Argh. This is hard for me to do, but I think it needs to be said — over and over and over again, until it is finally heard. First, I am compelled to share my experience that informs me.
My husband was diagnosed with terminal cancer. A solid 11 months of treatments succeeded in extending his life — but not saving it. 14 months after his treatments ended, my 84 year old mother had a stroke. After her third stroke, Mama came home from hospital, thought it over, long and hard and called to say she wanted to talk to me and my husband.
Trust me, we were not prepared for what my mother had to say. “Royce, you and I are dying, what are we going to do about it.”
Stunned silence. Huge silence. Gigantic silence.
Followed by muscle aching. eye watering, nose drooling uncontrollable laughter. We tried, we really, really tried, but the three of us could not stop laughing.
Laughter broke the stupid facade people wear and enabled us to face the TRUTH. Both of them knew they were dying and both of them wanted to die on their own terms.
Umm, I asked, what might your terms for dying be? Both of them wanted to die at home — not a nursing home or hospital. Okay then, we needed to find out what we needed to do to make that happen.
We did our homework and long story short, here is some of what we learned. The most important document anyone will ever fill out is called an “Advanced Healthcare Directive”. This document will determine who controls your life and death — you can decide for yourself or you can authorize strangers to make decisions for you. But if you do not complete this document strangers WILL make decisions for you. And trust me; strangers will make decisions based on their religion, their political beliefs, their prejudices,their fears and their interests — not your’s.
Do yourself and your family a favor and fill out an AHD now. I don’t care how old you are fill one out NOW. Fuck wills. If you haven’t filled out an AHD, you have no business writing a will.
If you have a senior in your family, ask, insist, beg or demand they complete an AHD. Do not allow anyone to force you to make life and death decisions for them without your permission. An AHD makes decisions people make for themselves clear. Even if they trust you to make those decisions, you will do so knowing they wanted you to — and you will have the legal document necessary to implement their decisions.
When it comes to dying, 90% of people want the exact same four things. They want to die at home. They do not want to die in pain. They do not want to burden those they love. They want to die with peace of mind that comes from knowing they have taken care of those they leave behind.
The author asks a hard question, rather bluntly. But the criticism piled up so fast, because she asked the right question. If you are 60 or older and do not have an Advanced Healthcare Directive in place, you are a selfish, self-centered, spoiled child!
Loving, responsible adults do not burden their children — and society — with dependency. Denial, indecision and procrastination are luxuries. No one earns that kind of luxury. They take it but they do not earn it.
Decide what the heck you do and do not want. The most important question you need to answer, for yourself, is do you want to resuscitated? Before you answer, do you know what might happen if you are resuscitated? Are you willing to accept those possibilities? And I mean all those possibilities including having someone else bathe you, dress you, feed you and change your diapers for the rest of your life? If that is okay with you, do you want your son or daughter bathing you or changing your diapers? If not, how will you pay for a caregiver? Will you agree to go into a nursing home? How do you intend to get someone to take care of you? Can you afford a full-time caregiver?
I will offer you an example. A midnight call, an 88 year old uncle had a heart attack, he is in hospital, he is unconscious, he does not have an AHD, his children don’t know what he wants. His son was visiting and late at night, went to the bathroom and found his father on the floor. Now, they are calling me hoping I know what he wants. Let him go, I say; he has lived independently, alone on his ranch, in the middle of nowhere all his life. He does not want to live anywhere else. If you agree to a pace-maker he will be forced to live in a nursing home. Let him go the way he wanted — naturally.
A pacemaker sounded good, so his children said okay. At least they could ask him what he wanted. Two years later, uncle is being moved from one of his children’s homes to another. He needs full time care. He is depressed. He tells me he wishes they had let him go. He says the pacemaker is keeping his heart alive, but the rest of him is still dying. His dying parts are hurting — he is in constant pain. He misses the ranch — he will never see it again — he is being moved to Kentucky. He dreams of his ranch, he says it was supposed to be his burial ground and cries. He will never hear the wolves cry, the coyotes howl, the cows moo, or the hawks screech again. If he’d had an AHD his children would have let him go and buried him on his ranch. I hang up the phone and cry.
Within six months time, my mother, then my husband died at home, in hospice care. They had no pain. They burdened no one. We laughed and cried and held each other tight. We listened to music, I read their favorite passages, letters and poems out loud, we talked and when they died I felt grief — not relief. Because they had made decisions for themselves, I never had a doubt, or second thought about any decision or choice they had made.
Modern medicine is keeping bodies alive long after the mind, the emotions and the spirit are gone. Hospitals could have kept both my mother and my husband alive for weeks, even months. They said no, and so I brought them home.
I watched the bodies of my mother and my husband struggle for death — not for life. Mama told me to prepare myself: when G-d came for her she was going — and she, oh so faithfully, did. My husband told me not to call the hospice nurse, he wanted to spend one last night alone with me. He died at sunrise.
You ask what do we do about the boomers? I say, force them to make life and death decisions for themselves. And if they refuse, fill out the Advanced Healthcare Directive for them and ask them to sign it. And if they refuse, walk away. Call, write, keep in touch, but let them face the consequences on their own. If that sounds cruel, or heartless, I ask you to remember how it feels to be truly, deeply and fully loved by dying people.
Yes, I have an Advanced Healthcare Directive — and a Physician’s Order Scope of Treatment (POST) — and a conservator fully apprised of my wishes and a will.
Please do not scold me, hand me excuses or belabor your achievements. You are a human being and you will die. You — and only you — are responsible for your dying time. Spend your money any way you wish, but do not ask anyone to spend their life taking care of your body, after you have left it.