Sex and Senility
Melinda Henneberger takes readers' questions on romance among dementia patients.
Slate contributor Melinda Henneberger was online at Washingtonpost.com to chat with readers about how to handle sexual relations among elderly family members with dementia. An unedited transcript of the chat follows.
New York: The story you report—"An Affair to Remember"—is not as uncommon as you might think. I have myself as caregiver—not only to parents in a fairly upscale retirement/continuing care communities, but to a host of aunts and uncles as well—have witnessed at least five instances/cases of such love affairs among residents. Sometimes both parties had some form of dementia, and at other times only one, but the ending was always the same: Management forced them apart and one of the "offending" parties was whisked away, never to be seen again. It was always done with terrible cruelty.
Part of the problem, I think, has to do with the enormous veneer of respectability promoted by these often for-profit institutions, and the pressure it puts on the elderly to "behave" and fall in line. They have to keep the picture "pretty." If we had communities in which the instincts of all residents were respected, and ways were found to give even those suffering from dementia privacy, respect and the help and support they needed, perhaps the outcomes would be different.
And yes, sons and daughters add to that pressure to keep their parents "in line" because they fear their parents being ejected. Even in your reporting, there is the aura of a kind of voyeurism ... a tattle-tone. Astonishment and a bit of horror. What a pity.
Melinda Henneberger: My only horror and astonishment was in the outcome, the way this couple was treated. Maybe we need to look again at what our definitions of "pretty'' and "respectability'' are, and think again about who we are trying to protect, and from what.
New York: This story is unbelievably tragic. May Bob's son's children be kinder to him than he was to Bob.
Melinda Henneberger: Yes, it is tragic, perhaps especially because I don't think Bob's son ever intended to hurt his father. But it's also a situation we can avoid with some advance planning and important—even if uncomfortable—family discussions. The woman who runs the assisted living facility where Bob and Dorothy fell in love has been clear now with her own grown daughter that she never wants to be in that position, for example, so some good did come of this.
New York: As a lawyer who represents many elderly people, some of whom eventually have gone to live in assisted living facilities or nursing homes, I have seen this issue arise several times. The key issues are the perspective of staff and the religious orientation of the facility. Most of the "children" seem okay with the relationships—and they uniformly do seem to vastly improve the spirits, outlook and well-being of the couple—unless there is an element of unwanted attention.
The most difficult problem seems to be that—at some higher levels of dementia—a person often will welcome (or reject) any attention, and it is impossible to know whether a person suffering from dementia might not actually want to go "all the way." So there is the peculiar issue of "date rape," in the sense that an excited elderly person could take sex to a higher level than the partner expected or was ready for. In order to monitor this, staff would really have to become professional sexologists—but they might think of themselves in the less glamorous role of voyeurs.
Melinda Henneberger: Yes, I can see that informed consent really is a complicated issue. It's certainly unrealistic to think that every worker in such a facility would be a trained counselor—especially given the appalling overall conditions and low wages in a lot of these places. But ideally there should be someone on staff with the sensitivity and training to help residents and families work through these issues.
Richmond, Va.: Do you think this is indicative of our culture's lack of respect for the elderly? Do you think that this kind of situation occurs in other countries with better track records of elder care and reverence (i.e. Japan)?
Melinda Henneberger: Yes, and in a broader sense it's indicative of our culture's lack of respect, period. In Europe, where it's still so much more common for older family members to live with their grown children, this situation may not occur in quite this way in part because they're not living in the senior equivalent of a college dorm. But in this country we're also peculiar of pretending that romance is mostly for kids, which is certainly not the case elsewhere in the world. I guess we have begun to believe that the people in those airbrushed ads actually exist somewhere.
Concord, N.H.: That was just heart-breaking. Bob's son also seemed to be carrying some residual disgust regarding his father being married three times. You said he didn't mean to cause his father any pain, but he was incredibly unkind—not just in taking him away from Dorothy, but also in the way he chose to express his reservations. They say a lot about him and his relationship with his father. I guess it's true—be careful how you treat your children, because someday they will be taking care of you.
Melinda Henneberger: Yes, his comment about his father's marital history did suggest he had some issues with Dad. I am just trying not to judge him too harshly because I never got his perspective on the thing, and there are always at least two sides...
Arlington, Va.: I faced a similar issue with my mother as her mind failed. With her, it was masturbation. Part of the problem is that children have a very hard time dealing with the sexuality of parents at all. In this case I had to remove myself from a primary caregiver position and let someone with more emotional distance deal with it.
Melinda Henneberger: Thanks for this comment; I can't imagine that anyone would have found a situation like the one you had with your mom comfortable, but the more we get these issues out in the open—so that they don't come as such a surprise—the better. And it sounds like your decision was a very loving and wise one.
Rosslyn, Va.: It is a shame that Bob's son could not accept his father's relationship. A couple lived in the assisted-living facility where my aunt lived for nine years (and passed away last year), on different floors. The wife had Alzheimer's but the husband did not. It was so touching to see them together. He was so solicitous of her. Eventually it became too expensive to keep them both there, and he had to go with his family. It was very sad. I don't think she really knew at that point, but it's something I still think about. All of use should be treated with dignity and respect for our feelings. It's too bad Bob's son didn't see it that way.
Melinda Henneberger: Several members of my family have suffered from that awful disease, including a first cousin who was diagnosed in her 40s. But both my cousin and her mother had husbands who came to see them every day, talked to them, read to them, loved them—and in my cousin's case, fattened her up on ice cream!—and there is no way that they did not feel that love.
Washington: I can't help interpreting the actions of these elderly people as I would children. I know it is irrational and disrespectful, but my visceral reaction is the same as if I found two 11-year-olds "playing doctor."
Melinda Henneberger: You're certainly not alone in this, and at least are aware of it! It's no wonder that's such a common reaction, given that our PR culture sends so many disrespectful messages about old people. As our population ages, though, surely these will no longer be tolerated. And sorry, here I go, getting all political, but how absurd, for example, that the electoral problems in Florida in 2000 and again in 2006 were at least initially written off as just a bunch of oldsters too muddled to cast their ballots properly.
Melinda Henneberger writes columns for Commonweal, the Catholic opinion journal. She was previously a reporter for the New York Times and contributed to Newsweek. She is the author of If They Only Listened to Us: What Women Voters Want Politicians to Hear.