First Person Singular: The Genesis of Care

by Phyllis Silver on Thu, 2007-03-01 09:16

In the February issue Stan Silver wrote “In the Beginning,” his coming to an understanding of ALS and how he would live with it. This month his wife, Phyllis, writes of confronting the emergence of her role as Stan’s caregiver.

Phyllis and Stan Silver

Stan is an even-tempered person with an easy smile and dry humor.  He’s a creature of habit and isn’t comfortable with change. But gradually his body altered and bent over.  His hands and legs weakened, yet we were stymied by what was happening. It was so hard to fight the unknown, and then his diagnosis of progressive muscular atrophy (PMA), of ALS, was made.

Stan surprised us all with his ability to cope with and adapt to monthly, weekly and sometimes even daily changes, and maintain a positive attitude. In the meantime, I dealt with everything in my own way — with chocolate and humor — as I discovered time wasn’t my own but belonged to caring for Stan in every way.

I was ready to rejoin the work force, or so I thought, as I waited for Stan’s condition to improve or level off.  My reality check came the day I walked into the bedroom and saw Stan using his teeth to pull up the sheet. I was crying on the inside but remained calm on the outside, realizing his frustration and how upsetting this was for both of us. And he still was only at the beginning of this journey with ALS.

Was I resentful? No, I was just disheartened to witness what was happening to my husband while sometimes feeling overwhelmed and helpless.  I once taught time management, yet now I feel that time is controlling me, and I can’t seem to develop a routine because of the constant evolution of Stan’s need for care.

I’ve learned I can’t be a caregiver alone, and I don’t need to be. The MDA support group has been very beneficial to both of us.  The other caregivers share experiences, ideas, laughter and tears. One caregiver gave me special silverware that she thought would be easier for Stan to hold, but the progression of the disease allowed him only a short time to use the utensils. The MDA representative at the support group, MDA Health Care Service Coordinator Jackie Puerta, is warm, helpful, and genuinely concerned for all of the people with ALS and their caregivers. Our relatives and friends have also been very supportive, with many of them visiting from out of town as well as calling frequently.

Right before the New Year holiday weekend, Stan’s new power chair just stopped working.  I called the MDA office, and Health Care Service Coordinator Sarah Lindenmoth arranged for a manual chair to be delivered so Stan, who was stuck in bed, could join our company for dinner.  The next day MDA delivered a loaner power chair for him to use until his own chair was fixed. 

To me MDA stands for Many Deeds Accomplished.

Stan and Phyllis Silver live in New York. Phyllis has taught kindergarten and second grade and worked in college administration and corporate training. Her new career is full-time caregiving.

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