When we met in October 1995, Lilly was 66; I was 63. We were in New Jersey for the annual meeting of the Well Spouse Foundation -- an international organization where caregivers of chronically ill spouses shared their experiences. Lilly was president of the foundation.
My wife, Carole, had been ill since 1968 with multiple sclerosis. She was also bipolar and suffered from paranoia. I had written a book, "The Other Victim," about caregiving, and was asked to talk about the book.
Lilly heard I was in public relations and asked if I would help with the organization's publicity. During the following months, we were in constant touch and managed to meet a couple of times when I came to New York, where Lilly lived and where the organization was headquartered. I lived in Potomac, Maryland.
As the months passed, our communications increased. Both of our spouses were in a downward spiral; George, Lilly's husband, had also been diagnosed several years earlier with MS. Lilly was the only person I wanted to talk to about what was happening, and I was the only one she wanted to discuss her problems with, too. Family and friends could not begin to comprehend our daily burdens as caregivers.
In the winter of 1996, Carole attempted suicide and I had to commit her to an institution. At the same time, Lilly's husband was exhibiting signs of mental deterioration. Lilly and I kept each other together and able to cope, although we lived 250 miles apart.
One day, I called Lilly to tell her that I was coming to New York. She picked me up at my sister's house in Bayside and drove to Jones Beach, where we walked the boardwalk and talked about our families. After lunch, we went to the movies; I instinctively put my arm around her. Lilly nestled into me, and when we left the theater, she told me, "Something's going on here." I had no clue.
At dinner, in a restaurant near her home in Roslyn, I felt so normal. And so did she. But when I returned to Maryland, I was confused and told my therapist about Lilly. The therapist said, "Maybe there's something more going on here," echoing, in a sense, what Lilly had said. Later, I learned that Lilly had also seen her therapist, who gave her the same diagnosis as mine had given me.
The next time I saw Lilly, there had been life-altering changes for both of us. We had been advised that our spouses belonged in a nursing home; we could no longer manage their care at home. After dinner, I asked Lilly if I could kiss her. There was no hesitation. She suggested we take a walk in nearby Christopher Morley Park in Manhasset. We held hands, and I told her that I loved her. To my relief, she said she felt the same.
Despite my joy that my relationship with Lilly had reached a new level, I felt guilty. When Carole and I married in 1955, I was in love with her and still loved her. But I knew I loved Lilly. When we were together, I never felt as if I was cheating. As time passed, Lilly and I managed to spend some precious time together, almost monthly. The one aspect of our relationship that bothered me terribly was lying to Carole. On balance, I believed it was better than telling her the truth.
Although Lilly and I had talked often about being together sometime in the future, after George's death in 2001, I realized Carole's life in the nursing home would probably go on for years. I suggested to Lilly that it might be prudent if we ended our relationship so she could meet someone to fulfill her life. To my relief, she said emphatically, "No!"
Carole lived for nearly 14 years in the nursing home and died in June 2010. Over the years, my three children had met Lilly, and I had met her two children. However, while her grandchildren got to know me after George died, my grandchildren didn't know about Lilly while Carole was alive. Several months after Carole passed away, I wrote emails to my four eldest grandchildren. I told them that despite my relationship with Lilly, I was always there for their grandmother and was a strong advocate for her care.
I told my three younger grandchildren about Lilly in person. My grandson, who was 15, said, "So, I guess you were having an affair." His father, my son-in-law, quickly told him that I had been a caregiver for Grandma for nearly 42 years and that I deserved some happiness.
And, I have found that happiness with Lilly. A year and a half after Carole died, Lilly and I had a formal commitment ceremony. We had wanted to get married, but a major impediment was that, if one of us had to go to a nursing home, the spouse would have to pay the bills. I had spent more than $1 million on Carole's care, and it had taken a severe financial toll. Also, when Lilly and I die, we want what each of us has in savings, etc., to go to our children and not to each other.
As far as I am concerned, we are married. After our commitment ceremony before 75 family members and friends, I told Lilly I wanted us to wear wedding bands, and she heartily agreed. She's my wife in every aspect possible, except for a piece of paper certifying a marriage.
We live together now, and though we are in our 80s, we feel so fortunate to have each other. Sometimes we feel like teenagers -- only a bit more experienced and a lot wiser.
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