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The New Grief - Page 2

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Long Day’s Journey into Night

Today, the story of death and dying is often different. After my grandfather died, my grandmother lived for another 48 years. Many of those years were reasonably healthy and happy. But at some point, Grandma—and my family along with her—entered an unfamiliar territory of protracted suffering, for which we had virtually no preparation or guidance.

Soon after my grandfather’s death, Grandma moved in with Uncle Bruno, his wife, Aunt Irene, and their three children. Their split-level Long Island home became a bit cramped, but my grandmother seemed glad to be living in the midst of her family. Things went along smoothly for several years, until my grandmother was diagnosed with a large, fast-growing (but ultimately benign) brain tumor, which was then surgically removed. That was my first encounter with the kinds of advances in medicine that can extend life: if this type of tumor had invaded her brain even 15 years earlier, it likely would have been fatal.

The surgery saved my grandmother’s life, but it changed her. She sank into a state I can only describe as a mild melancholia, spending more and more time in the former family room, which Bruno had converted into a bedroom for her. She’d venture out when we visited, but cautiously. In contrast to the outgoing woman I’d known as a child, she was now much more like my grandfather—standing on the outskirts of social interaction, looking in.

Years later, after Bruno had died and Irene’s children had moved on, Irene and my grandmother moved into a retirement community in Connecticut. For major holidays, the two of them usually joined me, my wife, Terri, and our two children at our home nearby. Though Grandma seemed happy enough during these visits, she never recovered her former exuberance.

Then, as she passed age 85, she began to decline steadily. The mild melancholia spiraled into depression. She became more and more lethargic and uncommunicative. When I’d ask her how she was, she’d just shrug and murmur, “I don’t feel so good these days, Joseph.” If I asked why, she’d just shrug again. We all felt bad for her, but none of us had any idea what to do, and no one seemed to want to talk about it much.

In time, it became painfully apparent that Irene could no longer take care of Grandma by herself. Irene was approaching 70, as were my parents. One afternoon, when Irene was out at a church social event, Grandma put a pot of soup on the stove to cook and left it there for three hours, until Irene returned to the smell of scorched metal. On another occasion, Grandma went out to get the mail, only to be brought home an hour later by the police: she’d wandered off the condo grounds and gotten lost.

So Irene and my mother placed Grandma in a nursing home. It was nice enough, as such places go. The staff was caring, the building featured bright day rooms and a nice dining area, and everything was decorated with cheerful floral wallpaper. Residents were encouraged to participate in activities like playing Bingo and watching movies. My grandmother didn’t lack for visitors, as my mother and Irene worked out a rotation in which one or the other went to visit her nearly every day.

Nonetheless, Grandma hated the place. She complained about it every chance she got. The food was bland, she said. Her roommate got on her nerves. The “help” didn’t respond fast enough. In retrospect, I wonder whether these issues bothered her as much as the overall feeling of confinement and finality that lingered in the air—a feeling I certainly experienced when I visited. Although some residents greeted me with a smile and a friendly hello, plenty of others sat silently in wheelchairs, lining the hallways or the walls of the day rooms. A smell of disinfectant hung in the air. Though I could never bring myself to talk to her about it (for I, like everyone else in the family, was too busy trying to convince Grandma that the nursing home wasn’t so bad), I felt that I understood her distaste for the place. It was the gut knowledge that, to borrow from rocker Jim Morrison, “no one gets out of here alive.”

My grandmother made it to 100, but I don’t think you could say she “lived” to be 100 in any meaningful way. For the last six months of her life, she slipped in and out of consciousness. Many times when I’d visit, she’d be asleep. The staff always insisted on waking her. “She’ll be glad to see you!” they’d say, gently patting her awake. Yet when Grandma opened her eyes and looked at me, I wasn’t sure she even recognized me, much less was glad to see me. I found myself wondering whether she wouldn’t be better off just slipping away. Naturally, that thought made me feel guilty.

Toward the end, she lay semicomatose in her bed, heavily dosed with painkillers as her organs successively shut down. The staff had to strap her into some kind of lift to give her a bath and rub her body with lotion. They were kind enough, and the physical environment remained as clean and cheerfully decorated as ever, yet the place was imbued with deterioration and impending death.

Then, one afternoon, as I sat quietly with my mother in my grandmother’s room, Grandma stirred. Her eyes opened and her head moved. Suddenly, to no one in particular and in a voice filled with pain, she asked: “Am I dead yet?”

I got up and left the room, fighting the urge to scream.

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  • Comment Link Sunday, 25 March 2012 17:27 posted by Diann Onsted

    I appreciated this new paradigm on death and dying. Sometimes too sudden, and other times so protracted, this process is something I have shared with too many friends and loved ones already. Thank You.

  • Comment Link Wednesday, 21 March 2012 22:26 posted by Joan Landry Haltigan

    I was a Caregiver for 28 years to the love of my life who suffered a massive cerebral hemorrhage at age 38. The emotions expressed in this article, I felt.

    At the same time, as an only child, my mom, also in a wheelchair, depended on me for love, assistance and nursing care, and then there were 4 young children to raise.

    I wouldn't have done anything different for those I love, but because of those experiences, I wouldn't want to put my family through what I went through and have decided that letting nature take its course isn't all that bad.

    I believe we continue therapy over and over because of circumstances and/or fear of dying.

    I know also, that had I been diagnosed with a terminal illness when my children were still young, my mom, still alive and my husband in need of my help, I would have moved heaven and earth to be available to care for all of them.

    Great article, long overdue.

  • Comment Link Thursday, 18 August 2011 16:58 posted by Leah Forster

    This article is long overdue! I have a unique (and exhauting) perspective as a pediatric oncology social worker and the caregiver to two parents at end of life. As I help parents make excruciating decisions about their children's health care by day, I am also currently on the other side making those excruciating decisions for my parents who never wanted to talk about what kinds of care or interventions they wanted or didn't want. So it's a guessing game, but informed by what I know from working in health care social work for 20+ years: many times, death isn't the worst thing.

    It takes unflinching bravery to say no to interventions that I know have no value. And with nursing home regulations as they are (not patient- or family-centered), I must keep saying no. And it breaks my heart every time.