After a few trips to the hospital, mom got Todd enrolled in a hospice care program. So, the next time he got sick, he would skip the hospitalization and the stuff that goes with it. Instead he would receive extra grooming, time with a chaplain, additional nursing care, morphine and oxygen. His time in hospice was brief- the next go around came in less than a week.
I got a call from Matt: “Todd is not well; doubt he makes it through the night.” No idea why, but I really had to be there. I got it together and arrived at Matt’s that same night. I did not sleep well. The next day, we got over to the nursing home: he looked pretty rough. He wore a full-face oxygen mask and his breathing was shallow, rapid and coarse: every breath was a struggle. I had never seen anyone die, but I did not think that anyone was strong enough to do this for long. We all sat in the room, taking turns sitting at the bedside. When it was my turn, I told Todd about all of the good things. It was not a very long story. My relationship with Todd had never been great. Still, I kept it straight and felt like it was the right thing to do.
We all sat for a while then went back to Matt’s, expecting to get the call at any moment. The next morning was a Sunday, March 21, 2010, the first day of spring and surely, the end of the road. I got to the nursing home early. He was still with us, but not in good shape. Somebody came in and cleaned him up. It seemed better to die clean shaven with no spittle on your chin, so this was good. The hospice people were around quite a bit that day. I liked what they were doing. At some point, the heroics just did not make any sense to me. Give a body some dignity.
He slid further. Mom and Matt were out making arrangements. I had no responsibilities, so I hung around. It got pretty bad, so I called Matt and mom back. From where I sat, he was checking out. I had never seen someone die, though, and was not familiar with the process. Turns out, he still had a few hours left in him. Mom decided it was too much for her and she needed Matt to take her home. I still could not understand why I was motivated to be there, It was confusing, I just knew it had to be.
Soon enough, Todd really slipped. Most times, I am calm. But by now, I was not. It looked like it was going to be just him and me. I needed help. For whatever reason, Todd held on until Matt returned. So here we all were, for the final episode.
It seems hard to die. His legs got these mottled purple marks- the nurse said that this is the signal. Then his breathing got real irregular. I would think that he was finished, then he would manage another breath. Finally, it was over. For whatever reason, I was pretty much at peace, and for reasons I surely do not understand, was pleased that I could share Todd’s death- the third in my family to be claimed by X-ALD.