Confronting Taboos

I’ve been asked to do a keynote address at a State association meeting in Nebraska in March and I’ve been thinking about what to do with the hour that they’ve asked me to fill.  The title I’ve come up with for my talk is “Unspeakable” and it will cover five realities of older adults that no one wants to talk about.  Those are, in no specific order, loneliness; elder abuse; sexuality; LGBT and ageism. It’s been interesting to hear people’s reactions when I tell them about my topics, interesting the ones that they seem to “get” and the ones that seem puzzling.

One of the most “puzzling” seems to be sexuality and the question was actually raised to me as to “why it would matter” for older adults. “After all,” the person said, “aren’t old people just like roommates?”  It was an “ah ha” moment for me because I realized that, even folks who should know, don’t really fully understand these topics.

One of the things we know conclusively is that touch is the last sensation that people lose, even when their lives are impacted by physical and/or cognitive impairments.  We say the same thing to families that is said to parents of premature newborns, telling them to just touch their loved one’s skin, stroke them gently, hold their hand, all so that they know you are there.

So why would we think that physical intimacy and physical pleasure would be lacking in older adults?  Granted, age does have an effect but it does not eliminate the desire or value of being close to a person that you care about.  In fact, a quick scan of the Internet will show you any number of books and articles about sexuality and older adults, including information from the National Institutes of Health.

Yet there are those who believe that individuals who live in any kind of communal or care setting should be denied the right to have physical relationships.  I have seen it happen with family members who will try to separate a couple, if one of them has cognitive impairment. Still other families struggle with relationships that develop where their parent finds a new partner, regardless of whether the other parent has passed away. I have even seen situations that are a second marriage or a long term relationship that children, from a previous marriage, try to disrupt when one or both of the couple move into a facility setting.

The case that often comes to mind for me is that of Henry Rayhons of Iowa who was arrested in 2014 for having had sex with his wife, who lived in a nursing home.  While the wife had cognitive impairment, she always showed affection and positive emotions when her husband of many years made his daily visits.  Yet her child, from her first marriage, objected and influenced the nursing home to prohibit the couple from continuing their long term relationship.  Mr. Rayhons’ continued visits, and occasional private moments with his wife, resulted in his arrest.  He was acquitted but not without having had to endure the legal process and the trauma that accompanied it.

In most cases, the objections that are made come from a place of caring.  I understand that.  But I also think it is misguided caring in some respects.  Regardless of age, individuals have rights and the right to have a relationship with whomever they choose feels to me like a civil right.  Older adults living in a communal setting are not children, they are not “objects” or “problems” or “them.”  They are human beings who have lived long lives and are entitled to respect, dignity and choice.

So what happens if someone is cognitively impaired? Would they still have the right or the ability to make that decision?  The real question is whether someone has the capacity to make a decision at that moment.  It’s an inaccurate assumption to think that someone with dementia cannot make choices because they can and do in many cases. Even people who have significant cognitive losses can make choices, indicating their preferences even when they no longer have the ability to say the words.

As a staff, our role is not to judge or to layer our own emotions or biases into the situation.  Our role is to enable and facilitate choice, to understand that privacy is an entitlement and that emotional, as well as physical, connection is a need.  To do less is ageism, writing people off because of their years, minimizing their existence and denying their basic human rights.