I returned home this past Saturday from my first time in a respite care facility, where I’d been staying for nine days.
The backstory is that my wife, Wendy, and daughter, Jill, who are my primary caregivers, love to travel together. In the past, I’ve been able to manage daily living while they were away with the assistance of a woman who feeds Jill’s cats. She’d check on me in the morning, and other family members would check on me later in the day.
For their latest trip, Wendy and Jill decided to stay a few days longer to vacation during a business trip to Indiana. So, because of my facioscapulohumeral muscular dystrophy (FSHD) progression, blindness from an automobile accident several years ago, and other disabilities, I needed to come up with a plan to make sure I had assistance 24/7.
Because my FSHD progression has accelerated this year, I’ve already fallen several times. Deterioration in my right arm in recent months has led to difficulties in eating, dressing, showering, and toileting. My legs are much weaker, and I can no longer walk. I also struggle to stand up to transfer. Thankfully, I now have a cushion that lifts me to a height that allows me to stand up, which has made transferring a little easier, but I still have difficulty turning my feet.
Every transfer to my lift chair, shower chair, toilet seat, or car seat is a struggle. There are times when I can’t get my pants up without assistance. Recently, I’ve struggled to get my legs into bed when I lie down at night. Most of the time, I need Wendy to pick my legs up while I flop down. It was obvious that I needed 24/7 care while my family caregivers were out of town.
I now use home health aides for four hours a day on three mornings a week to assist with the activities of daily living, such as meal preparation, showers, and toileting. I reached out to the Pennsylvania Catastrophic Loss Benefits Continuation Fund, a special program that covers some of my medical needs, including the cost of my home health aides. I had hoped it could provide 16 hours of coverage per day, and then I’d rely on other family members to stay overnight.
But the fund could only cover home health aides for eight hours a day, seven days a week. That wasn’t workable because it would mean I’d have to ask family and friends to cover the other 16 hours a day. Respite care, therefore, became my best option.
It’s the least I can do
As the National Institute on Aging explains, respite care “provides short-term relief for primary caregivers, giving them time to rest, travel, or spend time with other family and friends.” It can “take place at home, in a health care facility, or at an adult day care center.”
I did some online research and made some phone calls to local facilities, only to discover that many of them don’t provide respite care or have minimum stays as long as 30 days. Finally, though, I found a facility that provides respite care with only a five-day minimum stay. It was close to my son Ryan’s house, so I booked it for the time that Wendy and Jill would be out of town.
It worked out pretty well and allowed Wendy and Jill to travel without having to worry about me falling at the house. That was important to me, because I knew they both needed a break from the 24/7 care they provide for me. Ryan and his family came to visit me nearly every day, which I greatly appreciated.
I tried to participate in activities as much as I could, and even found a couple of pianos, where I could spend some time playing music for my grandkids, Julia and Theo.
The nine days went by pretty quickly. I’m comfortable returning for another weeklong stay in August, when Wendy and Jill will head to North Carolina to visit my wife’s sister. I’m also planning a five-day stay in September so that they can attend the Mountain Craft Days festival in Somerset, Pennsylvania.
I can’t say I’m thrilled to be utilizing respite care instead of staying at home while Wendy and Jill are traveling, but it’s important to me that they get a chance to do the things they love. At the end of the day, I think utilizing respite care to allow them time to decompress and enjoy life will also benefit me during the remaining 348 days of the year that they serve as my caregivers. It’s the least I can do for them.
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.
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