Someone close to me is facing her partner’s dementia. I wrote this for her.
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My Father’s Dementia
and some of the lessons I learned
In January 1976, my father hit a patch of ice on his bicycle, and fell onto his head. It was only a few weeks after his first grandchild’s birth,
He was taken to the hospital and quickly sent home. A week later, my mother became alarmed at his extreme agitation. The doctors found that Daddy had developed a subdural hygroma, an accumulation of cerebrospinal fluid, that was compressing the blood vessels in his brain. They operated, cutting out a small triangle of skull to get access to drain off the fluid.
I flew through the night with my baby and arrived on a sunny morning in New Jersey. My father lay in bed with bandages wrapping his head. He told the young priest who was visiting him, “This is my daughter. She came from New Mexico.” He knew that much but had no memory that I had a baby, that he was a grandfather.
Eleven days after my father’s operation, cerebrospinal fluid had re-accumulated inside his skull. He was silent, no longer lucid, and they did a second operation, draining the fluid again.
In the hospital after the second operation, he looked at me and said, “I know it isn’t real, but I see the word NAIROBI written on your shirt.” A day later, he wanted to shave. I put his razor on the table by his bed and turned to get shaving cream, a bowl of hot water, and a mirror. When I turned back, he had almost finished shaving. He got well.
Things went back to almost normal for over four years – Daddy ran a national foundation, gardened, traveled with my mother to visit us in New Mexico, and even stayed on his own when my mother came to help when our second child was born. Unsure of how the oven worked, he didn’t heat the meals my mother had left in the freezer for him, and subsisted happily on rye bread and pickled herring. His domestic incompetence was nothing new – he grew up in Germany, and said he could never have married an American because she would have expected help in the kitchen and wanted him to barbecue. My mother, an English woman, was happy to take care of all domestic chores.
I knew about only one odd event – my mother, ever thoughtful about how busy I was
with our two small children, did not want to bother me with her troubles. My parents’ friend, whom I’d known since I was little, called me after my father cancelled Mother’s arrangements for their trip to Europe. I called Daddy and told him that he was being unfair; Mother worked all year long taking care of him and she deserved one month of seeing old friends and not having to cook his meals every day.
He relented. Now, knowing what came soon after, I realize that Daddy must have suffered from uncertainties every day, waking in strange beds and boarding trains he did not know. He needed the safety of a familiar place, but could not express his anxieties or needs.
A year later, at a house on Martha’s Vineyard my parents often rented for a few summer weeks, my father believed my mother was keeping him a prisoner. He slammed a wooden chair on the floor. It broke to pieces. Mother grabbed the car keys and drove off. Knowing how reasonable my father could still sound, she wisely stopped by a friend’s house. When the police arrived, my mother and her friend told them that my father, who by then seemed sane, needed to go to the hospital.
From the hospital on the Vineyard, the next challenge was to take him home, back to his familiar space. Mother’s friend Katharine flew to the Vineyard to help. The doctors gave Daddy sedation for the long drive, and he slept for hours. Close to home, he woke, anxious, distressed, and angry. Katharine, someone for whom he wanted to be his usual mannerly self, helped soothe him through the last hour of the trip back home.
By Thanksgiving, my mother lived in fear that her husband would turn on her – and would hurt her. Some last scary event convinced her to send him to a nursing home, an institution with lavish décor and uncaring workers. By the time I visited, she had moved him to a nursing home in the center of town. It smelled of old people, but the helpers were kind. Mother spent most of every day there, and she fed Daddy his lunches and suppers. Her own life was over.
Then some good fortune –three sisters whose parents had taken my father into their home when he first came to the United States sent a large check. They said that Hans, my father, was their brother. And a bed at a nursing home half an hour away became available. Hans’s private room was on the ground level, with windows into a garden. Because of the distance, Mother went there only once a day, and she came home before dark. Daddy did not notice that she was there less, and she regained some of her life.
He would not have wanted her to sacrifice herself when there was no saving him.
I wish I had gone to see him more often. I went only once, on a trip with my family. My father’s silence did not faze our young son who climbed onto his grandfather’s lap to hug him. They nuzzled each other without words.
Nine years after his accident, Daddy stopped eating. I booked a flight for Sunday. On Friday night, I crawled exhausted into bed early. My hsband answered the phone. I can still hear my wail of sorrow when he came and told me Daddy had died.
At the memorial service, our son, now seven, shook hands and told our friends that it was his grandfather who had died. Mother and I asked the oldest of the sisters who called Hans their brother to speak about him. After the service, we had a party in the garden my father had tended for so many years.
What I Learned
Caring for someone with dementia is lonely and a long haul. Caretakers must first care for themselves so that they will be able to help all through that long haul.
Many people are embarrassed, even ashamed, by dementia. I remember my shock when a paramedic, who was taking care of my mother after a fall, asked me if she had dementia. It seemed a betrayal to answer, "Yes, a little." It need not be this way.
Lucidity comes and goes. A person with dementia, given a lucid moment, will want to protect others from what he or she might do when demented. It may be necessary to put someone in an institution.
When looking for a person or a place to take care of someone you care for, you should trust your intuition. And then check references, certifications, and so forth.
Just as we understand that a human is more profound than mere body, we need to believe that a human is deeper than mind. The nurses and aides who fed and washed my father recognized his kind spirit, its steady presence beneath his outbursts of anger and frustration. Our child was not distressed by his grandfather’s absent mind, but climbed into his lap for the embrace that came from his grandfather’s spirit.
The familiar is comforting to those with dementia. Gardens, birdsong, animals, and sunshine, all are comforting.
Humans may choose their own path. When my silent father closed his lips to the spoon we held to him, he was affirming that it was time to let go.
Elise Rosenhaupt, author of the memoir Climbing Back, writes about her work as a patient's advocate and other experiences that cross her plate.
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