We’re down to one nurse working 2 nights all week. If you didn’t do well in math, that means we have 71.42% of the week without overnight nurse coverage. I have a friend with a severely disabled child, and she is not sure she even wants nursing. For us, I’ve been known to say it’s the single most important support we have for Catherine and our family.
Before we got nursing, for the first 3 years of Catherine’s life, Brian stayed awake 22 hours each day. I would get up early before work, and he would go to sleep for 2 hours before I left for the office and then he’d drag himself out of bed and be responsible for Catherine all day. Some of my cutest memories are walking in after work to see her sleeping on his chest. He’s sleeping, too. How could he not? Then he would sleep all day on the weekend to try to make up for what he lost through the week.
I remember desperately trying to get overnight nursing arranged for Catherine. So many forms to complete. So much anxiety. I’ve told folks I always felt like it was what I imagined a drug deal would be like. Very secretive. Not clearly understood except by those “in the know.” And lots of concern that one wrong move would be catastrophic. I still fear we’ll lose nursing somehow. Budget cuts are rampant. Someone might decide she’s no longer eligible. Impossible to believe that, right? The thought haunts me.
I hadn’t really thought about “losing nursing” by not having the shifts staffed. The result is nearly the same. The bottom line is that when we don’t have nursing shifts covered, one of us has to stay awake overnight and make sure Catherine is safe and cared for well. As we face that reality, I think about the effects of not having enough sleep. Sure, you can read about it on websites – irritability, obesity, loss of short-term memory, reduced immune defense. No one writes about the effects we experienced when we dealt with this chronically during the early part of Catherine’s life. The hardest part of not having nurse coverage and not getting enough sleep is that it puts tremendous stress on a marriage.
When we don’t sleep, we lose patience with each other. We don’t make good decisions. We can’t remember what we planned to do and we have little awareness of what might cause frustration. God knows we can’t really be helpful. We get sick and place more demands on each other. We eat poorly. We fight. We don’t talk. We don’t have energy for anything that’s not mission critical. It’s ugly. And I don’t like it one bit.
My marriage is my most important blessing in my life. I adore Brian. I want him to be happy. I want us to laugh and celebrate our 60th anniversary. In fact, I just wrote that on a goal sheet entitled, “In my life, I will…” So, faced with the possibility of a nursing shortage of more than 71% for our family, I’m trying to figure out how I’ll protect our marriage and keep our family functioning well. I keep reminding myself that we haven’t actually LOST nursing. We’re in a tough spot, that’s all. It shouldn’t last forever. There is hope every day that our agency will find new nurses who can care for Catherine well and stay awake. And without even knowing it – they’ll also keep our marriage and family healthy.