I have a growing list of limitations, as a result of my facioscapulohumeral muscular dystrophy (FSHD), my blindness, and other injuries from a long-ago head-on collision with a drunk driver. My wife, Wendy, and my daughter Jill, who are my primary caregivers, provide essential help every day: preparing meals, doing the laundry, and much more. I haven’t been able to do the wound care necessary for two spider bites that just won’t heal. That’s just one more caregiving duty on the ever-growing list that Wendy and Jill share.
Still, I do as much for myself as possible.
I can get dressed, do simple kitchen tasks, and take care of most of my personal needs. I don’t need round-the-clock care, but Wendy and Jill are now on call 24/7. It’s a big change for us.
Changes in our routine
I still get up earlier than them to enjoy a cup of coffee and spend some quiet time in prayer and Bible study every morning. I’m usually up around 6 a.m. Wendy likes to sleep until about 8. I do my best to move around the house as quietly as a blind guy using a walker can.
I typically park my walker in the hallway next to the kitchen and use the kitchen counters for support as I make my coffee. I used to take my morning pills while I heated water in the microwave for my coffee, but I recently altered my routine for two reasons: First, the beeping microwave disturbed Wendy’s sleep. Second, with my FSHD progressing and weakening the muscles throughout my body, I can no longer take my pills while standing.
I’ve switched to putting instant coffee, a splash of milk, and a bit of sugar into my travel mug, then filling it with hot water from the faucet. I keep my pills in the basket on my walker and take them after I get seated in the living room to start my morning prayers.
However, with the recent deterioration in my right arm, my movements have become more awkward and I’ve lost a lot of grip strength. This has led to a number of messes that I couldn’t manage independently.
The other morning, after filling my coffee mug at the sink and screwing on the lid, I slid the mug along the counter with my left, now stronger, arm to move it to the cup holder on my walker. Unfortunately, I caught the mug on the handle of the microwave. My hand simply wasn’t strong enough to hold on to the mug. It hit the kitchen floor with a deafening clatter. The little tab that seals the cup was knocked loose, and coffee began leaking onto the floor.
I was able to bend down and grab the mug without falling, which was a small victory for me. However, from there, I was helpless.
I found myself holding on to the counter, with a puddle of coffee between my walker and me.
I called Wendy, who was already out of bed and coming to see what had happened. I followed the counter to the opposite end of the kitchen and sat down to wait as she mopped up the coffee mess. Eventually, she returned to bed, but I doubt she got much more sleep.
Just a couple of days later, I was working on some music in my computer room/music studio. I reached for a bag of apricots on a shelf behind my computer. The shelf is shoulder-height when I’m seated, putting it at the very limit of my range of motion. As I grasped the bag of apricots, I brushed a glass container that was next to the bag. It fell onto the desk, rolled, and shattered as it hit the floor.
Wendy was out doing some volunteer work and Jill was in another city for work. I found myself trapped at my desk, singing Annie Lennox’s “Walking On Broken Glass.” I didn’t give that a try.
Fortunately, it was only a little while until Wendy got home. I sat at my desk, feeling defeated, as she cleaned up the mess.
They’re not complaining, but I know Wendy and Jill are feeling the pressure as caregiving tasks pile up. More and more, I need them to be on call, to clean up the messes I know are coming, and to help me with the next task I can no longer do myself.
This is the unfortunate impact FSHD has on those of us with the disease and our families. I hate what it’s doing to Wendy, Jill, and the rest of my loved ones, but I’m grateful that they’re still willing and able to do whatever needs to be done.
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