3 things that make my life as a Duchenne MD caregiver easier
I have learned a lot about caregiving in the last 16 years
Written by |
With seven children — Lexi, 25; Max, 20; Chance, 19; Rowen, 17; Charlie, 15; Mary, 11; and Callie, 4; three of whom have Duchenne muscular dystrophy (DMD) — I have entered the zone of a veteran parent and caregiver.
Max, Rowen, and Charlie were diagnosed with DMD in 2010 when they were just toddlers and babies. I don’t claim to know it all, but I have learned a lot about caregiving in the last 16 years, and I wanted to write about three things that make my job so much easier.
A good shower chair
Rowen stopped walking when he was 11, after he fell and broke his leg. He went from an ambulatory child to a nonambulatory child overnight, and my role as a caregiver changed immediately, including learning how to shower someone who could no longer stand up.
We went to a local pharmacy and bought a small shower chair for less than $100. We used it for years. Rowen was easy to transfer when he was 11. However, as he continued to grow bigger yet weaker because of his disease progression, we needed something more. But I put off getting a new shower chair because the good ones are expensive, and I didn’t know insurance would cover the cost of one. However, after attending a Parent Project Muscular Dystrophy conference and talking to other parents about the process, we got one.
It was life-changing. It had wheels to push him in and out of the shower and even over the toilet, reducing the number of transfers required. Rowen was much more comfortable with the headrest and armrests. Other features like recline and tilt made it easier for me, as a caregiver, to help him with his showers.
This past year, we used insurance to also buy a portable shower chair to take with us on vacation and for clinicians who require overnight stays.
A ceiling lift system
Having three sons with DMD is physically demanding, and my husband and I need help lifting them. Rowen weighs more than I do, and I cannot lift him safely, but having a ceiling lift makes it so easy. After we get the sling under the boys, the lift does it all.
I am fortunate to have a ceiling lift system. They are expensive, and insurance does not always cover them. In our case, my brother-in-law hosted a fundraiser so we could buy and install one. It is a gift that keeps giving.
I also use a Hoyer lift, which acts in much the same way as the ceiling lift, except I must move it to where we are moving the boys — their chair, shower chair, etc. It takes some core strength, and my core, especially after seven children, is not that strong. I often feel a tweak in my back when I am positioning it.
The Hoyer lift works great when I am traveling, and I take it with me, but I prefer the ceiling lift at home. It lifts the boys, and I pull them gently along the track and lower them. I do not want to imagine caregiving without it.
A positive attitude
The last thing is not something you can buy. Insurance definitely doesn’t cover it! But that is OK, because it is free and up to you. It’s a positive attitude.
Life as a Duchenne caregiver and parent can be stressful and challenging. It is full of ugly days, impossible decisions, and loss. I have bad days and weeks. I write about them here often.
However, I will not let the bad days outnumber the good ones. I laugh with my sons. We make lots of jokes. In our family, we believe we can figure it out. We have faith. We count our blessings. We cry it out when we need to, but then we dry our faces and carry on.
I can’t change Duchenne, but I can control how I react to it and model that for my sons, who undoubtedly deal with an even harsher side of the disease. We don’t let Duchenne have the final word about anything.
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.
Leave a comment
Fill in the required fields to post. Your email address will not be published.