And, it was excruciatingly difficult. Even though we were so tired of all the caretaking that has to happen when caring for a completely paralyzed ALS patient and we had completely dedicated our lives and given up our immediate futures (gladly and without too much complaint, I must say) every little thing we did for him took on a new poignancy. For example, I noted in my mind last Saturday that I was bathing him and brushing his teeth for the last time (his weekday caretaker, Judy, would be doing that stuff while I was at work during the week). When my son and I put him to bed the night before his birthday I thought about how that was the last time we would put on his pajamas and all the other little things we had to do to make sure he was comfortable enough to lay motionless in bed for 8 hours. When my daughter and I woke him up and got him out of bed his last morning I knew that Don was ecstatic about that being the last time we would be putting that neck brace on and snapping those head restraints in front of his forehead. He use to say that every morning he felt like being locked in prison when we did that.
The morning of his birthday, we wheeled him out to the garden in our backyard. The birds were singing, the waterwheel (that he insisted on being installed before he died) was loudly spinning and splashing. As the hospice nurses were pumping him full of sedatives I joked in my best Klingon accent, "It is a good day to die" and we all had a laugh. Don's focus was on all of us, not himself. He told each person there how much he love them, how proud he was of them, how they should do what makes them happy. We figured he would peacefully fall asleep soon and when the nurses determined he was completely sedated we would turn off his ventilator. But he kept talking. And, talking. Then he fell asleep. Then he woke up and talked. And, joked. For hours.
When he had more than enough Ativan, morphine and Versed to kill an elephant he said, "This is taking way longer than I expected. You should call my respiratory therapist, Jimmy, he will tell you what to do to speed this up". We all looked at each other and said, "Nah, Don's just high. Why call Jimmy?" An hour later, the nurses realized that maybe Don kept waking up because he was experiencing overventilation and that we should call Jimmy! I smacked my forehead as I have done many other times during the last 30ish years when I had mistakenly ignored Don's advice. Don knew what he was talking about. The nurse called Jimmy and he talked her through how to titrate the breath rate down on the ventilator while pushing the sedatives.
Not long after following Jimmy's advice, one of the nurses tested Don and then said that he was fully sedated. About 2 minutes after that he opened his eyes! The nurses looked at me with that "WTF!!" look. He said, "Let's do this". He got one last big push of meds and I took off the ventilator mask and turned it off. He died peacefully about 15 minutes later at 2:27 pm.
I may or may not use Don's blog to post my thoughts on his life and/or ALS in the future. I am going to play it by ear, recuperate and regroup - Deanna Young