I vividly remember this day last year. After nine months of traveling back and forth to hospitals and doctors, it was finally Ben’s last day in hospital. Ever.
The day before (January 5th) while I was at home with the kids in the middle of the night, Ben texted me and said that he didn’t want to die. I’ve been torn up about that text ever since. It hurts to know that he was awake while everyone else in the world slept peacefully, and he was thinking about how he didn’t want to die. How I wish I had gone right back to the hospital at that minute. How I wish I had never left.
I know at the time it was impractical to think of staying at the hospital overnight. By this time last year Ben slept far more than he was awake and there was nowhere for me to rest. Ben was not in hospice – he was just in a shared room with some guy who snored a lot. Someone needed to be home for the kids and I stayed with Ben every second that I reasonably could. But in hindsight I wish I had been there with him when he woke up that night and started reaching out to his loved ones via text and saying goodbye. That may be a peaceful thing to do for some who have accepted that they are going to die, but Ben had not accepted it and he had not made peace with it. Ben was still fighting for his life, so the fact that he was saying goodbye “just incase” must have been terrifying for him. I wish I had been there, but I do find some solace that despite having moments of clarity, Ben was predominately foggy due to medication, so he didn’t necessarily dwell on thoughts because he couldn’t retain them for long. I’m glad for that.
On the 6th of January I stayed at the hospital with him. Its funny because I remember some of that day well, but I have no recall of other parts. I don’t remember where the kids were, but I remember that my parents and sister were there for what seemed like the entire day and night. Of course they were. They always were. But they couldn’t have been there for the entire day because the room wasn’t big enough and I do recall there wasn’t enough seating. Still, I recall them there for hours and hours. Maybe it was. Maybe that’s when Lisa came back over from the Island. I’m not sure.
I remember Chris Thomas texting me on January 6th … scared because Ben had sent him a confusing text in the middle of the night and then when Chris responded he never heard from Ben again. I remember telling Chris that Ben was dying. That there was no more treatment for him and I was waiting to take him home. How terrifying that must have been for Chris because he was also dying at the time. He asked me for our address because he wanted to send something to us, but he died before he could. I have no idea what it was.
I remember that Ben was speaking in a whisper this day last year and he slept a lot, but when he was awake he just wanted to leave. He wanted to go home. He asked me where his “stroller” was. He was referring to his walker, and when I told him it was in the car he said “that’s not very convenient.” Haha. Even when he was dying, he was still funny.
He was frustrated by the fact that we had to wait for hours for any EHS attendants to be available to help bring him home, and I deeply regret that we waited. I thought I needed their help to get Ben inside and get him upstairs, but instead I wish I had just called on several of his friends and asked them to come get him and bring him home. I hate that he was stuck in hospital because he did not really understand why he was there.
In this video clip there was a nurse in the room. When she turned her back, Ben mouthed the words “I want to go home,” followed with “This is ridiculous. I love you too but I want to go home. I want you to drive me home NOW.” At the end of the clip he is just making faces. He still made me laugh.
It was after midnight before I got him home, and the EHS attendants were rather assholish. They were clearly annoyed that they were being utilized to bring a dying patient home, and I wish very much that I had told them exactly what I thought of their lack of compassion. I wish I had reminded them that someday, one way or another, they would be in exactly the same position. But I didn’t have the energy at the time – I just wanted Ben home. I knew he was coming home to die.
I don’t remember what happened on January 7th in the day time. I imagine I just sat around with Ben and took care of him as best as I could. The Home Care nurse probably came, and I remember Ben liking the attention of the first young one, although he did fall asleep while she was here. I think my sisters were here. I know my parents were. I know that various friends came in and out and I know I just started keeping the front door unlocked so people could walk in and out freely when they wanted. I didn’t have the energy to keep getting up. I remember that Ben did not want to be stuck upstairs and so we helped him down to the family room. I was scared that I wouldn’t be able to get him back upstairs where he could shower and sleep in the bed. I remember Lisa saying, “If he has taken his last shower, so be it.” So we helped him down.
I very clearly remember that Dr. B visited Ben at our home that night. I remember that Ben had a coherent conversation with him and asked him, “Am I going to die?” That was the moment Ben believed. It was also the last time that he spoke of death. He spent the rest of his remaining days having visitors come in and out to play crib, and talk, and laugh. He fell asleep often while people were visiting, and he sometimes said strange things. At one point he tried to show off for Lisa (my friend, not my sister) which startled us but it was funny. He told one of our kids they were adopted. (Not sure if he was joking or if he believed it after all the years of joking that Raegan didn’t look like anyone in the family). I don’t think he actively worried about dying anymore, once Dr. B said it was so.
As I rapidly approach one full year without My Ben, I am feeling a small sense of relief that I (hopefully) will no longer constantly find myself thinking “this time last year ….” Instead of wanting to slow time down, I now want to speed it up. I want this year to be over despite the fact that time is pulling me further and further away from Ben. But since I cannot stop time I want to experience some relief from having that first year over. I want some freedom from the pain. I don’t want to constantly remember that “this time last year the pain was terrible.” I don’t want to remember that I was scared. That the kids were anguished. I just want that part to be over.
This morning I woke up thinking about the number 13. I have always said that 13 is a lucky number for us because it is the day that Ben was born and the day that Raegan was born. I realize that it was also the day that Ben died, but that was also the day that Ben’s pain was left behind. Which is good. I wondered to myself if there was meaning behind all the 13’s, and then I heard Ben say “stop looking for meaning where there is none. It just is.” Ever practical Ben. Maybe he’s right. But then I went to add this song to this blog post and for the first time I watched the video open up. Well, check out for yourself what it says at the beginning. I think Ben was wrong this time.