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."
The next phase
The journey definitely affected A.B.'s expectation of what he wanted for the rest of his life. Two months after Frances' passing, long before, he says, many would have deemed it, "acceptable," A.B. started courting Joyce. And soon he wasn't counting the days since his wife's passing, or breaking into tears at the small mementos of her existence—the last bottle of nutritional supplement in the fridge, her photo on the mantel. Seven months later, A.B. and Joyce stood before a small crowd of friends and family and pledged to spend their remaining years together, however many or few there may be.
"I have promised, faithfully, that I will outlive her," A.B. says with the resolve born from deep love that lets you believe saying something is enough to make it so.
"So she's depending on that, and I have practiced being the caregiver, so that's the way it ought to work out. And yes, I love her enough to be willing to go through that all again. It beats being alone by a long shot."
Choosing to love again is a leap of faith and an act of courage for Petersen as well. "I am a lot more worried that this is something that would happen to me and that [my lady friend], who has already been a widow, would have to look after me," says Petersen.
A.B. refuses to fixate on the inevitable. Both he and Joyce came to the marriage with their preexisting conditions—his bypass surgery, her spinal stenosis. Recently, he spent weeks nursing Joyce through a bout with shingles. She is slowly getting her strength back, and once she's ready, A.B. has a to-do list he wants to complete. There are trips to take, redecorating to do in the house. Most of all, there's life to be lived.
"It was my vision of a life 'after' that sustained me through the past hard year or so, and now everything really is coming up roses," A.B. says. "Of course, I still love and miss and think about Frances, as Joyce does about [her husband], whom she lost four years ago, but we're both happy and excited to be moving on with our lives."
Cynthia Ramnarace writes about health and families from Rockaway Beach, N.Y.