September 23rd, 2011 at 2:05 pm
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The process of dying: when to say “enough”

by Judy Kirkwood

When my dad was hanging on for years, a friend in the eldercare profession would often ask why we were prolonging his life and, by implication, his misery. He was legally blind, although because of his dementia he didn’t know it so he never complained about it. He forgot he couldn’t read or walk without assistance.

My mother managed dad’s diabetes so well that my ex-husband, a physician, used to refer to dad as “the oldest living male diabetic.” He was amazingly stable, even if he was having a number of mini-crises related to blood sugar. He had Alzheimer’s disease and sometimes didn’t recognize us and–on rare occasions–became so confused he was combative. But most of the time he was a gentleman, even if in his mind we were strangers.

Why did we keep dad alive for so long?

As dad survived one health crisis after another, my friend would ask “Why do you keep treating him?”

My answer was always that as long as he could give and receive love, we couldn’t let go. His quality of life may have diminished, and it certainly put a cramp in my mother’s quality of life and a wrinkle in my sister’s. But who can put a limit on love?

Dad was happy to see each of his children every single time we walked in the front door, or into the room, or sat down beside him, or he turned his head away and back again. Each time it was as if we had just arrived and he was delighted. I know I couldn’t resist coming home to see a man who was thrilled to see me many times a day.

He gave great hugs until the day he lost consciousness in his last week of life.

Even though during his last years he sometimes thought one of his daughters was a man, or didn’t recognize his wife or home and wanted to be returned to his “other family,” he was fine as soon as he was soothed with music or some other familiar distraction. But the most compelling reason to keep treating him was that he wanted to live. Sometimes when he was sick or wondering why he felt so poorly, I would tell him how old he was and remind him he had lived a long and happy life.

“How long do you expect to live,” I asked once when he was 90. “Maybe to a hundred,” he said quite seriously. “This isn’t nearly long enough.”

And he was right. He had another year to go.

Posted in Alzheimer’s, Caregiving, Support | 7 Comments »
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7 Comments to “The process of dying: when to say “enough””

  1. Judy

    Jen: God bless the primary caregivers. My sister was amazing with both my mom and dad, and most of the time she was working full-time, although we had CNAs and mom spent a year in a nursing home as well, and both parents went to a daycare at some point.

    I did toilet and wash my parents and change dad’s urine bag and urinal and get them ready for bed. I experienced just a touch of what my sister did. Most of my blogs are about my sister’s challenges and successes as as a caregiver; I’m often telling her story (through my eyes).

    She says herself that she also had the reward of my parents’ attention and assistance to her before they became ill in their mid 80s; and that if she had it to do over again, she would have taken mom out of the nursing home and done more primary caregiving herself. It was exhausting, but somehow she was able to fill herself up and be able to keep giving. She is an extraordinary person.

    I’m sorry if you have been caregiving that long with no help. My other sister and I, although we lived far away, tried to visit and pitch in as much as we could. For us, everything turned out for the best and my youngest sister does not regret any of the time she spent caring for our parents.

  2. I hear you when you talk twenty plus years of caregiving. I was a primary caregiver to a total of seven elders, and my caregiving spanned two decades. The exhaustion is unbelievable.

    I believe that Judy’s article was about her dad’s will to live. Some people do everything to keep people alive, no matter what that elder thinks. Other’s are just doing what their elder has said he or she wants – either to be kept alive at all costs, or to be let go naturally once a certain state of being is reached. This is a personal situation based on families and their feelings about quality of life.

    Judy’s dad wanted to live even with his diminished quality of life, so the family followed his wishes. I don’t think she’s judging anyone in telling her own family story.

    Meanwhile, I really do understand the rigors of daily caregiving taking over years of our lives. I hope you can get some respite to give you a break. You’ve had a huge challenge that is not yet over.
    Take care,

  3. Susan Gavin

    What a beatiful story — poignant — I can just see your father lighting up when one of you walks into the room. A truly hopeful story in a world of so much gloom.

  4. Susan Gavin

    What a truly poignant and sad and love-filled story.

  5. Lila

    So how old was he when he died? Did he have Type 1 diabetes?

  6. Helen

    Sad and so lovely!

  7. Jen

    This non-caretaker child is very willing to condemn other relatives to 20 years of caretaker duties. This child apparently doesn’t know or care that these duties are exhausting and life-draining. She/he only enjoyed occasional visits with the ill parent, and probably never had to change a diaper or restrain a parent who wanted to go out wandering in the middle of the night in pajamas.
    The views of uninvolved relatives are much less important than the views of the caretakers, whose lives are so impacted.

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