I’m sitting at my husband’s hospital bedside thinking about what I’ve learned here, the lessons from our hospital stay. Lessons about advocacy, about asking lots of questions, about being the expert on his care. And the lessons from our hospital stay that I learned about taking care of myself, or at least the penalties for not caring for myself. We are here after deciding to see a pulmonologist, because while waiting for the scheduled visit to the his gurgly breathing got worse so Larry decided he wanted to go to the ER.
First is to be a loud but polite advocate. I learned this lesson years ago from my mom’s hospital stays but somehow had to relearn it. This is especially true with unusual diseases. You are the expert, though you are in an environment of experts on other things.
I asked each clinician “are you familiar with Multiple System Atrophy because I know it is a very rare disease.” Most said no, which enabled me to fill them in. I felt free to share solutions I had read about on the Multiple System Atrophy blogs.
He came in for gurgly breathing. I had read about a patient saying that a Respironics Cough Assist T70 machine was extremely helpful so I kept asking for one until it arrived in the room. I had read that suction was effective, which they did, both deep suction through his nose into his lungs (which he hated) and shallow suction like at the dentist’s office.
With each clinician seeing him, I kept asking “what else can we do?”
When the pulmonologist finished sharing his treatment plan, I asked “what else can we do” and after a moment of thought he said “well, we could try a scopolomine patch to try up some of the fluids.” I jumped on that, saying I had read on the blogs that that was helpful to some patients.
I asked for physical therapy to get him up often and confirmed with the pulmonologist that it was important.
There were glitches that occurred during handoffs from one floor to another and one shift to another. Particularly around how often he was catheterized and how often he was clean up (washed and teeth brushed, etc.) So I asked that these things get taken care of more frequently. I only had him to think about. They had many people to think about. I was the expert on him and his care.
Lessons from the Hospital for CAREGIVER CARE
I learned my own lessons from our hospital stay the hard way. I was so busy making sure Larry got what he needed that I ignored what I needed and ended up falling apart.
My fear about his condition made me stay too late and come in too early, thus giving myself only a few hours sleep. My body started to throb with fatigue. The next night he seemed so distressed and there was an open bed in his room that they offered me so I said I’d stay, but couldn’t fall asleep.
REMEMBER FOOD AND WATER:
I wasn’t particularly hungry or thirsty and didn’t want to leave him to buy food, especially after some early glitches after the transfer from the ER to the observation floor. I munched on a few leftovers from his plate, and some peanut butter and crackers the nurses gave me. That was it for two days. I sipped a bit of ginger ale and drank some coffee.
My lesson from this lack of self-care came in the form of a melt-down at 2AM. A kind nurse sat with me as I cried and then threw up. I finally decided I needed some help (duh!) and some sleep (duh!) and called two dear friends to come get me. Good thing they answer their phone at 2AM.
My takeaway lesson for myself from our hospital stay: you can’t be an effective caretaker to someone else or manage your own emotions during times of stress when you aren’t taking care of yourself. That would seem obvious. It is obvious. But not when you are in a state of agitation and completely focused on someone else.
I’m getting lots of recriminations from my friends and family. I’ve learned my lessons, at least for now.