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Advocating for a 'Good' Death

Discussing end-of-life wishes early on can make the final days easier for everyone

spinner image A woman filling out paperwork with a family member.
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Our dog Woody was 12 years old when he died last week. His presence in our family eased us through some very hard, sad and mostly wonderful moments. When it came to unconditional love, he gave as good as he got.

I'd never had a pet growing up, so I sheepishly confess that I'm guilty of secret eye rolls when folks went on about how heartbroken they were when their animal died. I want to apologize to every single one of those people.

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Woody began slowing down in August. He stopped springing up when we walked in the door. Two weeks ago, without my completely understanding, he began the process of dying. He stopped eating, didn't want to walk and wobbled when he stood. His legs would go out from under him and it was all there in his eyes. “It's my time,” his eyes said. “Can you please let me go?”

And so we did. COVID-19 meant we couldn't all be together in the vet's office, so we chose a mobile vet service. With all three daughters home, the five of us surrounded Woody in his own bed. We petted and held him, sobbing. We told him how he was loved and then sobbed some more. The quiet ease of his passing left us all feeling spent but whole. We wouldn't have changed a thing. And the process of loss and grief unpacked the two very different journeys I'd experienced with a loved one's death: what could have been and what was.

A slow decline

As Alzheimer's slowly and stealthily began to scramble my father's brain in his late 60s, we three daughters quietly watched him fade. I longed for him to articulate what was so painfully obvious — that the lights were gradually going out inside his head. If he'd been able to acknowledge it, if we just could have said the word, we all might have all felt more settled.

Instead, his decline remained the elephant in the room, moving at a slow, lumbering pace toward a certain end. We had all become experts at avoiding the word Alzheimer's in his presence as he moved from living independently with my mother to the memory care ward of my parents’ senior living facility and finally to the nursing home. After the long drive to visit him, I'd enter his room to find a person suspended in a shifting time continuum, unmoored from the day or hour. It was there in his eyes.

"I want to die,” he said to my mother during lucid moments. She visited daily, force-feeding him prunes, massaging his back, rubbing lotion on his parchment paper skin. The words always cut because they are some version of the end we wanted for him, too. “This is not how he wanted to live,” we'd say angrily to one another. This zombie version of my father, slowly being erased by his own brain, is not what anyone would choose. Give me the giant ticker explosion, the heart attack that takes me on a mountain hike or the gold standard exit: dying in my sleep. But who among us really gets to control that?

There are good and bad deaths. And my father's final days were not so good. In the end there would not be enough pain medication, not enough communication with the nursing home staff, too much lag time with hospice, despite the advance directives. He was agitated and scared, confused by the dementia and the hospital setting. And in that gap, it took too long before we arrived at the bedside to demand the pain meds he needed to ease him comfortably to the end.

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The three of us had failed to completely comprehend our mother's utter exhaustion after the sorrowful fog of his long, slow slide. We'd naively assumed that she'd be capable of advocating for him in that final week and we scrambled to make it right. On the last night of his life, I was shocked that she didn't wish to be there when he died. And then it occurred to me: She'd said her goodbyes long ago.

Being there, holding his hand as he took his last breath, was indescribable to me. I want to believe he knew we were present as we whispered he could “let go.” Had we done this right? What could we have done better? The questions circled until the passage of time edited out the bad, offering mostly snapshots and movies of my robust father, the man with the wide, toothy smile.

The quick passing

My mother-in-law had a good death. Her increasing dementia and agitation were just beginning to deplete her husband's caregiving capabilities when her lifelong smoking habit ended her life swiftly. There was no need for hospitals or facilities, no big decisions to make. She passed at home, surrounded by her sons and husband in the same bed to which she'd brought all four babies home from the hospital. I was awed and honored to be positioned near her feet as she drew her last rattling breath. There was an intimate, silent communion as we all laid our hands on her in those final, sacred moments. Witnessing the peace of that, the calm, has left me less afraid of death.

Planning ahead

My mother has been very clear, all of our adult life, about her end-of-life desires. “I don't want to linger,” she says. But as she moves closer to 90 years old in fairly good health, what does that mean? How can we help her achieve the kind of death she wants? I don't have those answers, but I've come to realize that the life force has a will of its own.

Some of what comes next means being educated, having conversations in advance, putting things in place. We hear this often when it comes to the end of life. But so much of this is beyond our grasp. In the end, no matter what we wish or plan or hope for, our loved ones will be largely bystanders. We should all be lucky enough to be there for the supporting roles, the touch and love, the reassurance and comfort.

More than anything, I want to be able to talk about it all openly, to have the kinds of honest conversations that weren't emotionally possible for my father and mother-in-law, proud members of the Silent Generation.

In my mother's case, I'm so thankful we can have the conversation. She has all of her affairs in order, her DNR and power of attorney, and she's been firm that she wants no extreme measures. When she passes away she hopes to be looking at a picture, wherever she may be, of the moon setting over the lake where she spent so many summers of her life. She's even chosen the picture. These conversations with her are comfortable and fluid. More than anything, my mother desires to make this easy for us. She's determined to remove the guesswork. And while we cannot plan the when, or the length of time, she has put in place the things she can control.

Death, dying, caregiving and caretaking are all such individual and private things. We will each handle them in our own way and in our own measure. And often there is little you can do to prepare. Being present for these mostly “good” deaths, I'm certain that the more we can acknowledge the old adage that “dying is a part of living,” it will be easier not just for us, but for those who love us.

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