My dad’s descent into Parkinson’s psychosis

A caregiver’s perspective by Jeffrey M. Simon, PhD, Sept. 23, 2024

Jeffrey M. Simon as a boy poses with his father, David Simon, in Bronx, New York. (Photo courtesy of Jeffrey M. Simon)

My father’s descent into Parkinson’s psychosis began with a triple heart valve replacement surgery at age 68. He was placed on a heart lung machine during the procedure. It seemed to have triggered plaque in an artery to dislodge, causing barely perceptible damage to his brain.

After the surgery, he was confused, which was dismissed by his surgeon as an anesthesia hangover. But I knew his cognitive function had been altered — and that it catalyzed on a downward course. Within a year, he was diagnosed with Parkinson’s.

My father’s function began to decline, constricting his activities and socialization. His social network narrowed as he weakened, physically and mentally. It was both sad and frustrating to witness.

One evening, he drove over to meet us for dinner. I watched him drive away toward his home and shuddered with alarm. He had completely ignored a stop sign and headed straight into traffic. No one was hurt, but it was still life-changing.

It became apparent that he should no longer be behind the wheel of a car and that he would require assistance taking care of his daily life.

Fortunately, he did not resist when I advised him that he should no longer use his car. He also was receptive to day-to-day assistance.

We started with a day helper, until I began receiving calls in the middle of the night from the police in the town where he lived. They told me that he had reported a break-in, yet when the police came to the scene, they couldn’t find anything wrong.

I lived about 30 minutes away from my dad, and driving to his house when the police called at night affected my sleep and daily life. I was raising three children at the time, and working long hours seeing patients as a psychologist. Dealing with these calls was difficult and upsetting.

When encountering his hallucinations and delusions, my father was not aggressive. In fact, he  sometimes was even mildly amused to be making accusations. His visual hallucinations were not so much frightening to him as they were reflective of his overall decline.

Once, while at his house during a visit, I sat in a chair in his den. He immediately became excited, giggling to himself, as he said, “Don’t sit there, you’re sitting on her.” I shared the humor he found embedded within his perception, even though I knew it reflected a more serious aspect of his illness.

His thought processes were confused and his perceptions were altered. He seemed unable to understand that what he perceived was not actually occurring. Increasingly, I found myself being a parent to my parent.

By the time my father required round-the-clock care, I reluctantly had him admitted to a nursing home.  I had wanted him to stay in the house he had lived in for 35 years, but he had become increasingly incontinent and less and less in touch with his surroundings, withdrawing further and further into himself.

He declined rapidly in that setting, perhaps a bit due to the environmental inertia, but more likely due to an illness course that was trajecting down. He became less and less oriented and communicative, and more and more constricted physically.

By the end of his life, he was curled into a fetal ball. He died in an empty cognitive state, apparently devoid of consciousness.

Losing him was, by then, a blessing — ending a loss that had begun a few short years before.

Grieving his loss, missing his warmth and love, and being deprived of his wisdom and judgment are burdens I carry to this day.

There is no good advice for witnessing this type of decline in someone you love, other than attempting to use the lucid time that remains to express all you want to say to that person, and to engage them in planning for the time when they will no longer be able to plan.

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