Life Choices

10922340_613330648797022_7735166021165864707_oFirst 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.

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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.

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6 Comments

  1. Cindy Taylor May 16, 2015 at 10:29 am #

    This was a post from your heart, and my heart goes out to you in return. I don’t think any of us are truly ready for a decision such as you had to make, and you have definitely opened my eyes to one aspect. My husband and I have also discussed the issue of life support, but I have never considered the fact that the other person could be awake and aware of what was taking place – to have to tell them that you are making that decision. You have given me something to think about, Take care and remember your wife is at peace now, and that’s the most important thing of all.

  2. Michele Lash May 16, 2015 at 1:38 pm #

    Thank you for sharing a truly personal situation. I have no idea how you have dealt with this all these months. But you have shown such strength it continues to amaze me. Like you, Jay and I have had this conversation and know that we don’t want our lives to be extended artificially. I cannot imagine how I might feel if I have to act on that promise, but knowing what his wishes are, makes me feel better. God bless you as you continue on this new path of your life! Jill is watching over you and is at peace.

  3. Halane Cummings May 16, 2015 at 7:47 pm #

    Tony,
    This brought tears to my eyes. First because I know how much you and Jill loved one another. Anyone who was with the two of you could see and the dedication that both of you had for one another was strong.
    The second was because Phil and I have had similar conversations and like you, it feels like knowing their thoughts will make that decision easier when the time comes. But it doesn’t. We had to make a decision with Dad to treat him for a medical condition or to let it continue with comfort care knowing that it would be the end. Dad had grown so weary at 94 and wanted to be with Mom; he had made it known to use many times that he was ready to go.
    We decided to go with comfort care, but he quickly slipped into a sleep state that continued until his passing. I too felt that I wanted to have that conversation with him and perhaps have him tell me that he was fine with this final decision. I know in my heart it was right, but I still feel conflicted.
    Tony, you know you have the love and support of so many. Your words have brought me comfort knowing that others have felt the same and for this I thank you.

  4. Jane Fetty May 16, 2015 at 9:43 pm #

    Tony, I hope that in writing this you are able to achieve some closure to what was probably one of the most diffcult decisions you will ever have to make. Kent and I have also had similar conversations, but as others have said, I’ve never thought about the other person being aware of the decision being made. You know you made the right decision. I hope that your dreams begin to be of what can be, not only of what has been. I pray for you almost every day and know that you must feel a tremendous emptiness. Jill truly loved you and how wonderful to have felt that love – but it leaves a great emptiness. I hope you know how many people care about you and pray for blessing upon your life.

  5. Maralee May 18, 2015 at 11:55 pm #

    What an emotional post. My heart goes out to you. You know in your heart that you made the right decision. My husband and I have both discussed this issue although I know that talking is much easier than doing. We had to make a similar decision for my mother last year. My biggest fear was that she was afraid. She knew she was dying. When she told us she was not afraid that lifted a big weight off our shoulders. She was alert almost to the end and it was very difficult but I know we made the right decision. My thoughts are with you.

  6. John Wagner May 19, 2015 at 12:45 pm #

    Thank you for the insight. Your trial will serve others in ways you cannot imagine.

    God bless..,

    John

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