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Sean Rayford, For the Deseret News
Deb McQuilkin prepares to place flowers on the grave sites of her late husband, Robertson McQuilkin, and his first wife of more than 50 years, Muriel McQuilkin, Monday, Feb, 11, 2019, in Lexington, S.C. After Muriel was diagnosed with Alzheimer’s disease, Robertson McQuilkin left his position as president of Columbia Bible College in 1990 and cared for his wife until her death in 2003. The ethics of love and Alzheimer's is under debate.

SALT LAKE CITY — As his wife plunged deeper into the fog of Alzheimer’s disease a few years ago, Raymond Freer would occasionally invite another woman to attend a concert with him and another couple.

To passers-by, it might have looked like a date; Freer hadn't worn a wedding ring in 20 years because it had grown too snug. But on those evenings out, there was no spark that led to physical intimacy, and Freer was still married to Mary, whom he had first met when they were teens living on opposite coasts.

Still, the occasional companionship helped meet a need.

“When a person has advanced dementia, there is no social interaction, and you must seek it somewhere,” said Freer, 77, a Park City, Utah, resident whose wife died of cancer and complications of Alzheimer’s disease last week.

Freer is among people who believe that it can sometimes be OK for the spouse of someone with dementia to enter a new relationship while still married. But his is a position not universally shared, as Dan Gasby, of East Hampton, New York, recently learned.

Gasby, 64, the husband of lifestyle guru Barbara "B." Smith, who has Alzheimer’s disease, has been castigated on social media for having an “intimate relationship” with a woman who is helping Gasby care for his wife. Critics have said that arrangement amounts to having an affair in his wife's presence.

Deborah McQuilkin, a registered nurse in South Carolina, says one spouse’s illness is not an excuse for adultery. The second wife of a Bible college president who gained worldwide acclaim for resigning to take care of his first wife, who had Alzheimer’s, McQuilkin said the only biblical justification for divorce is adultery or abandonment. “If a spouse is ill, they have not abandoned you. They have become ill,” she said.

Sean Rayford, For the Deseret News
Deb McQuilkin poses for a photo near the grave sites of her late husband, Robertson McQuilkin, and his first wife of more than 50 years, Muriel McQuilkin, Monday, Feb, 11, 2019, in Lexington, S.C. After Muriel was diagnosed with Alzheimer’s disease, Roberston left his position as president of Columbia Bible College in 1990 and cared for his wife until her death in 2003. The ethics of love and Alzheimer's is under debate.

With the rates of Alzheimer’s disease expected to nearly triple in the next 30 years, the issue is one that will increasingly confront people of faith and many spiritual leaders aren’t prepared to deal with it, said Rabbi Richard Address, founder and executive director of Jewish Sacred Aging.

Most couples also aren't prepared for a situation like this to occur, but it’s a conversation that aging spouses should have, Address said. And spiritual leaders could help them by speaking about the issue, and perhaps even considering the establishment of a ritual that would allow the healthy spouse to date while remaining married, he says.

"Do we have a responsibility to talk about it? My feeling is yes, because our people are living it. And if you don’t address things that people are dealing with, you become irrelevant,” Address said.

Love in the age of Alzheimer's presents not just the ethical problem of beginning a new relationship while married, or divorcing an oblivious spouse, but also how to cope if a spouse with dementia becomes romantically involved with someone else, as happened to Sandra Day O'Connor, the retired Supreme Court justice whose husband developed an affectionate relationship with another woman at a nursing home.

'Subterranean grief'

More than 5 million Americans — 31,000 of them in Utah — are living with Alzheimer’s disease or another type of dementia. Over time, they will lose not only their memories and the ability to think and converse, but also the essence of what they brought to a marriage.

As Joan Gershman writes on the website The Alzheimer’s Spouse, “The person you fell in love with and married is disappearing. Ambition replaced by lethargy; humor replaced by anxiety and anger; intelligence replaced by cognition so slow and so impaired that they cannot follow a conversation; a memory so wrecked that they cannot remember what you said to them five minutes ago.”

In the case of the Gasbys, Dan Gasby’s daughter has said her stepmother’s condition has been reduced by the disease to “a physically strong toddler who speaks in gibberish.” Gasby, however, has continued to care for her at home, even moving from their waterfront home to a new property that is fenced to keep her safer.

In not divorcing his wife because of her condition, as evangelist Pat Robertson has said is acceptable, and continuing to care for her himself, Gasby is similar to Robertson McQuilkin, who resigned the presidency of Columbia Bible College and Seminary (now Columbia International University) in 1990 to care for his wife, Muriel.

" It was his heart's desire that she be on one side and I be on the other, and I said there's no way I'm doing that. "
Deborah McQuilkin

The average Alzheimer’s patient lives for eight years after the diagnosis. Muriel McQuilkin lived for 23 years, and her husband cared for her in their home until her passing in 2003. He published an account of his decision, “Living by Vows,” and later wrote a book about the experience, “A Promise Kept.”

He spoke candidly about the difficulty and loneliness, writing about a “subterranean grief that will not go away." But he said repeatedly, “If I took care of her for 40 years, I would never be out of her debt” and that caring for Muriel was the fulfillment of their wedding vows, “in sickness and in health.”

Two years after Muriel died, Robertson McQuilkin, then 78, married again, exchanging vows with Deborah, who had known the couple for 30 years. They didn’t begin seeing each other until a year after Muriel died, and Robertson McQuilkin wouldn’t have entered in another relationship while he was still married, believing that adultery is adultery, even if one of the partners has dementia, Deborah McQuilkin said.

"It doesn't matter what the diagnosis is, whether it's cancer or Alzheimer's or trauma,” said Deborah McQuilkin, 65, a registered nurse who has a doctorate in nurse practice.

Even after Robertson McQuilkin died, 11 years after their marriage, Deborah McQuilkin honored Muriel and Robertson McQuilkin's marriage in the burial arrangements she made in Lexington, South Carolina.

Sean Rayford, For the Deseret News
New flowers rest in a vase at the grave sites of Robertson McQuilkin, and his first wife of more than 50 years, Muriel McQuilkin on Monday, Feb, 11, 2019, in Lexington, S.C. After Muriel was diagnosed with Alzheimer’s disease, Roberston left his position as president of Columbia Bible College in 1990 and cared for his wife until her death in 2003. The ethics of love and Alzheimer's is under debate.

"It was his heart's desire that she be on one side and I be on the other, and I said there's no way I'm doing that," Deborah McQuilkin said.

"I released him to go back to her. They're in Heaven having a great time; their son is there, their grandson is there; they're having a great time."

She added, "I'll be cremated and sprinkled."

Difficult conversations

The Alzheimer’s Association, which estimates that 14 million Americans will have the disease by 2050, as baby boomers age, does not take a position on how couples dealing with dementia should navigate the ethical challenges surrounding a marriage. “Every family and family situation is unique,” said Ronnie Daniel, executive director of the association’s Utah chapter.

“The key is, encouraging families to have conversations, and the earlier the better, so they can plan for the future. That’s oftentimes what doesn’t happen — they haven’t had conversations, and the person with the disease gets to the point where they aren’t able to engage in meaningful conversation about what they want to have happen, and you end up having difficult situations.”

That’s also what Rabbi Richard Address tells groups that he speaks to as part of his work with Sacred Jewish Aging, based outside Philadelphia. The best time for couples to begin the discussion is when they begin to make other preparations for the end of life, such as preparing end-of-life directives and living or ethical wills.

But these are difficult conversations that, ideally, should involve the adult children of the couple as well, and couples should be prepared to grapple with the complexities and emotions.

“Not all families can do this,” Rabbi Address warns. “You can’t just sit down and say, 'We’re going to talk about this, and we’re going to have this decision by dessert.' It doesn’t work. Not in the Jewish community,” anyway.

In Park City, Ray Freer, who is retired from the real estate business, said this was not a conversation that he and his wife ever had. Having read about Dan Gasby, who said that having a new relationship gave him energy and enthusiasm that makes him a better caregiver, Freer said he would never condemn Gasby’s decision. “I would not discourage any person in a situation similar to mine from doing that kind of thing,” he said.

But he noted that Barbara Gasby’s disease is not as advanced as his wife’s was in recent years, when she was not capable of any kind of communication. The couple’s 50th anniversary passed two years ago with no celebration.

Rabbi Address says that the challenges of new relationships are often exhibited at family events. He recalled a bat mitzvah about a decade ago that was pocked with conflict because a man whose spouse had dementia wanted to bring a female companion and his children were opposed. “Family rituals, those are real flashpoints. Ask any rabbi. Ask any priest, minister, imam," he said.

" Is our personal happiness the goal of life? I don't think that is. "
Deborah McQuilkin

Rabbi Address tells synagogues that they should have forums every year on advanced directives and living wills, helping congregants begin to have these sorts of conversations. And he calls for more education and guidance for spiritual leaders.

“There is very little training on the part of clergy on how to talk to people, to counsel them in these new situations,” he said. “We do a really good job of premarital counseling if you’re 28 years old, but we don’t do a good job of training colleagues, regardless of the denomination, of dealing with a couple who’s in their 60s, 70s, 80s, and dealing with very different relationship arrangements, financial, familial, et cetera.”

In some liberal traditions, a faith group could devise a ceremony that frees a person married to someone with dementia to pursue another relationship, or still-healthy partners could sign an agreement releasing the other to a new relationship if severe dementia occurs, Rabbi Address has written.

But he cautions, “This is not for everyone. It’s always going to come down to personal choice.”

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To Deborah McQuilkin, however, it's not a question of choice, but of vows.

"Is our personal happiness the goal of life? I don't think that is," she said. And regardless of where people are in grappling with love and dementia, which she calls "the most difficult assignment of life," "there are people who will walk with us through it and help us," she said.

The Alzheimer's Association has a 24-hour hotline to help people struggling with issues related to dementia: 1-800-272-3900.