|Rob at home, late November, 2015.|
We were so hopeful.
Tonight I read one of the notebooks Rob kept right after he was diagnosed through the end of December. In this notebook he chronicled the medications he took and the time of day, his daily vitals, any procedures he had scheduled for the day, fentynal patches and when they needed to be changed, physical problems he was experiencing, where he was physically (at home, hospital), people who were visiting, and every now and then a few notes about things he wanted to remember and things he thought were important. Each entry was dated.
As I read, I noticed that Rob remained hopeful until his capacity to walk was threatened. The breaking point happened early one winter morning when he fell into a toilet, breaking it. It was three days before Christmas and I recalled grabbing him to to break his fall, checking him and then getting him up and back in the transport chair before I wheeled him out of the room. I then turned off the water and made sure he was okay again. I cleaned him up with new clothes and resettled him in the living room. And then I returned to the bathroom to clean the floor. It was just a few minutes after 6 a.m. I can't recall who called the plumber, but I'm guessing it was Rob. By 8:30 a.m. we had a new toilet and the name of a handyman who I then phoned. He came to our house the next morning to install a handicap bar in the bathroom and refused to accept any money because his wife was battling breast cancer and he knew.
And even though I thought I had done a good job of reassuring Rob who was both embarrassed and scared, I read tonight that he was most worried about me. "Mary Ann has to do things she should never have to do. I can't even clean myself up. I tried and almost fell again. I need her help for everything."
What neither of us spoke about was that Rob's capacity to stand and support his weight using his right leg was getting progressively worse. So worse that in a week he would no longer be able to stand. What we didn't know was that he would never stand again. He would never walk again and this incapacity would return him to the hospital on December 30 for a three week stay in the Intensive Care Unit followed by a week on a post surgery floor, 9 days in rehab and then back to hospital with another staph infection flowing through him.
My husband left home the morning of December 30, 2015 and would not return home for 50 more days. When he finally did come home in mid-February, it would be to die.
We were so hopeful, once.