Nephew Willy, 1967 – 2007 (Part 2)

My Mom was remarkable through Bill’s illness. She provided significant financial support so that Bill had the services of a neurologist, an ophthalmologist, a dentist and other medical care; she bought prescriptions before he was able to be accepted in the Medicaid system. Even afterwards, she purchased items that weren’t covered, services that weren’t covered. More importantly, though she provided emotion support to Bill and his family.

When Bill was still somewhat mobile, over several years Don & I would take Bill to Mom’s, about 4x per year, for a week each time. When we would arrive, Mom (then in her mid-80s) would have pulled up the carpeting from one of the bathrooms, moved a very heavy Lazy Boy chair from the den to the living room (and its corresponding living room chair to the den), and make her home as accessible as possible. She also had all the food (including her wonderful breadsticks) prepared for the week. Mom did everything within her power to make these weeks to be a highpoint for Bill – his life was otherwise empty, his time occupied by television.

Not that the time at Mom’s was particularly exciting. A highpoint of one trip might be a trip to Wal-Mart (a mere 25 miles away) to purchase an answering machine; another trip might be a trip to the community’s swimming pool, complete with a “swim” with Bill’s body encased in floating noodles. We’d spend time playing mind games (Don was a master of devising methods of playing various games that didn’t require board movement), or “Marge ball” (in which we’d through a jingle ball over Bill’s reclined legs, only to have our cat, Marge, leap over Bill’s legs to retrieve it). Bill enjoyed games, Marge ball, television (The View was his favorite). Bill was waited on hand & foot, a service he couldn’t get at home, as his mother worked full time. Through these years, he could communicate without difficulty.

After a time, Bill was no longer able to travel to Mom’s – or more precisely, we were no longer able to care for him at Mom’s. He needed more than we could give – a Hoyer Lift to get him out of bed, an adjustable bed, and other assistive, non-portable devices. The trips to Mom’s ended.

By this time, Bill had moved into a facility for physically disabled young adults, the Merica House. The Merica House is a novel concept – not a nursing home, but a facility where younger folks who are profoundly physically disabled by any number of problems (cerebral palsy, spinal cord injuries, multiple sclerosis, and other conditions) pooled their assistance dollars to purchase aid services.

During Bill’s residence at Merica House, my Mom would drive 100+ miles nearly every month to sit at Bill’s bedside for 2-3 days. She’d often comment that they were the longest days of her life, but knew those visits were so important to Bill. She’d lovingly feed him (a lengthy process because of his propensity to choking), consult with the aids and the coordinator of Merica House, and make sure Bill got the best care possible – at least when she was there. She knew the good, kind aids – and the lazy ones. She heaped praise on the good ones, and let the others know of her disapproval. And she would sit by Bill’s bed for hours and hours.

It wasn’t long after Bill moved to the Merica House that he became very difficult to understand, because MS had affected his muscles needed to form words. This was especially frustrating to my mother who had a significant hearing loss; even her hearing aids didn’t permit her to understand her bedridden grandson. But that didn’t stop her regular visits. She made a chart with the alphabet so that Bill could point to letters. Even that was a struggle, as Bill has serious tremors. Soon, he was unable to point at all. Communication was limited to a thumb up, or a thumb down.
Mom’s last multi-day visit to Bill was in December, the day after she returned home she learned of her own death sentence.

I took Mom to see Bill one last time on January 25. She spoke to him pragmatically about her illness and her prognosis. He was losing his champion, a person who loved him without question, without strings. A person who had long ago forgiven him completely. Although he was no longer able to communicate, a single tear rolling down his cheeks spoke volumes.

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