3 signs that I need self-care as a caregiver

Columnist Betty Vertin has learned to see the warnings when she needs a break

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by Betty Vertin |

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I’m a caregiver. Most often, caregiving blesses me more than it does anyone else. There are times, however, when I need time away from caregiving to recharge.

In my opinion, moms of children with special needs reach another level of giving. Whether the needs are caused by Duchenne muscular dystrophy (DMD) — the disease three of my sons are living with — or something else, we meet their needs. Sometimes, however, we meet those needs at our own expense.

I know that when my kids need me extra, I give extra, but then I don’t work out, I don’t sleep, and my eating habits go down the drain. The more extra care I give, the more run-down I get till I eventually reach a point that looks like burnout.

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Giving that much for too long can sneak up on me. Sometimes I’m exhausted before I have a chance for self-care. I know I shouldn’t admit it, but self-care takes extra energy, and sometimes I don’t have any left.

I’ve been caregiving for my three sons with DMD for 11 years, and I’m getting better at recognizing when I need a break. I’m thankful for that because my sons are getting older. As that happens, they need more help, which means more from Mom.

Recognizing when I need to take some time away for self-care before reaching my breaking point is vital to my perseverance as a caregiver and my mental health as a mom.

There are three things that I start to do when I’m getting worn out. I know I need to recharge my caregiver battery anytime I begin to do the following:

1. Try to control everything.

I’ve learned much about myself since I discovered my sons had DMD. One of the most important things I’ve learned is that I’m not in control. My faith life comes into play here. I genuinely believe I’m not in control. For years, I worked and worked and did everything in my power to slow disease progression and keep my boys walking. Then, no matter what I did, Rowen, my middle son with DMD, broke his leg and stopped walking. It was one of the hardest lessons to learn, but I finally realized I was not in control, but was exhausting myself trying to get there.

So the first sign that I need some self-care is when I start trying to control everything.

2. Keep score with my husband, Jason.

I keep track of how much I’m doing. I track how much I think my husband is doing. And when I don’t think they add up to fair, I start to be short, aka mean, to my husband, and that trickles to the kids.

I admit that it’s not fair to Jason, and to be honest, I think I started looking for a fight because I’m tired and crabby. It’s not good for me because l get in my head and overanalyze, and then I’m not present.

3. Tell the boys how much I’m doing for them.

That sounds awful and is hard to admit, and I want to make sure you know it’s when I’ve been helping and no one says thank you, and it feels like they order me around.

I want to help them; they need it and deserve it, regardless of whether they say thank you. But I’m human and want my sons to ask me nicely. The more burned out I get, the more it bothers me. I want to be more patient than that, and I always want to remember how incredibly hard it must be to depend on someone else for the things they need help with. When I can’t do that very well, I need to step back and catch my breath.

When I realize I’m acting as described above, it signals me to take a break. It could be as big as a weekend away or as little as a few minutes alone in my garden. And to keep myself from burning out too often, I try my best to exercise, schedule time alone, and eat right. Those are little forms of self-care necessary to keep up the day-to-day of caring for my family.


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.

Comments

stuart clontz avatar

stuart clontz

thank you for this. My 26 y/o son was diagnosed with a rare mutation HSPB 8 at age 20 and is now in a wheelchair. It is hard not knowing about the future but faith life is important to give things over. Daily struggles include self independence and frankly, letting go sometimes.

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Betty Vertin avatar

Betty Vertin

Thank you for your comment, Stuart. It is day by day sometimes, but we just keep working at it.

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Candice avatar

Candice

Thank you for this article and for your honesty as a mama of boys with DMD. My only son was diagnosed a little over a year ago. He's 6 years old. We haven't entered into the really hard stuff yet, but sometimes just stomaching our reality is enough for me to have a hard day. I've felt everything you've described, so I'm thankful to know I'm not the only mama who struggles with these things. It's hard to balance being a loving and selfless caregiver, knowing my son can't help his condition and the behaviors that come with it, while also trying to remain patient and not allowing myself to get resentful when I feel like I'm taking care of everything and everyone and no one is taking care of me. Blessings to you and your boys.

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Betty Vertin avatar

Betty Vertin

Candace, thank you for your comment. I often think my first two years after diagnosis was the hardest. It took me that long to come to terms with everything. Give me a follow on FB; I'd love to connect.

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Mikki Wyatt avatar

Mikki Wyatt

I follow your column. Thank you for writing. My husband is a father to five sons with DMD. Three have passed away, two since he and I have been married 8.5 years. We have had sole custody of the youngest two (currently 18, senior in high school and 16, sophomore) since 2019. I have been their primary caregiver ever since then. Before full custody, we would have them every summer, at which time I was the primary caregiver as well.
Our life is very complicated and I try to make it as normal as possible. We live in a small town where we cannot get healthcare aids, and my husband took a job three hours away when he was laid off in the fall. He lives in that town four days a week and comes home on Thursday - Sunday.
He is an amputee (right leg), so even when he is home he cannot help with the boys. tries to help as much as possible, doing dishes and such.
Noel, our 18-year-old son, is looking forward to going to college in the fall. We have had him make his own calls and emails for as much as possible. He does his banking and ordering. There are plenty of things he still needs to understand, but he is making progress.

Thank you for the insight and sharing your life with us!
Mikki

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