Till Dementia Do Us Part?

For 10 years, A.B. Amis shepherded his wife, Frances, through the dark maze of Alzheimer's disease.

He was there through the early stages, when they laughed over Frances' locking her keys in her car, or forgetting a friend's name. But slowly the signs became unavoidable. Always the trusted copilot on their frequent road trips, Frances could no longer read a map. Once a master gardener, Frances slowly abandoned the hobby. The landscaping on their Grant, Fla., home soon deteriorated to bland, basic upkeep.

All the responsibilities Frances had maintained through nearly 60 years of marriage—paying bills, making appointments, housekeeping, cooking—fell to A.B., now 82. He accepted his new role without complaint, even as he found himself feeling less like a partner in a marriage and more like a father parenting a child. Frances needed help in the bathroom. She could get her nightgown over her head but was confounded by the arm holes. She forgot how to properly handle a fork and knife, leading to lots of spilled food. Eventually, her husband's steady hand was necessary if she was to eat.

The job of caregiver was tough, the hours long, the emotional toll enormous. A.B. watched as Frances disappeared little by little. This slow death left A.B. both immensely sad and incredibly lonely, very typical emotions for a caregiver.

"Caregiving is overwhelming, and there's no reward," says geriatric psychiatrist William Uffner, M.D., medical director for the Older Adult Program at Friends Hospital in Philadelphia. "Sometimes you wind up doing things that you would do for your 6-month- or 3 1/2-year-old child."

But a caregiver of older people doesn't get the positive feedback a child gives—growth, development, a glimpse of a future, Uffner says. Confronting a progressive series of losses is just incredibly disappointing. "And then you don't even have your husband or your wife when it gets too frustrating and you have a meltdown," he says.

A new friend

Enter Joyce, age 83, a lifelong friend of A.B. and Frances. Joyce, a widow, regularly joined A.B. and Frances for weekly lunches out. But once Frances became unable to go to restaurants, A.B.—at his son's urging—summoned the courage to ask Joyce to join him alone for lunch and, eventually, out to dinner, a little dancing, the occasional movie.

It is not at all uncommon for a caregiver to take on a "paramour," as Uffner calls it. And in many cases, entering into a new relationship can give the caregiver the strength he needs to shoulder his growing responsibilities.

"Most of the people who do those things are not abandoning their spouse," says Uffner. "It can actually be something which allows them to maintain the caretaker role in the most responsible way possible. It stops them from getting depressed, and it stops them from being too isolated."

Such an arrangement can also provide caregivers with positive feedback. They have someone who thinks they're attractive or interesting, someone to talk to about daily life, says Uffner. "Those are the things which keep us going as human beings," he says.

A different kind of arrangement

In all likelihood, this Three's Company scenario will only become more common. An estimated 5.3 million Americans have Alzheimer's disease. And as the number of people over age 65 increases, the prevalence is expected to increase by 50 percent over the next 20 years, according to the Alzheimer's Foundation.

Once A.B. started exploring his friendship with Joyce, days became less monotonous. A date on the calendar meant he had something to look forward to again. He had a companion to talk to, someone who shared his history as well as his love of corn bread and black-eyed peas. And while they never "crossed the line of decency," says A.B., he did discover how deeply he had missed being touched—holding hands, being hugged and kissed. Legally and, even possibly, morally, A.B. was cheating. But he did not feel guilty. His new relationship wasn't born of selfishness. It came from a need to survive.

"The relationship gave me hope," A.B. says. "It let me believe there was a future. By that time, I had accepted that Frances was going to die. The time was going to come, and I did not, could not, visualize myself just being alone afterwards."

When the marriage dies long before your spouse does, the result is an avalanche of emotion that can leave a caregiver depressed, depleted and isolated. Reaching out to another person for comfort is the caregiver's way of choosing to live life, says psychologist Dorree Lynn, author of Sex for Grownups.

"It is a very normal and natural progression for a caregiver to find someone to have a relationship with," says Lynn. "It's a proven fact that people who are touched, including babies, live longer. We are social creatures. We need that physical connection."