*Dad and Mom about 10 years before he had ALS*

In My Father’s ALS, I describe some the disputes between my parents as they faced the relentless paralysis of ALS. Mom did a terrific job as a caretaker for my father, when he could do less and less. At the beginning, they were extraordinary in their collaboration to cope with the evil disease.

Here is one of my favorite stories, about Dad’s showers, from April 1980, six months after the ALS diagnosis:

Mom was saintly in her willingness to help Dad. She already had altered his clothes to foster his autonomy: pants with elastic waist grips instead of belts, loops of string attached to his zippers, and Velcro instead of buttons. If he needed a handkerchief, if he wanted a snack, she would bring it immediately without complaint. When he itched a no longer accessible spot, he would sheepishly request help, and she would immediately scratch him.
Dad’s growing dependence on Mom was difficult for both of them. But they found some unexpected satisfaction in their joint problem-solving.
Pride outstripped modesty, and Dad insisted that I see their finest collaboration: Dad’s shower. One morning, the three of us crowded into the bathroom for the show. Dad provided a running commentary as Mom helped him execute a series of hazardous movements into the bathtub, onto a stool, and around the stool to expose his entire body to the water stream. And then out of the wet bathtub. They had discussed and elaborated every move over weeks of showers, with ever-new variations to compensate for his growing limitations. It was a bravado performance.
I was grateful to see my parents at their best. Dad choreographed these cooperative movements with a sure sense of how to maneuver his recalcitrant body, with irrepressible pride in their solutions to these tricky problems. I could see the strong, limber athlete he had been in high school and the precise scientist he had become. Mom followed his directions, pleased with his feeling of mastery and eager to help sustain his normal life. These were my courageous parents, overcoming adversity through their affection, ingenuity, and determination.
However, now that Dad was reluctant to walk alone [after another fall], his need for assistance assumed disturbing new proportions. Every few minutes he seemed to make some reasonable little request for help. Mom began to feel trapped.
“What will I do when you’re gone?” she asked me late one evening after Dad was asleep. “I can’t wait on him hand and foot.”
And then, to my astonishment, she added, “He’s cramping my style.” This was the first I had heard of her “style.”
Mom pressed Dad to remain as independent as possible. After careful planning for the trip [to their Boca Raton condo], she was shaken by his fall in the condo parking lot just when she thought they had succeeded. But she would not concede that he needed a helping hand for every step. “Try it yourself and be careful,” she would say as if the problem was his carelessness, not weakness.
ALS was transforming their lives, rendering him every more dependent on her. Mom did not want her life changed like this. She made concessions to the disease only with the greatest reluctance. One moment she would confide with a hush that she knew he had been weakening in recent weeks. The next she would insist he still could walk two blocks to the ocean like he had done the month before, if only he had made a greater effort.
I thought Mom did not understand the fundamental truth of Dad’s disease, the truth that I was beginning to grasp. Today’s surprise new weakness and disability, regardless of whether Dad fought it, was tomorrow’s way of life. Perhaps she could not afford to understand it, because she had to keep Dad going every day. She had to maintain her own hopes.
“Am I too tough on him?” she asked. “Tell me. You can see.”

Unfortunately, in April 1980 these were at the beginning of the problems living with ALS, not the end.

The Shower

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