First I’ll get the photography stuff out of the way. This selfie was taken by me on my Windows Phone, and edited there with Photoshop Express. It was taken January 26 in a waiting area at St Luke’s Hospital in Cedar Rapids, Iowa, next to a large window on an overcast day, and from a lighting perspective I was really pleased with what I could create with nothing but window light and a cell phone.
Now to the story behind the expression I’m wearing.
I’ve been having disturbing dreams lately. Nothing much happens in them. My wife is alive, usually in a wheelchair, and I am visiting with her and pushing her around. She is happy and content to be with me.
That sounds like a lovely dream, actually – and it is, to a point. But there’s a subtext to it that only I am aware of. In these dreams, Jill survives when life support is removed at the hospital. She lives and enjoys her life. And that suggests, to my subconscious, that I made the wrong choice when deciding to end life support for her. It suggests there’s a part of me that believes I gave up on her too soon, that I should have believed in her more strongly and she would be with me today.
Now, none of that is really true. I know that I made the right choice, and the dream doesn’t really stem from self-doubt. It stems from the fact that the circumstances around the choice I made were nothing like I’d ever imagined. So I’m writing about it here, both as a kind of catharsis for myself, and as a bit of advice to anyone who might read this.
My wife and I always understood each other’s wishes about life support. It was one of the earliest discussions we had as a couple. We continued to have the conversation off and on throughout the years, informally. It was not a subject that we dwelled on, but we did our best to make sure we were absolutely clear. The short story, for both of us, was “Don’t do it.”
My wife’s health was always generally more poor than my own, and I always knew that I was more likely to have to make a decision about life support for her than she was for me. It wasn’t a prospect I enjoyed at all, but I was confident that I was prepared for it, that I was clear about it, and that if it came to it I could make the decision with confidence and without regret. I would regret her loss, certainly, but not the choice that had to be made.
As it turns out, I was dreadfully mistaken. I wasn’t prepared at all. The circumstances turned out to be very different than I’d imagined.
When thinking about telling a medical staff to remove life support, I’d always envisioned a state where my wife was unconscious. Comatose, perhaps as the result of a serious accident or complications from other health conditions. If not completely unconscious, then barely cognizant of her condition at best.
As it turns out, when the decision had to be made, Jill was awake, aware, able to communicate in a limited way through small gestures and expressions. She could laugh at jokes, squeeze my hand, and her lovely, expressive eyes told me all I ever needed to know of her love for me. She was, actually, quite capable of hearing, understanding, and answering the question, “Do you want to have life support removed?”
Nevertheless, it was made clear to me that the decision lay solely with me, and that it would be immensely inappropriate to seek her thoughts on the matter.
I understand why. By that point she’d been in the hospital most of a month, and much of that time was heavily sedated, beyond her memory. She’d been warned by the doctor that when her breathing tube was removed they weren’t sure what would happen, and that she might die. But more than 12 hours passed and she was still breathing on her own. It’s entirely plausible that she felt she was on the road to recovery, that she had escaped a close call. I’ll never know, because she never really regained the ability to speak.
But she was not recovering. Her blood pressure had to be kept high through medication, and her blood oxygen was dangerously low. The dialysis team came in the morning, and I had to make a choice, quickly. Knowing her condition, I sent the dialysis team away, and sat down beside my wife.
Jill, a theater major, was the consummate actress to the end. She looked at me with her large, lovely eyes, but kept herself expressionless. I don’t know if she felt fear, disappointment, resentment, relief, or confusion. I told her I’d sent the dialysis team away, that we weren’t going to do that anymore, and we were going to focus on keeping her comfortable. She understood what I was telling her. But there was no expression.
No, that’s not true. There was, in her eyes, the love I’d always seen there, all our lives. But no hint of a reaction to the decision I’d made.
And that was that, really. She was whisked away to hospice, and she was surrounded by her family, and I rarely left her side. But I don’t know what she felt.
That, dear reader, is the genesis of my dreams. Not that I fear I made the wrong choice, but that I wasn’t prepared to have to make the choice and tell her about it. And, having told her about it, not having the chance to talk about it, to hear her reaction, to get her affirmation that she understood, and it was all right.
Have this conversation with your loved ones, now while it’s possible. Understand that it’s not simply that this decision needs to be made, but that you might actually have to tell your loved one you made it. Make sure your loved ones understand that if they need to do the same for you, that you understand, support, and love them, even if you’re not able to say so when the time comes. They will cherish those words at that moment, hold on to them desperately. Those words may be what sustains you or them through many long months.
Please do not pass up the opportunity.