The Queen of Bohemia is now under hospice care.

There. I said it. It is freaking me right out and keeping me up at night, this little fact, this single simple sentence. You see, I did it, or rather I sat there at a table with helpful, kind people who said to me gently, we think it is time to call hospice. “They’re so nice!”  they said enthusiastically, “And they will help.”

“But there is nothing wrong with her,” I protested, knowing that this was not altogether true, although there is nothing, really, that you can put a finger on, or get a blood test to verify. Nothing other than the dementia that has taken a crashing turn for the worse in the last six months, and then the way she says that her legs don’t work.  She falls a lot, now, which is one of the big reasons we moved her to assisted living, where everybody is very nice and calls me every time she falls. That’s how I know that she falls a lot. A very lot, in fact so much that I suspect her of doing it on purpose, of using the toddler logic that is all that is left to her: they made me move here because I fell down, ergo, if I fall down some more, I will move again. Falls = moving and she wants to move, to go home. Home to Greenwich Village in 1955 or Mallorca in 1975 but not really Asheville in 2015, which she has already forgotten. I sympathize. I also would like a time machine: I want to be 20, 27, 35, even 42 again; I too want to move. I do not like this life right now and the choices I have to make.

Yesterday she told me that she had forgotten she was a famous artist and it was great to be reminded. “All you have to do,” she enthused, “Is draw anything, any little thing and you get a million dollars! You should try it!” and then she laughed for a long time. She also complained about everything being too American. “Americans,” she said darkly, “Everywhere. And they keep pounding it in and pounding it in, Americans.”
“Yeah,” I said, “You are kind of surrounded by Americans, it is true. That happens in America. Awful, isn’t it?”

So. This is what has happened: she has more or less stopped eating. She had basically stopped before the big move, but now she is just not interested in eating anything at all, even things that she used to like, even grapes or pie or ice cream. This means, the hospice people say gently, that she already has some malnutrition and her body will start breaking down soon. It means, they say, that she has decided on some level that she is ready to go.

It could just mean she’s on a diet, I think – I know sometimes she still worries, fucked up but there you have it, women at any age from eight to eighty six: I’m so fat! I must diet! I just won’t eat tonight! So it could be a diet. Or she could just be not hungry, right? You don’t need much food, when you’re old.  I think these things but I don’t say them, because this diet is up to me: if I want, if I issue the orders, she will get fed whether she likes it or not. An Ensure army is waiting in the wings to keep her going. If I say so, an aide will sit there and feed her, turn her head to accept the spoon, make her drink the liquid nutrition and then, I guess, eventually the feeding tube.

What do you want to do? they asked me gently. You hold her health care power of attorney, when she was still coherent, or, well, more coherent than she is now, she trusted you to make these decisions. You hold the MOST form that spells out how much treatment is too much: do you go to the ER? Do you get a feeding tube? Do you get an IV?

No, I said, no spoon, no Ensure, no tube. If she sits down in front of three good meals a day and a snack or two and doesn’t eat them, it’s her choice to make and not mine.  But you see, it isn’t, because she doesn’t understand choices anymore so I must make them for her. And I don’t know, so I can only do the best I can, but it doesn’t feel like enough. But I do not believe that life is always the best option. I never have. Yet I don’t know, for sure, that she feels the same way. I think she does, or did. But I don’t know and so I wake up in the small hours and think, oh gods, oh gods, what am I doing? Do I have this right? Who died and made me god of this small world? What if I’m wrong?

I know that I would not want to live in the state that she is in now. I know that my mother, her sister, was adamantly and utterly opposed to staying alive past the point where you need other people to care for you, where your mind or your body has gone. I know that my whole family has a horror of losing our independence and to this end I sat and watched my father die at home, no feeding tube, no water even, three long and terrible days. I stopped the doctors – or tried to stop the doctors, easier, it turns out, said than done – keeping my mother alive too long and when it was time I sat with her and watched her go. I know that Annie too has lost friends and lovers and seen ghosts and all in all been comfortable on some level with this ongoing cycle, this life and death thing. I don’t think she would want, if she could see herself now, to keep going much longer. But did I ever sit down with the QOB at the Chelsea Hotel in 1988 and say, well, OK, Annie, just suppose that in 20 years you have a stroke and you get dementia and I have to take care of you, at what point do you want me to, uh, figuratively pull the plug? How do you feel about life with dementia?

We never had this conversation. Mostly we talked about boys and art and shoes – they should be simple but breathtaking – and sometimes apartments. “It’s such a drag, Lisa,” she said, passing me the joint, “That you don’t have enough bread to get a better pad.”

So I don’t know what she wants. But I have to make the choice and I said, ok, bring in hospice, thinking they would say, oh, she’s okay, this is silly, she isn’t dying. Instead they said, well, she meets our criteria and since then there have been kind and helpful people abounding, changing her medications, visiting her, calling me to ask kind and thoughtful questions. I asked for a lama and the Tibetan book of the dead and prayer bowls and that is going to happen, which kind of surprised me. They seem to think she is dying.

“What if she isn’t dying?” I said brightly, “What if this is all just a colossal joke?”
“That’s fine,” they said soothingly, “if she’s still alive in six months she will just be discharged.”

So now I feel like it’s a fraud and that worries me too. She can’t be dying, I think, not the QOB, this isn’t happening and even if it is, I didn’t make it happen. But what if I have set this machinery in motion? What if she is actually dying? What if she isn’t? What if I have made a terrible terrible mistake and she wants the spoon, the tube, the Ensure, the wheelchair, the slumped and terrible, silent figure in the hospital bed?

I know, or I think I know, that she doesn’t. And I do not believe in the sanctity of life over all things: I believe in death as a release. When it comes my turn, I want to die, as quickly and painlessly as possible and my kids and my friends and now you have been notified of this wish. No spoons. No Ensure. No tubes. But an overdose of heroin would be taken kindly. I can’t do that for Annie but I can do the other. I think it is the right thing to do. I think it is what she wants.

But I still can’t sleep through the dark hours.

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1 Response to Decisions

  1. I hug you. I have read this and I send you love. You have done all the right things. Rest easier if you can.

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