It’s private and few people discuss it openly. Couples who’ve spent decades together as lovers and equals — husbands, wives and partners — increasingly take on the roles of caregiver and patient as Alzheimer’s disease progresses. Sex and emotional intimacy give way to an all-consuming responsibility. During those difficult months and years, the still-healthy partner may ache for someone with whom to talk, share a restaurant or movie date or have a physical relationship.
[See: 14 Ways Caregivers Can Care for Themselves.]
Little social support exists for married caregivers who seek an intimate partner. Issues of faith, or concern over of the reactions from other family members and friends, cause people to bottle up these desires, says Donna Schempp, a licensed clinical social worker and consultant at Family Caregiver Alliance.
“It’s never talked about because it’s so outside the norm,” Schempp says. But some people do confide in a therapist or other trusted health provider. “In the work I’ve done with people with dementia, any number of [spouses] have talked to me about wanting a relationship outside their ongoing marriage,” she says.
Of those with whom Schempp has spoken, men and women are about equally likely to try and find a new partner to fill the void of emotional, psychological and sexual intimacy. When these relationships occur, she says, the spouse with dementia is more likely to be living in a long-term care facility rather than at home.
As a professional, Schempp says her role is to listen, provide support and respect whatever decision people make. Before judging, she says, “People need to know the level of grief, frustration and isolation that caregivers are experiencing, and how strong their needs are for support.”
[See: How Social Workers Help Your Health.]
In early 2003, Eric and Gaye Reeves learned that Gaye had Alzheimer’s disease. At the time, Gaye was 49 and Eric was 50. She had originally been diagnosed with depression overseas, but the couple received the definitive, chilling news when they returned to Colorado Springs, Colorado.
Eric’s initial reaction was “disbelief,” he says. But denial soon became impossible. “As the disease progressed it was a helpless kind of feeling,” Eric says. “Being a man, I wanted to fix it. I wanted to make it better; I wanted to slay the beast. You just couldn’t. There was nothing I could do. I just felt so helpless.”
Eric struggled to work full time while providing care for his wife at home. Finally, he says, “One day I came home and she wouldn’t let me in — she didn’t recognize me.” The family tried to situate Gaye in an assisted living facility, Reeves says, but it quickly became apparent that she needed to move to a memory care unit. Challenges included liquidating the couple’s assets to afford care and getting Medicaid approval.
Living alone, Eric began to fall apart, he says. “My daughter said I was on a downhill path,” he recalls. “I was out riding my motorcycle quite often; going out drinking. She just recognized it as eventually leading to a problem.”
About two years after Gaye went into the nursing home, Eric’s concerned children, as well as his mother-in-law, suggested an unorthodox solution: He should reach out and find companionship. For a long time he resisted. “But as time progressed I admittedly was lonely and needed a partner of some sort,” he says.
Eric put a listing on Match.com and connected with the woman who would eventually become his second wife. At their initial Starbucks meeting, he explained his situation. Tami Haptonstall Blake, his date, who happened to be a registered nurse, was understanding. “Maybe I was the forlorn puppy, but it worked out well,” he says.
As the relationship developed, Haptonstall Blake accompanied Eric on nursing home visits, and sometimes went on her own to read or sing to Gaye. Although his family accepted the couple’s relationship, he says, others frowned on it, including some nursing home staff members.
In April 2010, Gaye Reeves died. Later that year, Eric and Tami Reeves were married with “urgings and blessings from all family members,” he says. They live in Germany where Eric, now 64, works as an engineer on a military air base. Tami has since chronicled the couple’s hurdles in her book, “Bleeding Hearts: A True Story of Alzheimer’s, Family, and the Other Woman,” published in 2015.
Risking disapproval was worth it, Eric says. For other people in similar situations, he says, his advice would be this: “They should follow their hearts and do what they believe is true.”
It’s not only caregivers who have unmet needs. Sometimes it’s the partner with dementia who develops an intimate relationship outside of the marriage, says Ruth Drew, director of information and support services with the Alzheimer’s Association. That might take place in the context of long-term care, she says, as residents form attachments among themselves.
Such relationships aren’t terribly unusual, Drew says, although family members may be surprised or upset. “Of course, [Alzheimer’s] affects memory and it also affects all the other parts of our brain,” Drew says. “And yet, in the midst of the disease, a person with Alzheimer’s still has a sense of self and still has a need to connect with others.”
Drew also hears from Alzheimer’s caregivers who have contemplated extramarital relationships. “People who are going through this are hungry to talk about it,” she says. For instance, one woman described feeling extremely isolated because her whole life was wrapped around caring for her husband.
“When one has Alzheimer’s, that affects the intimacy and the partnership that was there in a marriage,” Drew says. “And people react in different ways. Sometimes they look to someone outside of the marriage for that ongoing connection.”
[See: 11 Things Seniors Should Look for in a Health Provider.]
The dilemma of devoted caregivers who crave intimacy that spouses can no longer provide them isn’t going away, says Rabbi Richard Address, director of Jewish Sacred Aging. He travels to congregations in the U.S. and Canada to conduct workshops for baby boomers on implications of the “revolution in longevity” — the rising number of adults reaching their 80s, 90s and becoming centenarians.
Congregants who pull Address aside to relate their experiences describe feeling terribly conflicted. “I’m torn with guilt because I still love my spouse,” he often hears. Others say things like, “You know, my spouse is never going to come out of that memory care unit. I’m 70 years old. I’m healthy.” These people find it harder and harder to come home to an empty house every night.
The outside relationship they seek is not necessarily sexual, Address emphasizes. “Those categories of spiritual, emotional and physical companionship are what it’s really about,” he says. “It could be any one of those, or all three.”
Although adult children of the couple may not be thrilled, Address says he’s finding more and more are able to understand and accept a parent’s new relationship.
“It’s not for everybody,” Address notes. “I’ve had people say, ‘I took a vow under the chuppah [wedding canopy] in sickness and health … I’m dealing with it.’ That’s perfectly valid and to be honored.” However, the rabbi adds, “The next person says, ‘I took the same vow, but it’s a different situation. And this [caregiving] is something that can last 5, 10 or 15 years.'”
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When the Partners of Alzheimer’s Patients Seek Other Companionship originally appeared on usnews.com
