***WARNING – THIS POST MAY BE A TRIGGER FOR SOME***
Five months ago today, I was told doctors wanted to have a family meeting. Five months ago today, I made Katie & Adam & Kathy come down with me to meet with the doctors and figure out what needed to happen with Mark.
I had spent the previous night in a panick – one nurse casually mentioned to me that the docs wanted to talk to me – that Mark was refusing care.
I had not seen Mark since Thursday. I don’t remember why I missed Friday, Saturday was a derby bout, and Sunday was a beautiful day with traffic… I didn’t want to sit in traffic with the boys for 2 hours. So I didn’t go for 3 days. I think, out of everything that happened over the 5 1/2 months he was in the hospital – that weekend was my only regret.
If I could go back and redo that weekend – I would have been there on Sunday. Friday too.
The previous month, three weeks, I don’t know exactly how long, had been full of ups and downs. Lactaid levels had gone dangerously high, so high that the doctors described it as being “not compatible with life” but he kept recovering. Doctors found and controlled a bleed, but he kept having dangerous dips. His insulin levels were stabalizing, his kidney function was stabalizing, but he couldn’t get off the ventilator.
That morning, we met with the doctors. Mark was clear, alert, and very much himself, and the doctors explained to us that Mark wasn’t getting any nutrition. The TPN feed (intravenous) would kill his liver, and the tube feed was leaking out his gut and out one of the drains in his stomach. Essentially, he was starving.
Without nutrition, his body couldn’t repair itself.
He was starting to refuse care. He wouldn’t allow nurses to clean him up, or to change bandages, or to do just about anything… Even when I got there, he refused to let me help.
The doctors explained it all very clearly. How the only hope for nutrition was an experimental TPN from the UK – that they didn’t know if they could get it or how long it would take to get it, but if Mark had another dip like he’d had last week – that it would be doing more harm than good to bring him back again.
Mark said he wanted to continue to fight. He was very clear about that. He wanted to get better, he wanted to come home. He wanted to keep going.
We told the doctors this and they went in search of the experimental TPN and his nurse provided exceptional care and support for us.
In the afternoon, Mark told me he wanted me to take him home. In the past he had asked to be taken home, but when I explained to him that it meant he wouldn’t get better, he’d agree he was better off in the hospital.
This time, he was insistent that I take him home.
I explained to him, gently, with love but very clearly… If I took him home, he would die. He repeated to take him home. I asked him if he understood, that if he came home with me, he would not survive, he would die. He told me that yes, he understood, that he wanted to go home.
I had spent 5 1/2 months fighting to keep him alive, but always cognizant of his choices and his desire. My overriding policy for every single medical decision I made was… keep fighting until HE said he was done. Until HE decided that he was done fighting or the doctors couldn’t do anything – we would continue to move forward with the expectation that he would get better and come home to us.
He decided he was done. He decided he was done fighting, that he wanted to go home, and that he was done.
So I told the nurses. I told the doctors. I told the Facebook community. I started gathering friends and family around. I sent Kyle money so he could be there. I had friends come down to be with me, because I was not leaving Mark’s side that night. I had friends come from different parts of the province.
His primary care doctor had a conversation with me about putting pressure on Mark to try harder, wait a little longer, to push that much more. I told him that I understood what he was saying – but that I knew my husband. I knew my husband would fight until he had no fight left. His doctor was ever the optimist.
Naomi & Adriana were there in the evening. Kyle arrived by bus around 10. He played his guitar and sang for him, while Adriana and Naomi and I sat outside with Robert (such an amazing nurse).
I spent the night in a chair at Mark’s bedside – we “talked” and I cried, and he held my hand and stroked my hair. He told me he loved me. He told me everything I needed to hear, and I hope I told him everything he needed to hear. I did ask him, at one point… if I asked him to try for just one more week. 7 little days, would he? When he said no, I understood that he was firm in his decision. And I was ok with that.
You have to understand… this is a man who loved me so much that he would do anything in his power to make me happy. He would do anything he could to fulfil my wishes and wants… He frequently put me first above his needs. In our wedding video – he says “You make me happy. I want to make you happy” and that’s what he did. He tried to make me happy. So when he said he was done, when he knew the pain it would cause me and our family, and he still was done fighting, I knew that he was truly done. I knew there was no changing his mind. And I love him enough to accept and support him in that decision.
Not everyone gets the chance to say everything that is needed. Not everyone gets the opportunity to say good bye. Not everyone gets to hold their husband’s hand and love them fiercely when their husband tells them that he doesn’t have any fight left in him. Not everyone gets that… I did.
I just realized – Christmas Day will be exactly 6 months since decision day. Exactly 6 months. I’ll worry about that in a month.
Today? Today is the memory of 5 months ago. Today is the memory of tears. Today is the memory of having to gather friends and family to come say goodbye.
Today it’s been five months.