My oldest son, Matthew, lost the ability to walk early, at age 8. His brother, Patrick, was 13. Matthew and Patrick were born with a rare genetic muscle disorder, Duchenne muscular dystrophy. There are no effective treatments and no cure. Every muscle is affected, including the heart. The disorder quickly steals physical ability. When they were diagnosed in 1997, their life expectancy was late teens to early 20s.
It’s a complicated and frightening diagnosis for a family to bear, and it only got more difficult as the boys got older and began losing their ability to perform self-care and other physical activities. The last months of walking, before they needed wheelchairs full time, were ugly. We would lift them to a standing position only to watch them walk a few steps before collapsing in a heap. It was like trying to balance a large bag of flour strapped to stilts; they didn’t have enough muscle tone to hold their bodies rigid. It was as heartbreaking for my wife and me as it was scary and demoralizing for our sons.
The cruel irony was that they were losing their independence while their friends were gaining theirs. At the age my sons stopped walking, their friends were trying out for school sports and spending the night at a buddy’s house. If their friend’s house had steps out front, my sons weren’t able to get inside — lugging a 300-pound electric wheelchair up a staircase wasn’t practical. A couple of years later, as Matthew struggled to lift his arms off his lap, students his age were learning to drive and getting summer jobs.
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Even as the disorder progressively robbed them of strength, my sons learned to compensate. They’d drive their wheelchair tightly against a wall near a light switch and “spider walk” their hand up the wall with their fingers to turn it on. Ability to perform tasks would stay constant for a period of time, then as different muscles weakened, they’d no longer be able to do things they could days earlier. The final tipping point was often unpredictable.
Those are the cards muscular dystrophy deals a family, and we played our hand as best we could. We encouraged participation in student government and focused on getting the boys prepared for college. We were no also longer only “Mom and Dad”; we became full-time caregivers for our sons.
Some of our caregiver tasks were fairly benign and others more personal. Helping someone put on a jacket is one thing; helping them use the toilet is another. What young adult wants their parents helping them in the bathroom? Most anyone else would be humiliated, yet Matthew and Patrick relied on us to be sensitive to the situation and take care of their needs.
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Caretaking didn’t end at 9 or 10 at night when we put the boys and ourselves to bed. Matthew lost the ability to roll over in bed independently when he was 10. He slept on his side. When he became uncomfortable, he called out to me, and I got out of bed to turn him over. Rolling Matthew was a bit of a process. He wanted his feet positioned a certain way, his arms had to be folded one over the other and the covers couldn’t touch his ears. Matthew wore a face mask attached by a hose to a machine that helped him breathe at night. The straps to the mask could pinch his ears, and he didn’t like the hose touching his head.
Share this articleShareI sometimes became frustrated and told Matthew to “just go to sleep.” In the morning, I would apologize for being abrupt and reassure him I’ll always help him. I asked “What’s your job?” “To call you,” he responded. I then asked, “What’s my job?” “To come help me,” was his answer. He typically did his job better than I did mine.
Daily dressing took time, and there was a system. Socks needed to be pulled up completely; shirts and pants had to be adjusted and readjusted. It was as much for comfort as it was about Matthew having some control. Sitting on a folded seam for an extended period gets uncomfortable. There were always “minor adjustments,” such as pulling his pant legs down a little more, fixing his collar and turning under clothing tags. Parents whose sons have muscular dystrophy suggest the insistence on clothing being lined up exactly is a sign of an obsessive compulsive tendency or disorder. That wasn’t what I saw with Matthew. It’s not surprising to me when someone like Matthew, who has minimal control in his life, takes every opportunity to exercise a bit of control over his care.
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As difficult as it could be, there are silver linings to being a caretaker. Safely bathing our sons took two people. We had a well-practiced routine. I shaved him and washed his hair. Alice cleaned his face and we “argued” about who would wash his backside. We joked and sang off-key to annoy him and make light of the circumstances. After being washed, Matthew liked spending a few minutes alone under the warm water, pretending to sing opera. We listened, amused, from the bedroom.
The one job I always enjoyed was giving my sons a shave. We rarely talked while I worked, as the boys wanted to avoid being nicked by the razor. I took my time and made sure they were satisfied with the results. Giving my sons a shave allowed me to admire them closely and made me realize they were no longer little children. Yes, they needed assistance with some basic needs which may cause us think of them as boys, yet they were men. When diagnosed, the doctors told us our sons might not survive their teens. Performing this simple task reminded me to be grateful for any extra time we had together.
Some early mornings, after Matthew called me to roll him over, I hesitated before going in my sons’ room. I paused, hoping against reason that when I went in, there wouldn’t be hospital beds, I wouldn’t hear the hissing of the low pressure mattress or see a patient lift pushed against one of two wheelchairs. But I went in, saw their equipment in the dim light and quietly turned Matthew before checking to make sure Patrick was covered. This was my job, and my boys needed me to do it without complaint.
Matthew died February 2013 at age 20 from heart failure. His death was not unexpected, but attempting CPR on him and failing to save him made the loss even harder. He is dearly missed.
Patrick is now 21, and his health remains good. He’s in his third year of college, attending full time. When he was little and still walking, Patrick asked me about one day needing a wheelchair like Matthew. It worried me, but I was honest and told him he would. Asking if he was okay with that he said, “Yes, I just want one faster than Matthew’s.”
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I learned a valuable lesson: Perspective is important. Needing his parents to take care of his needs is just a part of my son’s life. It’s not who he is. I am my son’s caretaker. But I’m also a father to a young man who is making a future for himself, who aspires to work as a college administrator and participates in drug studies in hopes of advancing research on his disease. He humbles me, and I’m grateful for each day I have with him.
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