Striving for a longer period of stability with my home nursing staff
At the beginning of the year, I felt a sense of calm because I finally had enough nurses to complete my home nursing staff. There was no pressure to find a replacement for a nurse leaving my case. That kind of calm is priceless in my life with SMA.
Unfortunately, it lasted only six weeks. My heroic nurse, who had covered many nights throughout 2025 while I was dealing with a staffing shortage, needed a change. At the end of February, she told us she’d be leaving at the end of March.
Was I surprised? Yes, but not in a huge way. I’ve been receiving home healthcare for 39 years and have seen many nurses come and go.
I am disappointed that the calm period lasted only six weeks. On the other hand, I see this short period as something I can build on. It’s been many years since I haven’t had to worry about finding nurses. Therefore, I appreciate any break from the search, even if it was short.
That doesn’t mean I don’t want a longer break. My next goal is at least six months of calm with my nursing staff, then a year, and so on. To achieve these goals, the two nursing agencies I use will need to recruit more nurses for my case.
Then, my nursing agencies, my mom, and I will have to brainstorm creative ways to retain home-care nurses for longer periods. Many attend school and work in home healthcare simultaneously. Once they finish school, they often want to work in a hospital or a field besides home healthcare.
I have a couple of nurses right now who are in school, so hopefully, we can figure out a way to keep them once they finish their classes.
The pressure is on to find a replacement for one of my three night nurses. In just three weeks, I’ll need someone to cover Sunday, Wednesday, and Thursday nights.
The more nurses, the merrier
Despite the short time window, I have faith that my nursing agencies will find someone great. They may even find multiple people — perhaps one nurse can work Wednesday and Thursday nights, and another can work Sunday nights.
I don’t just want the minimum number of nurses I need to complete my staff. Instead, I want a surplus. This gives me a better chance of having someone available to cover shifts if a nurse calls out sick or goes on vacation.
Having a surplus is also good for when I go on vacation. Last August, I wrote that my mom and I bring two nurses with us on overnight trips. We’ve since decided that, because we usually do so many activities during a three- or four-day trip, it would be better to bring three nurses.
When I’m at home, my nurses usually work 12-hour shifts. However, on vacation, we are constantly on the go. Eight-hour shifts would better preserve each nurse’s energy, preventing them from getting too tired on the trip.
For some nurses, taking multiday trips with their patient just isn’t their thing. The more nurses I have, the bigger the pool I have to draw from when deciding who to take with me on vacation.
I’m already looking forward to the end of the current nursing search. My expectation is that I’ll come out ahead of the game, and that my nursing staff will be even more stable than it was earlier this year.
No matter the setback, I always build upon my hope and faith. That’s what keeps me soaring!
Note: SMA News Today 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 other 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 SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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