Advocating for a 'Good' Death

"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.

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.