I’m keeping the faith that our night shift nurse shortage will find a solution
Unfortunately, my mom has had to cover too many hours at the expense of rest
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When I graduated from college in 2005, I received a special gift: a large whiteboard to hang on the wall. It had 38 pictures on it showing many of my adventures with SMA and other key moments I’d had over the years.
Those pictures have remained on my wall ever since. Many of my nurses and others who have come to my house have told me how much they enjoy seeing them and looking at different parts of my life. Unfortunately, though, a couple months ago, the whiteboard fell off the wall and the glass covering it shattered, something I came to view as symbolic.
The glass acted as a barrier, protecting the pictures that represented the events of my life from the outside world.
Similarly, I’ve always felt like my life has had a divine protective barrier sent from the Lord. This barrier has shielded me from many things that could’ve happened. For example, I’ve been spared a lot of hospitalizations. Although I’ve had a few surgeries, I’ve been admitted only twice for respiratory infections since I was 4 years old.
The other thing my mom and I have been shielded from for most of my life is having night shifts go uncovered by my nurses. I’ve written a lot about not having enough nurses, especially night nurses, and my home care agency’s search to find new ones. Yet, the nurses we’ve had have always acted as canteens of generosity. They make the necessary sacrifices in their own lives to work a lot of hours to make sure I’m covered and receive the care I need.
Despite nursing shortages everywhere, my nurses strongly wanted to protect my mom and me by providing coverage we could rely on. Having reliable coverage at night allowed my mom to sleep. This, in turn, allowed her to go to work every day as a nurse at the hospital she worked at for over three decades.
Being able to work allowed my mom to provide for my sister and me, while maintaining a home. Reliable coverage also allowed me to have the peace I needed to be successful in school and an advocate for access to Medicaid programs.
There has always been a revolving door of nurses leaving my home to work somewhere else and new nurses coming in. Despite this, no matter who is on my nursing team, they’ve always risen to the occasion.
New night shift woes
Then, like the glass covering my whiteboard, all of it came crashing down. I first noticed serious holes being punctured in my protective barrier last September. That month, every Saturday night shift was open. For the first time, we were so short-staffed that those shifts didn’t get covered.
My mom and I were shocked, and I was sorry to see her have to cover them, particularly because I knew her body doesn’t handle staying up at night very well.
I had hoped it was just a fluke, and that my coverage would return to normal. I believed that someone on my team besides my mom would cover if there were any nighttime holes in the nursing schedule going forward. That’s how it’s always worked in the past.
Those shifts did end up being covered for a few months. But about a month ago, things took a turn for the worse. Several of my night shifts went uncovered, and the first week of June was the worst of them so far. That week, my mom had to cover an astonishing 80 hours of my care.
We’re facing serious problems right now, but my mom and I have faith that our coverage of both days and nights can return to being solid and consistent like it’s been in the past. My whiteboard of pictures was recently repaired, so this situation can be fixed as well.
My mom has been so courageous in covering all of these nights. One day, she decided it didn’t matter that she’d covered the night before and didn’t get any sleep. And she still took me to Cure SMA’s SMA Summit of Strength Program so that I could have the opportunity to make important connections. Then she covered that night as well.
That’s the kind of determination that helps me soar!
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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