Two weeks ago I got sent home from work for being too sneezy and waxy-looking. We all really like each other at work, but if you look like you're infectious, you are chucked.
I got into my pajamas at 4:15 on a Wednesday afternoon and didn't get out of them until Friday night. By Sunday I was better enough not to be able to move around much, but to be able to do quiet things.
I finished my palliative care modules for work. It takes about 24 hours to complete the certification and I was halfway there. Somewhere buried in the 500 pages of detail about the benefits of hydromorphone use for somatic pain and the hepatic effects of hyperkalemia, there was this statistic: about 10% of people die suddenly, and the rest die after a period of decline and debility. I really didn't know that before I read it.
That was two weeks ago and it sat with me; on the following morning I woke up a little heavy, with some doom, another day also heavy and with doom. Three days ago, heavy, doom, and driving over the bridge on the way to work it came to me why.
10%. 10% of my friends, all the children I know including my own, my family, my parents and friends' parents and older friends. They will go in their sleep, keel over in the garden, drop to the floor. And the worst of it will be the accounting for all of those left behind: what last words were, what was said, what was known, what wasn't. Gratitudes and regrets, as everyone has, but without warning or notice to try to rectify anything or tip a balance. The status of things, at the moment of truncation, satisfactory or not.
In four and a half years I've admitted and helped take care of hundreds of patients. Some for years, some for hours. Every single one of them, as part of my admission, I ask about suicidal ideation. If they can't answer, then I ask and assess for it from someone in the family, or from the caregiver who knows them best. Thoughts, plans, intent, means. Every one of my assessments, the answer has been the same check box: no plans. I have had patients who wished for death to come. Who were ready. Who could articulate, please, I just want to die now. But never have I been asked to do anything to aid them to plan a suicide, or hasten death, or overdose them or stop doing any of the things we as caregivers were doing to take care of their ongoing simultaneously living and dying bodies.
I have had five loved ones and family members of patients in four and a half years who were suicidal, four of whom accepted referrals for care, one I had to track down and arrange to have involuntarily hospitalized to keep safe and give him treatment for an already existing mental illness, and a chance to reconsider, whether in fact he did want to shoot himself with his gun. That was two years ago; I saw him in the grocery store the other day, though he did not recognize me. He reconsidered.
I don't know the average prevalence for a suicidal person. 1 in 400? 1 in 500? I'm lazy; the statistic is somewhere.
When I talk about what I do to friends and family and describe my patients there is sometimes recoil; the very idea of living in a diminished physical and mental state, in a diminished environment, possible meaninglessness, the idea of being trapped in mind and body, and also burdensome on lots of levels. To family, to the fiscal well being of the country. On principle.
The dying of people is hardest on the living left, I believe, who witness them decline, and debilitate, and go. I think the body, as it knows so much and as I teach to my families often, knows what its doing when it dies. Hunger stops, thirst stops, dehydration produces a euphoria and natural pain protection. IV fluids and nutrition don't help a body in multisystem organ failure that is shutting down. It floods it with food and fluid burden that can't be processed: it has to go somewhere, so its vomited, third spaced into lungs causing congestion and living drowning, third spaced into soft tissues causing so much edema that the skin itself begins to weep, and the heart begins to fail under all the strain.
So no. Most of us will not keel over and be spared all that we fear about our respective diminishments. But somehow, I am beginning to think, the body has its inbuilt wisdom, and knows what its doing. It does not spur the mind and spirit to despair, and become hopeless, and suicidal. Has it been studied? Is there a biopsychosocial process that occurs, like thirst and hunger, in the dying process, that allows for a freedom from doom, and depression, freedom from a sense of daily intolerability, freedom from an active and immediate wish for death to come, and all to end. I wonder if you compared populations of the very much living and the close to dying, and matched them for the variables: is there something protective, from some unknown mechanism, that allows for an acceptance, or at least a truce with what is, for the dying. That gives a natural resiliency and acceptance of what most of us say about now, if I'm like that, just take me out back and shoot me.
10%. One gift and one damnation of being around dying people all the time is the prescience, beyond what I think I ought rightfully to know at my age and station in life, of what's to come.
I will likely be old. Chances are, I will likely slowly accumulate this and that, and diminish in many ways.
There are about 10 people in my life, where if I could have my wish come true, I would want to take care of them as they die. I would want the chance to love them in that way, which is unlike any other way I know of loving them so far. Its love when you take care of someone at the end of their life, whether you are hands on or simply present. It is intimate. It is an exchange. I have a picture of a hand holding a crow clipped to my fridge: sometimes we give and receive comfort at the same time. Its an intimacy unlike any other experience in a relationship: I would want that intimacy, with them.
I have another 10 at least that I would want to take care of, for the comfort it would bring them, but mostly because of the comfort it would bring my original 10. Their spouses, their parents they're on good terms with, and I hope never, their child. Even the pets.
And then it goes up to about 30. People who are not my intimates, but who deserve it, and who I would give it for in a heartbeat.
Three of them will drop dead, maybe. 27 I would have a chance at, to give my love, in this way.
Except I will be old too. And have debility, and decline. I won't be who I am now. I won't get to, in all likelihood, love them that way. A few perhaps: early onset of something, bad genetics. And who will accept that love from me, because its a shared thing, not something you do on someone.
So on the bridge the other day, that was that. My own anticipatory grief. For what I won't be able to do, for what I won't be able to give, for who I will not be able to go to.
I would know what to do more than most. I would know how to handle contracted hands, and have a laugh, and be in that moment, that day, and be quiet, and reminisce. I would know the people I love so well and also have all this experience and practice and be able to combine them and do wonders for my friends and family that I love so much.
You accept the things you can't change. I can't change that one. I don't wish any of the people I love so much an early onset and decline, just so I can love them up that way, express how I feel about them in that way. I have to trust them: we will all do our dying, and the people I love I will have to have trust in, and have faith in, that they will do their dying to the best that they can, without me. With what they've got, at that point in their lives. It gives me comfort that in four and a half years, something protective I can't name and don't understand, is activated, and slow long drawn out dying over years or months is not experienced by patients as a horror show or damned fate, but as somehow, simply mostly OK.
None of my friends would probably understand or know why I have anticipatory grief for the fact I will not be able to give them all the love I have for them. That I'm a little sad, and sorry, that I won't be able to offer and give and engage that part of our friendship. That's my prescience, for someone my age.
I wish I could. I wish I could take care of your contracted hands, fragile skin, tell you the truth, love you that way.
Louis C.K. was on NPR, and Terry Gross said, Louis, you seem to see the world as this incongruous mix of terribleness, absurdity, and beauty.
I agree.
