyn is an amazing cook — so much so that the taste bud exacerbation was almost, not quite, as bad as the headaches!) .  In addition, I buy the occasional quiche or we order in food when Lyn has been particularly busy, doing the work of two, so she can take a break from cooking!

In short, chronic disease has an impact on the family. I may be sick, but my illness effects Lyn.  I do what I can, but there are just some things I am not able to do. Doing stuff takes energy and concentration, two traits I often lack. Unfortunately, she has to pick up the slack.

In addition, we don’t go out to plays or movies and seldom to dinner. I am not as social as I used to be; being social takes energy that I just don’t have. However, we have friends who drop by for a visit every couple of weeks or so.  And it is good to see people. Seeing people is something I should try to do more of, I know. At the same time, Lyn knows that she has carte blanche to go out with any of her friends at any time. I can always boil myself some pasta for dinner, or order a pizza. So we are not putting our lives on hold.

Having said that,  illness has both a physical and an emotional effect. I try not to burden Lyn with every little issue that I have. I do this for her and for me. After all, who wants to go through life with a negative attitude, complaining about every issue every day, Instead,  I play — we play — the hand we have been dealt. I am not saying it is easy. I am saying we have choices. And we choose to do what we can do.

And yes, I still feel guilty, but I work hard not to let the guilt wear me down. I try to pitch in when and where I can. And sometimes if Lyn asks me if I can do something, I find that is just what I need to motivate me to get my butt off the couch and do something other than sit there!

So Lyn, thanks for understanding — and keep on figuratively slapping me silly when I need it!

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