This past weekend was the first time since January 8th that I’ve felt my body physically relax. After operating in fight-or-flight mode for the last 8 weeks it felt good to feel my shoulders drop, my stomach unknot and to be able to breathe deeply again.
My son, Jason, has had MS (multiple sclerosis) since he was 20. Over the years he would have flare-ups, be treated, and recover, and get on with his life. We thought it would go on this way for the rest of his life… but the course of the disease changed and he needed a cane to assist him, then six years ago he needed a wheelchair. The disease had become progressive.
On January 8th his friends called to tell me he was in the hospital. He’d caught a virus, and spent 11 days there, then was sent to a nursing home/ rehab center to get stronger and finish healing. He hated the whole experience, so he left and went home to recover with all of his friends helping him. The problem was that the MS left him confined to his bed this time.
We hired a Home Health Care team to come in 8-12 hour shifts while I looked for another place that would be appropriate for him. He had a village of friends, doctors, and caregivers surrounding him, yet things were still going downhill. It became a race against the clock – and his insurance company – to find the right place for him.
On February 7th we threw a 53rd birthday party for him, and he was able to sit up and visit with his friends, and we all enjoyed his birthday cake: a deliciously moist dark chocolate cake with strawberry filling, pale strawberry buttercream icing, and fresh berries on top. It was a thing of beauty.
Three days later, after a particularly bad night, he was taken to the hospital crying in pain. His friends again called to tell me, and Turk and I headed there to see what was going on. He had developed an infection that injured his kidney. At 10:30 at night they released my heavily- sedated son to us with an explanation of the problem, how they had treated it, a bunch of tubes, bags, suggestions, and a prescription to be filled the next morning.
Between all of us, we managed for five more days (while I continued struggling to find a place for him) when his favorite care-giver called to tell me she thought he needed to go back to the hospital immediately. She wanted me to call an ambulance!
She was right, Jason definitely needed to be back in the hospital. Since the downtown one, just blocks from his apartment, was at maximum capacity he was taken to a newer and much less-crowded one on the north side of the city. Rather than treating and releasing him again, this hospital kept him and worked hard to get his pain under control, cleared up the lingering infection, and a social worker there helped us find a facility to move Jason into that could handle his medical issues AND would accept his insurance.
Jason is slowly adjusting to his new life in a retirement center/nursing home where he has 24/7 care. The nurses and attendants treat him well, he says that the food is good, and most importantly, he’s close to all of his friends!
There are still a few important things I have to work out, but I’m not hyperventilating all of the time, I’m not worrying about him every second of the day, nor am I handling everything alone. My son has built the most wonderful village around himself to help us both, and I am grateful beyond words for each and every one of them!
XO Donna