Probably the biggest single change that I never shared is that Mark move out of the biggest room in the house, to the smallest room in the house. The shuffle was to accommodate another family that moved in with us. Mark had moved from his special status of palliative, back to his normal happy self. He went from being the focus to just being part of the gang that live at 47.
In late November Mark took a turn for the worse and was rushed to hospital. I was working in Calgary at the time. I got the call in the evening, he was not expected to make it through the night. I jumped the red eye, hoping to be there before he breathed his last. When I arrived the next morning he was just hangin on. I leaned in close and said, "Hey little buddy, it's your Dad." I had been away for 7 months. His response was minimal. Then I leaned in even closer and said, "If Jesus comes to the door and calls your name, GO!"
I guess Jesus never came to the door, I'm not sure why. My son has died so many times, and then bounced back to die another day. Today there's not much left of him, and yet he lives.
His room is now in the basement/playroom. He's there because he requires 24/7 care and it's less disruptive to the rest of the house to have him there. A nurse comes in for the overnight shift from 11 to 6. Linda and I are splitting the rest of the time.
Although there were several reasons why the job in Calgary didn't pan out, caring for Mark has to be considered a major factor. This scenario is simply not sustainable without the support group that we have in Toronto. Having said that, it's not even sustainable at home. We are hoping and praying that Mark will be transferred to a hospice in the next few weeks.
The words of a song from the 70's have been rolling around in my mind. It's a song that was written by Allen Reynolds and recorded by Crystal Gayle, Ready for the Times to Get Better.