As I struggled through my husband Howard’s eighth year with Parkinson’s Disease, his neurologist suggested that I join a monthly "well spouse" support group to help me cope with his downhill spiral. Such groups, peppered throughout the country, address the needs of life partners caring for chronically ill and disabled spouses. Reluctantly, I went.
After three sessions, Claire, a funny, lively and attractively streaky blonde pediatrician invited me out for coffee. I looked forward to escaping from the drab synagogue classroom where our group met – and from the group’s sad stories, downcast eyes and meager refreshments, as we soldiered on discussing adult diapers, doctor visits and lonely nights with spouses who were no longer partners.
Claire and I met at a local Starbucks midway between our suburban Westchester homes. We traded stories. Both of our husbands had been diagnosed with Parkinson’s 10 years before. Claire was 67; her husband, Bob, a year older. Howard was 72 to my 58.
The train wreck that is Parkinson’s hit Claire and me differently. Bob was physically fit, and was able to walk five miles a day. Howard was not. Exercise had always bored him, and Parkinson’s froze his feet to the floor. What I mean is that, like most Parkinson’s sufferers, Howard experienced dyskinesia – abnormal involuntary movements manifested as either tremors or, in Howard’s case, "freezing" until the body relaxed and could move again. Both men were cognitive basket cases, partly from the disease, which causes mental impairment in most people, according to the Parkinson’s Disease Foundation – and also from the abysmal medications, such as combination carbidopa/levodopa, which can cause reality-bending hallucinations while poorly regulating failing bodies.
Settling in for some coffee and serious girl talk, Claire brightened as she bent close to me: “I’m going to give you my secret to coping with Parkinson’s,” she said. I was eager for her wisdom on how to make caregiving better, easier and smarter. But I got a bigger jolt than my double espresso delivered. "I’m having an affair and you should have one, too,” she said, beaming.
Steering me to an online dating service for married people that claims to help you find “that someone special who makes you feel young and alive again,” she cautioned that I might need several affairs before finding Mr. Right. Who knew that you could find Mr. Right by doing wrong? Who was I to argue with the company slogan — “Life is short. Have an affair”?
The odds on the cheaters’ website were in my favor: 70 percent of its more than 12 million members were male. According to the site, its members had affairs because “their relationships became complicated and boring,” and “the spark disappeared.” Reassuringly, it promised that “the Internet’s wandering eye could bring happiness and excitement back into your life.”
The site didn’t mention caregiver spouses as needing respite, solace, playful conversation, touching and sexual release from our burdens. Somehow, we weren’t among those entitled to skin-on-skin contact, as are bored housewives and frustrated businessmen. Yet we may well have those needs.
To lose my beloved to a disease that turned a 6-foot-2-inch bear of a man full of passion and energy into a skeletal ghost in a diaper was still an unfathomable loss for me. The loneliness, despair, sadness and lack of physical intimacy often overwhelmed me. To have my husband morph from a world-class musician who lifted kettle drums like they were tinker toys into a helpless baby could easily have driven me into another man’s bed.
I visited the cheaters’ dating site many times and almost signed up, but I couldn’t do it. As much as I would have liked some sexy midweek madness or the occasional hot weekend date as an escape from my nightmare, something besides morality (an AP poll says 90 percent of Americans think adultery is immoral) held me back. I was married to a man who loved me deeply and was exquisitely sensitive to my emotions. As sick as he was, I could never have hidden such betrayal from him. He would have smelled it in my hair, seen it in my eyes, felt it from my heart. Even though Howard was no longer the man I had met, fallen in love with and married, I could not hurt him.
Howard lingered for another year, then died of cardiac arrest in my arms. Claire attended his funeral, tears in her eyes. Later, we made several half-hearted attempts to reconnect, then went our separate ways.
Grateful that I decided not to have an affair, I don’t begrudge the well spouse who has an affair to make living with a chronically ill partner bearable. Receiving sex-drenched, male attention when I was so desperate would have fit my romantic "life is beautiful" mindset. How easily I could have tricked myself into believing that an adoring hunk would ease my pain, if only temporarily.
But I knew better. Even bent and broken, Howard was still man I feel in love with, married and shared my bed with for 27 years. Our profound connection proved stronger than a comforting liaison could ever hope to be.