It’s starting to sink in that I’ll have as much influence on the end of my mother’s life as she had on the beginning of mine.

The things I have to learn along the way — figuring out our Kafkaesque medical system, learning what health professionals will say outright and what you have to read from their tone, trying to determine whether she is “trending toward end-of-life,” as the current jargon goes, or whether she could regain some quality of life – all of that is vaguely reminiscent of the learning curve of parenting an infant, with its “Oh shit, I have no idea what I’m doing” overtones.

But it’s harder. The learning curve is quicker and steeper, and the inevitable loss more compressed and far more complete than the 18-year pull cord on raising a kid.

And it turns out that I am undone by my own humanity during my project as much as she was during hers. Sometimes it seems that an imperfect human can’t possibly be up to the task of making the last period of an elder’s life as positive and meaningful as it can be. Yet I look around, and I see only my sister and me. There is no one older, wiser, less susceptible to things like emotion, grief, and physical and mental exhaustion.

Example: My emotional expression is unreliable. Sometimes I can access feelings, and sometimes I can’t. Then at other times, it’s not so much that I’m accessing emotions as being mugged by them after turning a blind corner. This means that when someone else is breaking down, crying and emotional, I’m often stone-faced and locked down. I feel somehow that I should be emotional too, but it isn’t there. I’m in intellectual mode, as I sometimes must be to make judgments and ask questions. But it feels odd, and can’t switch out to be in the same emotional space as the person who is in their feelings at that moment.

But then, the first time the social worker asks my mother who is sitting next to her, and she doesn’t recognize me or my sister, I will have to abruptly leave the room to handle my tears, and my mother feels bad because she knows she got it wrong.

That one was a mugging.

And sometimes it means that when the surgical consult is next to her, and he leans in to hear her hoarse whispers, and what she’s saying is “Get out of my face,” I will burst into uncontrollable laughter, and then the surgeon will crack up, and so will the medical student, and even the nurse might crack a grin. My laughter, though, goes on too long and dissolves into sadness, because it all emotional roads lead to the same destination here.

I also have to sleep after every visit. It’s usually only a 15 or 20 minute nap, but it’s an overwhelming need. I have no idea what that’s about; I’ve never been much of a napper.

And then there are the judgment calls. What if, in my fear, I make a decision that drains her spirit and blunts any remaining meaning in her life? What if, in my desire to avoid that, I give up too quickly? All these decisions are like balancing on the edge of a knife.

Remember that scene in the movie Parenthood where Keanu Reeves’ character says, “You need a license to buy a dog, or drive a car. Hell, you need a license to catch a fish. But they’ll let any butt-reaming asshole be a father.”

You mean I don’t need a license to make decisions that influence how my mother spends the rest of the time she has left? Am I qualified to do this?

It could be the perfectionism that lurks everywhere else in my life, but I’m tempted to find this woefully inadequate, much in the same way Tod in Parenthood was so dismayed at the lax requirements for fatherhood. So I’m doing what I did the last time I felt this way, in order to promote myself from “any butt-reaming asshole” status. Before my son was born, I read everything I could about parenting. These days I have Atul Gawande’s Being Mortal on audio. I consult nurse friends. I ask doctors questions in different ways until I get the information I want.

But jeez. In the end, my sister and I have decisions to make that are every bit as grave as the ones Mom made for us were, and they will be made in an imperfect environment, by imperfect people. As in parenting, the only thing we do is the best we can do, given the circumstances constraining us.

There is only what she wants and would have wanted. There is no objectively correct answer, and therefore perfection and security that we “did the right thing” will always be elusive. As it happens, I am the only “butt-reaming asshole,” along with my siblings, who knows my mother well enough to approximate her wishes. And she trusted my sister and me to do it. Her signature is right there on the document, executed four years ago. She told me about it at the time – at lunch, I think. I nodded then, completely confident in my own competence.

Her confidence, and the symmetry between the things she did for us and the things we do for her, is all we have to go on. It’ll have to be enough. It was enough for her.


6 thoughts on “Do I need a license for this?

  1. I’m so sorry. I imagine it is overwhelming most of the time. Our health care system is complicated enough even when the end result isn’t inevitable. Such hard decisions. Such emotional decisions. I wish you and your sister and your mom as much peace as you can find among all of this.

  2. This is a hard road to navigate, no matter who you are or who you’re walking next to. You have my empathy. I traveled this road three times, all told. It doesn’t get smoother with repetition.
    I am fully aware that words are totally inadequate, even if the feelings attached to them are real and sincere. All the words in the history of language won’t change the course of events to come. Nor soothe you through them.
    Still, I am sorry you all have come to this crossroads. I wish you peace in your decisions and comfort in the days ahead.

  3. This is so real and so raw that I ache for you. There may be some lingering doubt but you are right when you say that you must do the best you can with the knowledge you have now. I hope you can find peace for all involved but most especially for your mother. Prayers and peace.

    1. Thank you. You’re probably right that there will be lingering doubt, and if I try to make a decision that won’t produce any, I’ll go nuts. Some of us are born doubters. [Raises hand]

  4. Hold tight to your sister and trust yourselves – you will make the best decisions you can – in that moment – on that day.
    That’s all any of us can hope to do.
    With love to you and yours at such a hard time ❤️

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