Adding new adaptations around the home to allow my caregivers a break

If you read my last column, you’ll know that I’ve been experiencing extreme physical challenges in the last couple months. These changes are a result of a combination of my facioscapulohumeral muscular dystrophy, damage from a major automobile accident many years ago, and simply growing old. This has resulted in a lot more pressure on both my wife, Wendy, and my daughter, Jill, who are my primary caregivers.

Wendy, Jill, and I are working together to try to adapt the house to my new reality. As I wait for a power wheelchair equipped with LiDAR technology that will prevent me from careening down the stairs or crashing into walls, Pennsylvania’s Catastrophic Loss Benefits Continuation Fund has rented a slim, 16-inch, regular wheelchair for me to use.

That’s proven to be a mixed blessing. As a blind person, there are times when I use my arms to make sure I’m on course while I “pedal” the chair forward with my feet. Unfortunately, I’ve learned to be cautious when making turns. Otherwise, the front wheels run over my toes, which isn’t fun.

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I’m also waiting on insurance approval to purchase a seat-to-stand cushion that will pick me straight up, not forward. In the meantime, we’ve moved the current seat-to-stand device, which isn’t comfortable, from my kitchen chair to the wheelchair. This device works like a basic catapult. As I lean forward and start to stand up, it rises from the back and pushes me up and forward. Unfortunately, it isn’t a smart device and doesn’t have a latch. It doesn’t understand the difference between leaning forward to pick something up and a desire to stand. I’m still learning, but in the meantime, it’s catapulted me onto the floor several times.

We’ve begun eating in our dining room, as I can’t get the wheelchair over the offset at either entrances to our kitchen. This is also true for my accessible bathroom, which isn’t accessible to me in the wheelchair. I just spin the wheels when I try to get over the threshold. Instead, I utilize the cushion to help me stand, then use my walker to navigate the bathroom. This isn’t the safest way to access the sink, shower, or toilet, but it’s the only way I can spare Wendy and Jill from assisting me into and out of the bathroom every time I need to use the facilities.

Since I can’t access the kitchen, I can’t prepare my morning coffee or make my own breakfast. Wendy and Jill are now responsible for preparing all of my meals and delivering them to the dining room. I depend on them to bring me a cup of coffee and even a glass of water.

I’ve realized that I need to take some steps to relieve the pressure and stress both Wendy and Jill have been under. Three weeks ago, I began receiving home health services. Three mornings a week, I have aides who help me with showering, dressing, toileting, preparing meals, eating, cleanup, and more. The aides come when both Wendy and Jill are out of the house. I think this allows both of them to go to work, volunteer, shop, and more, without inordinate fears for my safety. They’ve had to help me off the floor multiple times just in the past two weeks.

I’ve also come to the realization that both Wendy and Jill need some time off to do things they enjoy. Now that Jill’s done with her master’s program at the University of Pittsburgh, she’d like to take some time off to travel and destress. Wendy has been Jill’s traveling companion for many years. In the past, I’ve been able to stay home on my own, with family and friends stopping by to make sure I was all right. That’s no longer an option for me. I’ve made arrangements to go into respite care for a week in July and another week in August so they can travel without any concerns for my safety.

Last week, when Wendy threatened to cancel the trips to stay home and take care of me, I asked her to go on these trips for my sake. I am feeling more like a prisoner in an uncomfortable wheelchair every day, but I don’t want Wendy or Jill to enter this prison with me. She’s back on board to travel with Jill, which makes me happy.

I’ll be missing a couple performances at my regular care facilities while Wendy and Jill are out of town. I’m hoping I can talk the respite care facility into allowing me to provide a little entertainment while I’m there. Like Bread’s “Guitar Man,” I’m always looking for another place to play.

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.