Making time for self-care is vital in DMD caregiving
Date nights, long walks, and no-appointment Thursdays are my new strategy
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I live in rural Nebraska with my husband, Jason, and seven children. Three of them — Max, 20, Rowen, 17, and Charlie, 15 — live with Duchenne muscular dystrophy (DMD), so I am a mom to many as well as a caregiver.
At times, it feels like I’m giving everything I have to my family. Last Monday, for example, after helping Max at college and spending several hours getting caught up on laundry, I took my 4-year-old daughter, Callie, to the park to play, then left to pick up Rowen from school for a physical therapy appointment. Next, I took him home and picked up my 11-year-old daughter, Mary, and Charlie from school. Then I took Charlie to his physical therapy appointment. I got home around 5:15 p.m. and was absolutely spent.
Between 8 a.m. and 5:15 p.m., I didn’t do anything for myself. I didn’t even take the time to use the bathroom because I was late picking up the others at school after helping one of my sons in the bathroom. I held it for an hour.
I know I’m not the only mom taking care of kids who has to hold it sometimes, but when days go by before I can take a minute for myself, I’m not at my best as a human, a mom, a wife, or a caregiver. The past few months, I’ve felt the strain of caregiving more than usual, so I’ve begun doing three things to help me recover from the business of my life.
No-appointment Thursdays
It started by accident, but I don’t book anything on Thursdays anymore. One random Thursday, the kids had no activities or medical appointments, and it felt like a gift. On Mondays, we have physical therapy; on Tuesdays, preschool, dance, and physical therapy; and on Wednesdays, I teach a kids’ class at church. By Thursday, I’m running on fumes.
When that random Thursday landed, I was in such need and appreciated the extra time to rest and get things done around the house that I started to be deliberate scheduling Thursdays off. There are weeks when it doesn’t work out, but often it does, and I try now to always leave Thursdays open. It’s my favorite day.
Date night with my husband
My husband is an amazing help with our children. However, that often looks like him going in one direction and me going in the other. We see each other in passing, often sending text messages to keep each other informed about what the other is doing and which of our kids needs what. However, I want more time with him. He is my favorite person to be with, and although we are together, caring for and parenting our kids, I miss Jason, my friend and husband.
So we’ve committed to a monthly date night. We only go out for two or three hours, sometimes just to have a couple of drinks or a nice dinner. We’ve talked about going to the horse races; neither of us has ever been, but we’ve been told how fun it is.
On our date nights, we do our best not to talk about the kids, which, admittedly, is hard to do when you have so many! We’ve had some great dates so far, and we laugh and enjoy uninterrupted conversations. I often find myself smiling the entire day after a date. A the end of each date, we get out our calendars and schedule the next one! If we aren’t intentional about scheduling them, they won’t happen.
A long, weekly walk
Lately, I’ve been trying to walk more, but one of the kids is almost always with me. I’d like to do it by myself for some me time.
On Sunday afternoons, my daughter Mary practices softball, so I’ve begun going to a nearby walking trail after I drop her off. The first time I did it, I enjoyed it so much that I walked the entire 90-minute practice and decided to schedule a time each week to enjoy some quiet time alone.
The weeks I am at my best are those when I can do all three of those things. I’ve really come to appreciate being able to schedule time for myself.
Note: Muscular Dystrophy News Today 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 Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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