The end of John’s cancer journey has been more joyful and painful than I ever imagined it would be. He hasn’t eaten in over two weeks and is down to around 100 pounds. For the first 10 days or so that he was on hospice it was almost like a big, amazing goodbye party, with people coming to visit, laughing, eating, and most of all loving on him. He sat in the middle of that party smiling pretty much non-stop. We had to almost force him to rest and sleep now and then because he didn’t want to miss anything.
He came upstairs and slept with me every night until Tuesday morning. It was important to him that we maintain that sense of normalcy even though he was in the hospital bed during the day. The last three nights before we stopped that, it got harder and harder for me because he was up every hour, needed bandages changed, his feeding tube drained, and sometimes changes of clothes and I just wasn’t getting enough sleep to make it through the emotionally and physically draining days of taking care of him and trying to work here and there when I could.
I finally had to surrender to the fact that I couldn’t keep going with no sleep and I asked for help. I knew that meant he wouldn’t be coming upstairs again, so it was a really tough decision for me. He started sleeping in the hospital bed downstairs at night and his brother and kids stepped in to take night duty. I had to relinquish control and trust others with his care for the first time, which has been really challenging.
The thing is, I’ve been his sole caregiver since he was diagnosed. It’s been two and a half years and sometimes a full time job. I’ve realized in the past few weeks that it’s defined so much of my life that I’m not sure who I’ll be without it. His needs, his care, especially in the past four months or so, have taken much of my time and attentions. That caregiving has woven itself into my daily routine. I realize that once he’s gone, there will be a huge chunk of my purpose that will go with him.
I’m not gonna lie, it will be a relief. I’m not a nurse (and I have a lot more respect for those who are after this experience) and I won’t miss a lot of the things I’ve had to do as his caregiver over the past months. But there will be a void. I literally don’t know what I’ll do with myself.
The past four days have been like a roller coaster. He started having more pain and being out of it more than with it on Tuesday. That night he called us all together and told us he thought he’d be going soon. He said he really didn’t want many more days like that day. He told us how much he loved us and that he believed, somehow, once he passed he’d be able to watch over all of us all at once. We all cried a lot and hugged and told him we were okay and that he could go, that we’d take care of each other.
The next day he was sleeping a lot and then, out of the blue, decided he wanted to go outside. We carried him out to the back porch and he sat breathing the fresh air. He was laughing and happy, but told us again that night that he felt his time was near. Friday was the worst day of all and he was very lethargic and not even present all of the time. Sometimes when we would talk to him, he didn’t track and we had to really prompt him to respond. I thought it would be last night.
Early this morning he started to become restless and started telling us, when he was coherent, that he was sad because he was going. It’s been a super hard day, wondering how much of his discomfort is anxiety and how much is pain, and trying to manage both with medications to sooth him, mind and body.
He doesn’t close his eyes the past several days, even when he sleeps, so it’s hard to know where he is. He’s been such a communicator his whole life so to not know what he’s feeling or experiencing is a real challenge. We want to help him but don’t know what’s going on and he can’t tell us. I believe he is fighting transitioning because of all the love he’s receiving and he feels for us. He just can’t let go because he’s still holding on to being here for us even though we’ve all told him numerous times that it’s okay to go and that we’ll be alright. He is here but not really and we’ve all said goodbye and that we love him a hundred times at least.
It dawned on me today that the greatest lessons he’s taught me have been about patience, and he is the most patient person I know. He will wait patiently (and ask us to do the same) until the time is right and he’s ready. All I want is a peaceful transition when the time is right for him but selfishly, I’m ready for this ride to end.