This is an interesting story about a pair of residents in a long term care facility. Both have Alzheimers disease. It is sad and emotional but it illustrates the plight of individuals in long term and how ignorance and and ageist attitudes can infringe on the rights and freedoms of seniors in long term care. Narrow minded and incorrect beliefs about aging, sexuality and morality not only infringe on human rights but also prevent individuals from attaining moments of happiness and contentment.
Long term care staff and families of residents need more education about Alzheimers and related dementias and how these illnesses can affect the sexuality of seniors. Families in particular need to understand how to handle their emotions when a parent or grandparent or even spouse develops desires and intimacy needs for another resident---one who is not mom or dad. Families need to understand the reality in which their loved one is now living. It's an excruciating process for families to disassociate the loved one they knew, from the loved one who doesn't recognize them anymore. Allowances have to be made to accomodate and acknowledge the sexual and intimacy needs of residents, allowing them freedom of expression all the while trying to find an ethical balance that works for the family. It's a very difficult and tenuous peace and much more work needs to be done in the area of freedom of sexual expression and intimacy of seniors in nursing homes.
My thanks to Kathy McDonald at HEARTH for sending me this article from Slate.
MCauch
SageHealth Network
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An Affair To Remember
She was 82. He was 95. They had dementia. They fell in love. And then they started having sex.
By Melinda Henneberger, Slate
Posted Tuesday, June 10, 2008
Bob's family was horrified at the idea that his relationship with Dorothy might have become sexual. At his age, they wouldn't have thought it possible. But when Bob's son walked in and saw his 95-year-old father in bed with his 82-year-old girlfriend last December, incredulity turned into full-blown panic. "I didn't know where this was going to end," said the manager of the assisted-living facility where Bob and Dorothy lived. "It was pretty volatile."
Because both Bob and Dorothy suffer from dementia, the son assumed that his father didn't fully understand what was going on. And his sputtering cell phone call reporting the scene he'd happened upon would have been funny, the manager said, if the consequences hadn't been so serious. "He was going, 'She had her mouth on my dad's penis! And it's not even clean!' " Bob's son became determined to keep the two apart and asked the facility's staff to ensure that they were never left alone together.
After that, Dorothy stopped eating. She lost 21 pounds, was treated for depression, and was hospitalized for dehydration. When Bob was finally moved out of the facility in January, she sat in the window for weeks waiting for him. She doesn't do that anymore, though: "Her Alzheimer's is protecting her at this point," says her doctor, who thinks the loss might have killed her if its memory hadn't faded so mercifully fast.
But should someone have protected the couple's right to privacy—their right to have a sex life?
"We were in uncharted territory," the facility manager said—and there's a reason for that. Even the More magazine-reading demographic that thinks midlife is forever (and is deeply sorry to see James Naughton doing Cialis ads) seems to believe that while sex isn't only for the young, exceptions are only for the exfoliated. We're squeamish about the sex lives of the elderly—and even more so when those elderly are senile and are our parents. But as the baby boom generation ages, there are going to be many more Dorothys and Bobs—who may no longer quite recall the Summer of Love but are unlikely to accept parietal rules in the nursing home. Gerontologists highly recommend sex for the elderly because it improves mood and even overall physical function, but the legal issues are enormously complicated, as Daniel Engber explored in his 2007 article "Naughty Nursing Homes": Can someone with dementia give informed consent? How do caregivers balance safety and privacy concerns? When families object to a demented person being sexually active, are nursing homes responsible for chaperoning? This one botched love affair shows the incredible intensity and human cost of an issue that, as Dorothy's doctor says, we can't afford to go on ignoring.
Dorothy's daughter, who contacted me, said that, in a lucid moment, her mother asked her to publicize her predicament. "We're all going to get old, if we're lucky," said the daughter, who is a lawyer. And if we get lucky when we're old, then we need to have drawn up a sexual power of attorney before it's too late. Who controls the intimate lives of people with dementia? Unless specific provision has been made, their families do. And for Dorothy, which is her middle name, and Bob, which isn't his real name at all, that quickly became a problem.
"Who do you love?" Dorothy asked me, right after her daughter introduced us. She'd married her first—and only other—sweetheart, a grade-school classmate she'd grown up with in Boston and waited for while he flew daylight bombing raids over Germany during World War II. Together they had four children, built a business, and traveled all over the world, right up until she lost him to a heart attack 16 years ago. But she never mentions him now and doesn't like it when anyone else does, either, because how could she not remember her own husband? Her daughter visits every evening, and because Dorothy loves kids, her daughter pays the housekeeper to bring hers over every afternoon, "and she thinks they're her grandchildren, and it makes her happy."
But even showing me around her well-appointed, little apartment in the nice-smelling assisted-living facility was an exercise in frustration for Dorothy: She joked and covered, but she might as well have been guiding me through Isabella Stewart Gardner's house, because all around were tokens from her past that have lost their meaning for her. There were tiny busts of Bach and Brahms, a collection of miniature porcelain pianos, Japanese woodcuts, and some Thomas Hart Benton lithographs she picked up for a few dollars in the '40s. "These are all my favorites," she said, pointing to shelves of novels by the Brontes and books about Leonardo da Vinci and Franklin and Eleanor Roosevelt. But her expression said that she couldn't recall why she liked these volumes best, and what I think she wanted me to know is that she once was a person who could have told me. When her daughter mentioned Bob's name—Bob, who was led away in January, shouting, "What's going on? Where are you taking me?" right in front of her—it wasn't clear how much she remembered: "He came and he went, and there's nothing more to say."
So it was left to her daughter, her doctor, and the woman who runs the assisted-living facility to explain how this grown woman, who lived through the Depression and survived breast cancer, managed a home and mourned a mate, wound up being treated like a child. "Come back anytime," Dorothy told me sweetly.
Downstairs, in her bright, tidy office, I met the woman who runs the facility—one of the nicest I've seen, with tea service in the lobby and white tablecloths in a dining room that's dressed up like a restaurant. In 30 years of taking care of the elderly, she's seen plenty of couples, but none as "inspiring" or heartbreaking as Dorothy and Bob. Which is why she keeps a photo of the two of them on her desk. In the picture, Dorothy is sitting at the piano in the lobby, where she used to play and he used to sing along—with gusto, usually warbling, "I dream of Jeanie with the light brown hair," no matter what tune she was playing. She is all dolled up, wearing a jangly red bracelet and gold lamé shoes, and they are holding hands and beaming in a way that makes it impossible not to see the 18-year-olds inside them.
Before Dorothy came along, the manager said, Bob was really kind of a player and had all the women vying to sit with him on the porch. But with Dorothy, she said, "it was love." One day, the staff noticed that they were sitting together, then before long they were taking all their meals together, and over a matter of weeks, it became constant. Whenever Bob caught sight of Dorothy, he lit up "like a young stud seeing his lady for the first time." Even at 95, he'd pop out of his chair and straighten his clothes when she walked into the room. She would sit, and then he would sit. And both of them began taking far greater pride in their appearance; Dorothy went from wearing the same ratty yellow dress all the time to appearing for breakfast every morning in a different outfit, accessorized with pearls and hair combs.
Soon the relationship became sexual. At first, Dorothy's daughter and the facility manager doubted Dorothy's vivid accounts of having intercourse with Bob. But aides noticed that Bob became visibly aroused when he kissed Dorothy good night—and saw that he didn't want to leave her at her door anymore, either. (Note to James Naughton: Bob did not need what you are selling.) His overnight nurse was an obstacle to sleepovers, but the couple started spending time alone in their apartments during the day. When Bob's son became aware of these trysts, he tried to put a stop to them—in the manager's view because the son felt that old people "should be old and rock in the chair." When I called Bob's son and told him I was writing about the situation without using any names, he passed on the opportunity to explain his perspective. "I don't choose to discuss anything that involves my father," he said, and he put the phone down.
But according to the facility manager, the son was convinced that Dorothy was the aggressor in the relationship, and he worried that her advances might be hard on his father's weak heart. He wasn't the only one troubled by the physical relationship. The private-duty nurse who had been tending Bob also had strong feelings about the matter, said the manager: "At first, she thought it was cute they were together, but when it became sexual, she lost her senses" for religious reasons and asked staff members to help keep the two of them apart.
Employees wound up choosing sides—as did other residents, including some women who were apparently jealous of Dorothy's romance. And because the couple now had to sneak around to be together—for instance, cutting out when they were supposed to be in church—their intimacy became more and more open and problematic. At one point, the manager had to make Bob stop "pleasuring her" right in the lobby, where Dorothy sat with a pillow placed strategically over her lap. In all of her years of working with elderly people, the manager said, this was not only her worst professional experience but was the only one that left her feeling she had failed her patients. She had a particularly hard time staying neutral and detached, she said, because she kept thinking that "if that was my mom or dad, I'd be grateful they'd found somebody to spend the rest of their lives with."
One day when Dorothy's daughter arrived to visit, she found Bob sitting in the lobby, surrounded by a wheelchair brigade of dozing people who had been posted around him by the private-duty nurse to block Dorothy from approaching him. That's when Dorothy's daughter got the state involved and started throwing around the word lawsuit, which only made things worse, the manager said. "Once she started talking legal, that pushed things over the edge." The state did send someone in to try to mediate the situation—but then the mediator was diagnosed with cancer and died just five weeks later. Though the mediator's replacement tried to pick up where he had left off, she was never able to establish a rapport with Bob's son.
Finally, Bob's family decided to move him and insisted that neither he nor Dorothy be told in advance. No one in either family was there the morning Bob's nurse hustled him out the door. Later, the manager called his son and asked if there was any way Dorothy might come and visit just briefly, to say goodbye. The son thought about it for a few days and then said no, his father was already settled into his new home and was not thinking about her at all anymore. The lawyers told Dorothy's family that there was no way they could make the legal case that Bob's rights were being violated by his family, because you couldn't put people with dementia on the witness stand.
Dorothy's son-in-law, who is a doctor, suspects Bob's son of fearing for his inheritance. Bob had repeatedly proposed for all to hear and called Dorothy his wife, but his son called her something else—a "gold digger"—and refused to even discuss her family's offer to sign a prenup. According to Dorothy's daughter, Bob's son told her, "My father has outlived three wives, including the one he married in his 80s, and your mother is just one of many." But surely Bob's safety was a true concern, too, and maybe his son had religious or moral qualms? "I don't think so," the manager said. "I don't think he meant his dad any harm, but he couldn't see what his dad needed. … He wanted his dad to have a relationship but on his terms: You can sit together at meals, but you can't have what really makes a relationship, and be careful how much you kiss and don't retire to a private place to do what all of us do."
Though Dorothy might or might not remember what happened, "there's a sadness in her" that wasn't there before, the manager said. Bob "gave her back something she had long lost—to think she's pretty, to care about her step and her stride." She eats in her room now rather than in the dining room where she shared meals with Bob. And she no longer plays the piano. A new couple in the facility has gotten together in the last few weeks. The manager called their families in right away and was relieved to see that they were happy for their parents, and the families have been taking them on outings together. As a result of the whole experience, the manager, who is 50, recently had a different version of "the talk" with her 25-year-old daughter, instructing her never, ever to let such a thing happen to her or her husband: "I hope I get another shot at it when I'm 90 years old."
Dorothy's doctor also took their experience personally. "Can you imagine as a clinician, treating a woman who's finally found happiness and then suddenly she's not eating because she couldn't see her loved one? This was a 21st-century Romeo and Juliet. And let's be honest, because this man was very elderly, I got intrigued; my respects to the gentleman." His patient was happier than he could ever remember; she was playing the piano again, and even her memory had improved.
And though the doctor never laid eyes on Bob, in general, he said, the fear of sex causing heart attacks is wildly overblown: "If you've made it to age 95, I'm sorry, but having sex is not going to kill you—it's going to prolong your life. It was as if someone had removed the sheath that was covering [Dorothy], and she got to live for a while." But after the trauma of losing Bob, Dorothy's doctor came close to losing his patient, he said, adding that most people her age would not have survived the simultaneous resulting insults of depression, malnutrition, and dehydration. "We can't afford the luxury of treating people like this. … But we don't want to know what our parents do in bed."
Then the daughter interjected that Bob's son certainly didn't want to see them having oral sex, and the doctor proved his own point. Holding a hand up to stop her from saying any more, he told her, "I didn't need to know that." But maybe the rest of us do.
Melinda Henneberger is a Slate contributor and the author of If They Only Listened to Us: What Women Voters Want Politicians To Hear.
Article URL: http://www.slate.com/id/2192178/
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