The evening of September 17, 2023, Steve went to the local emergency room and within 18 hours of onset of symptoms he was paralyzed from the shoulders down.
You can read Steve’s words about that night here, and here.
He was eventually diagnosed with transverse myelitis.
It’s a rare and chronic, yet not a terminal condition.
Unknown to me at the time, my first act as caregiver for Steve was the early evening of September 17, when I had to help him walk to the elevator to get him to the car. While in the ER Steve’s walking became increasingly unsteady and at first, I helped him walk to the bathroom and several hours later that transitioned to a bedside toilet and eventually a catheter.
The tiny details of that night are gone, yet I still feel the big moments of terror and no answers.
My second phase of caregiving began with this 15 day stay in the neuro ward. Steve would remain unable to feed himself, brush his teeth, and use the call button for several days. I stayed there with him. I fed him, brushed his teeth, and called for nurses when needed.
I was able to sleep a couple of nights in my own bed while his sister stayed with Steve.
While he was at inpatient rehab, I was there every day, except for one. I just could not do it. After almost 45 days I just could not bring myself to make the trip to rehab. I had to take a break.
Then they sent Steve home with me.
I thought that him being home would be much easier than going back and forth every day. But it wasn’t. Looking back, the hospital stay and rehab were the easy parts.
Steve went into rehab not being able to walk, and when he left, he could use a walker, as long as someone was there and used the gait belt.
I was “trained” on catheter care, holding the gait belt while he walked, and how to transfer him from the wheelchair to the car.
After he got home, he had PT and OT three times a week for two hours.
We were both terrified and had to figure it out alone. I was not given any caregiving resources. We had very little information about transverse myelitis.
Within a year I would be in the ER myself with dangerously high blood pressure and a racing heart.
Nobody asked if I would be a caregiver.
Everyone, including myself, just assumed.
I hope you will stay with me as I write about and share what I have learned, the struggles, the success, the moments of sheer panic, the joys, the anger, the depression, the things I have learned about myself, the things that help me cope day to day, the good, the bad, the ugly about caregiving, and the resources I find most useful.
Hang in there – you are doing an amazing job – even if it doesn’t feel like it most days!
~ Shelly