Barry Petersen can sympathize with A.B.'s journey. For him, finding a new love when his wife was stricken with Alzheimer's was his way of choosing to live. The grief he felt over his wife's disease, and the emotional toll of caregiving, brought him so low he considered suicide. But in the end, his choice to enter into a new relationship was about striking back against Alzheimer's.
"Alzheimer's took Jan," says Petersen, a correspondent for CBS News who has written a memoir, Jan's Story, about his caregiver journey. "I decided that it is not going to get both of us. By going on and by having a life, I was looking in the face of the disease and saying, 'You're not going to win twice. You took one. You won't get me. I am going to have the rest of my life.' "
A.B.'s relationship with Joyce deepened as Frances' health worsened during the last year of her life. Then in August 2009, Frances stopped taking any food or water. A.B. called hospice and did not leave his wife's side. "I held her hand those last three nights because I didn't want her to die alone in the dark," A.B. says. "We had done everything together in the past, so I figured I could help her through the dying the same way."
With his life partner gone, A.B. was filled with an unexpected onslaught of emotions: relief that her suffering, and his hard work, were over; guilt over feeling that relief; and anger at what the Alzheimer's had stolen from them both. But it was the loneliness that he found hardest to handle.
"Women have lady friends; men don't have comparable friends that they can share things with," A.B. says. "The only person that they can get close enough to, to share personal things, is a spouse or a girlfriend."
The meaning of faithful
Petersen says that, more often than not, it's women who question his choice to enter into a secondary relationship.
"Wasn't the wedding vow 'till death do us part'?" they ask. "Somebody said, 'If you really loved Jan, you would have committed a kind of emotional death. You would have given up everything,' " Petersen says. "I respect what those people say. I honor their feelings. But I personally chose a different way, and I am satisfied with what I did. For me, just for me, it's what I needed to do."
Petersen and his lady friend are committed to each other, and he says she is a full partner in his role as caregiver to Jan.
"She goes on every visit," Petersen says. "Jan loves seeing her. I see Jan, and then when we leave I am sometimes in tears, and [my lady friend] is there to help."
The need for a new relationship is not limited to husbands. Female caregivers interviewed for this article, but who were uncomfortable with having their names used, lamented most a loss of physical intimacy.
"Basic human nature is to want someone to desire, love, comfort you," says one woman, 50, who is caring for her 55-year-old husband with Alzheimer's. She has not taken on a "paramour," but often thinks about it.
"With a spouse who has Alzheimer's disease those basic needs are put on the back shelf. I don't know if turning 50 or menopause has awakened me, but I want passion back in my life." To her, passion means a man who desires her, someone to hold her, someone who knows how to kiss and caress, and someone to laugh with—all impossible to have alone.
"I know it sounds like I am selfish, and maybe I am," she says. "I just say until you have walked this journey you can't judge me."