This is a love story – but one with the kind of anguished twist that millions of Americans must grapple with.
“Betsy, Betsy, Betsy, I love you,” Frederick “Pete” Peterson, now 84 and living in an assisted-living facility in Peabody, used to say, before Alzheimer’s disease slowly stole his brain.
Betsy and Pete Peterson met decades ago when Pete, then an English teacher at Phillips Academy in Andover, hired Betsy to help him run the school’s summer enrichment program.
He was tall, handsome and charming – a recreational sailor with a warm smile and a firm handshake. She was pretty, bright and vivacious. They worked together for a few years until Betsy left to become the first woman dean at Yale College. Then, after Pete’s first wife died, Betsy and Pete saw each other again – and married 22 years ago.
Now, it’s been ages since Pete called Betsy by name. “I miss that,” said Betsy, 62, who lives alone in the couple’s Boston condominium. “After a while, you realize you haven’t heard it. It’s the sort of non-event that marks the transition” from a marriage of soulmates to a strange limbo in which one spouse is alive but has lost much of his personality, while the other is essentially widowed – but without the closure, the rituals that foster healing, or the freedom to rebuild a life.
For years, psychologists had no name for the anguish of situations like that of Betsy. Now they do, thanks in part to Pauline Boss, a psychologist in the department of family social science at the University of Minnesota.
In her book, “Ambiguous Loss,” published by Harvard University Press, Boss explores the corrosive uncertainty and deep confusion faced by people who have lost, yet not quite lost, someone or something dear to them.
Sometimes, the loss occurs when a spouse has Alzheimer’s disease, or a stroke or other brain injury that leaves them alive but “not there.”
Sometimes, it’s the reverse – a loved one is physically absent but psychologically present, as happens, for instance, when children are abducted or vanish.
In fact, that’s exactly what happened 49 years ago to Betty and Kenneth Klein, now 75 and 83, whose three young sons – ages 4, 6 and 7 – simply disappeared one Saturday morning from a playground near their home in Minneapolis.
At the time, the Kleins also had one other son, age 9, and a baby on the way. After their sons’ disappearance, they went on to have three more children. But even a half-century later, their loss is as vivid – and perplexing – as ever.
When a reporter calls, for instance, Kenneth quickly summons Betty to the phone, hope and fear in his voice: “It’s about the boys.” She picks up the phone – and the story. To this day, she said, every time someone walks by or a strange car pulls into the driveway, “I always think, `Is it one of my boys?’ “
She and Kenneth have dealt with their baffling loss by praying, not blaming each other, and sticking together “very tightly,” she said.
The issue of ambiguous loss first intrigued psychologist Boss when she studied the families of pilots who had been shot down over Vietnam and were declared missing in action.
She said she found that, in contrast to more clear-cut losses, such as the death of a spouse, ambiguous losses can be even “harder to deal with because there is no closure, there’s no death certificate, there’s no public validation that this has ended.”
Carol Wogrin, a nurse, clinical psychologist and executive director of the National Center for Death Education at Mount Ida College in Newton, said that “one of the tasks of grief is really knowing that that loss has occurred. Even with a loss as clear cut as a death, she said, people often acknowledge the loss intellectually long before they really know it emotionally.
With a more ambiguous loss, emotional understanding can be harder because, Wogrin said, “a person doesn’t have all those factors that help reinforce” the reality.
It’s dangerous to get into the game of “competitive grief,” downplaying someone else’s pain because you think it’s not as bad as your own, warned Deborah Rivlin, a consultant at the Good Grief Program at Boston Medical Center, a nonprofit program that teaches grief education to children.
Still, she said, ambiguous losses can be particularly difficult, especially because, at least initially, other people may not recognize them clearly as legitimate losses. Many situations, including gradual changes like physical decline or being pushed aside at work, fall into this category.
For instance, parents who have had a stillbirth or lost a hoped-for baby to miscarriage may suffer grief that is all the more painful because the rest of the world fails to acknowledge it. This grief may even be compounded if, as used to happen routinely in hospitals, the “remains” of that pregnancy are whisked away, leaving no tiny body to cry over or bury.
But other situations may also provoke the same kind of long-term, wrenching ambiguity.
It can happen in families in which one member is an alcoholic or addicted to drugs. It can happen to children of divorce who may grieve for the death of the family, even though both parents are present in their lives. And it can happen to spouses of workaholics, who may be home in body, but whose minds are chronically at work, Boss said.
The toughest issue, she said, is the question of how not to become “frozen” in grief and how – and when – to move on.
The Kleins of Minnesota managed to move forward by realizing they had to be strong for their other children, Betty Klein said.
But does moving on, in cases where one spouse has Alzheimer’s, mean that it’s OK for the healthy spouse to form a new romantic relationship?
That issue comes up often, said Paul Raia, a psychologist at the Massachusetts chapter of the Alzheimer’s Association. “The men in my support group will date while the wife is still alive, though it’s very controversial in the group,” he said. “I have never seen a woman do that.
But other mental health specialists, including Dr. Bessel van der Kolk, professor of psychiatry at Boston University, don’t see such a clear gender breakdown on this issue.
“People need to go on with their lives,” he said, though forming a new relationship “raises enormous moral questions.” If the relationship includes sex, he said, it often generates considerable guilt. But short of that, he said, “it’s amazing how many different arrangements people make: Many people find people who meet their emotional needs.”
Betsy Peterson has tried to do just that, learning, as she puts it, “to be a widow” even though Pete is still alive.
She said she feels “very married” to Pete, still works part time as a lawyer and has “reached out a lot in the last few years,” especially to members of her church and book groups.
Even so, it’s tough. But one thought never fails to boost her spirits: “Knowing Pete has been such a gift. His friendship was such a gift. Our marriage is the best thing that’s happened in my life, so I am still ahead, even at this stage. That sense of the gift is one of the ways I get through it.”