To be a better caregiver, I need to prioritize my health, too

Caregiver self-care is a key factor in providing long-term assistance

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by Betty Vertin |

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As a mom and caregiver to three sons with Duchenne muscular dystrophy (DMD), my focus is always on someone else, and I tend to slip lower and lower on the priority list. I’ve been thinking about this a lot lately.

Since my oldest son, Max, 17, broke his leg nearly two months ago, I’ve been caring for not one, but two nonambulatory sons. Max’s younger brother, Rowen, 14, stopped walking three years ago. Eventually, I‘ll have another son who will go off his feet as well. The last seven weeks have reminded me how physically taxing caregiving will be as the boys and I get older.

Since Max’s fall, the amount of lifting and transfers I do each day as a caregiver has doubled. Unfortunately, I hurt my back early on during those seven weeks of lifting Rowen. About a week later, I had another tweak transferring Max.

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So it’s been seven weeks of babying my back and letting my husband do as many transfers as possible, and my back is just now starting to feel better. Realizing how hard I work motivated me to look at myself and honestly ask if I was caring for myself well enough to be healthy and strong over the long haul.

The answer was no. I’m in OK shape, but I miss workouts to tend to my children’s needs. I usually get enough sleep unless the boys need me during the night.

If you can relate to this as a caregiver, you probably can also relate to the fact that I was recently overdue for a few of my annual checkups. I thought I’d already scheduled my yearly physical and was waiting for a reminder that never came. I finally called the office and realized that I’d never made the appointment. So it will be more like an 18-month checkup this year. However, I always remember to schedule an appointment for the boys.

Additionally, I’m a carrier of DMD, and as a result, have some heart issues. It’s nothing major, and I manage it with medication. Still, I’m supposed to follow up once a year with my cardiologist for imaging tests to ensure that nothing has changed. Well, guess what? I didn’t do that on time, either.

I finally did get it scheduled, and although I’ve only had imaging done and won’t see the cardiologist for a week or more, they called to say that things looked good. That’s a relief, but I never would’ve overlooked a cardiology appointment for the boys.

Finally, I have some skin tags and a few spots that probably need to be checked out by a dermatologist. This is on my radar. I know it’s important to have your skin checked for cancer. I’m in the sun all the time. A couple years ago, my husband had a spot of skin cancer removed, so I understand the importance. But somehow, when it comes to me, I forget or put things off.

Promises to myself

As I pondered the reality of my future and what it would take to be a successful caregiver, I realized that I had some work to do. Then I set out to schedule the appointments that are necessary for Mom. It’s just as important to monitor my own health as that of the boys, because they need me.

Another thing I need to do is to stop skipping the workouts. So I recently started a new strength-training program for my back. But last week, I missed every day while my husband was traveling for work.

I always want to be the best caregiver for my sons. But I must want to take care of myself for my sake, too. No more letting Mom slip down the priority list. If I’m not strong and healthy, keeping the boys as healthy and happy as possible will be hard.

Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to muscular dystrophy.


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