As posted through today on my blog, and will continue to be updated there.
I am at a 2 day training this morning, sitting in a lonely hotel with just the TV for company while my companions partake of the meager offerings of the continental breakfast. We were in the basement of a hospital all day yesterday, so this morning I checked my phone messages.
The message I received was expected, and yet it still took my breath away. My Uncle, who fills my memories with light and love from the time I was small, is being taken off of everything but his ventilator and being moved to a
hospice center today.
We were hoping he could go home, but I guess that is not the case. I know he chose this, and he needs the peace, but I am not ready. I don't think any of us are. Like my other
Uncle, he is still all there mentally. He is still my pun-cracking, super intelligent, wonderful uncle who puts up with my political leanings and has always been there. I am so much closer to Jay than I was to Rusty. I remember riding around town on the back of his wheelchair and taking him to school for show and tell in Kindergarten. He is a part of who I am.
His kidneys, however, have failed him. Now his heart is taking his kidneys' lead. He has not been home since last June, being shifted between ICU, speciality hospital and long term care. He was on a feeding tube, vent, and dialysis. He is missing his grandson growing up. He is in pain and so very tired. I just wish he could come home, although I don't know what was involved in the decision-making yesterday.
Finding hospice that would take him was another issue. Like my other uncle, Jay is unable to breath without a vent thanks to
Muscular Dystrophy taking his lungs. Hospice providers classify the ventilator as extradorniary life-saving measures, but if we take him off, we are instantly letting a very cognizant man die. I don't know about you, but I can't do that. When they move him, they will be leaving the vent in, but stopping the
dialysis and the feeding tube.
We will probably loose him within the week.
The grief is already starting and we haven't even lost him yet. I didn't even realize that I was holding out the hope that he would pull out of this latest medical crisis again. I know it is inevitable, and that we have had far more time than we were "supposed to" have with him, but I am just not ready. None of us are, except for Jay. And he is the one that counts.
....The Odyssey of Love:
The hospice Jay's at is named Odyssey, which is very fitting for a journey of this magnitude. I am sitting with other family, and there is a sense of anticipation. Sometimes we laugh, sometimes we cry, and right now everyone is sitting in quiet contemplation, each doing a different activity.
I hunted up the WiFi connection, Chris is playing Tetris on his cell phone, Aunt Susan is reading, and Mom is working on a baby blanket. Every once in a while he skips a breath, and we all pause and look up and check on him. There has been a steady stream of visitors tonight. We have sat and talked to him, and held his hand and been here as a family.
The staff is awesome. A nurse just came in and they are so respectful. She touches Jay and lets him know she is there and what she is doing, even though he is not conscious. They keep reminding us that the hearing is the last to go, and we are doing our best to fill the room with love, laughter, and companionship. The staff is very attentive to us as a family, but especially to Aunt Susan.
She hasn't had Jay as long as we have, and it isn't fair. Life is not fair, unfortunately and the best we can do is just keep going and celebrate what we have. Grief is a complicated process and so individual.
I am grieving too. I keep having memories of my uncle pop up suddenly. ..
I remember flying through the streets on the back of his wheelchair, and how he always let me push the buttons on the wheelchair ramp. I think to all the times we have almost lost him in the last six months, and it is hard to believe that he is not going to suddenly open his eyes and ask to go home now. He was my example of self determination, dignity and independence through disability.
He is my Uncle Jay. Peace and love. Peace and love.