The Big Hush! Same-Sex Relationships in Long-term Care
June 2016 | Zoe Dearing, Alzheimer's Educator
Mary, a highly respected Ph.D. in Social Work moved into the long term care community where I worked in the early 1980s. In her younger days she was a strong advocate for equal rights- back in the ‘60s she marched proudly in the Civil Rights movement. I admired her. I could tell she was the consummate social worker. She was strong and vocal but very thoughtful with her words and actions; an advocate for anyone who was disenfranchised. She was friendly and nonjudgmental, but appeared to be a very private person. She was loved by all who knew her.
One morning I came to work and was told that Mary had tried to commit suicide through the night. It was a planned attempt. Everyone was shocked. No one could understand why she did it. She seemed to have adjusted to “nursing home life” just fine. She did not die, as she had wished. So, after “the incident” she was watched closely all the time, on suicide precautions. Her private life was now invaded and her dignity was disregarded. I found out later that Mary confided in one of my staff that she had a committed relationship with her beloved partner for over 30 years.
Mary missed her life companion so much that she could not imagine going through the rest of her life without her by her side. Of course, at that time policy dictated that a couple who lived together had to be married. So, Mary felt she had no options.
This began my awareness over thirty years ago that something was terribly wrong with the painful silence one had to endure because of a clandestine life as a LGBT person. I was stricken with sadness that a woman who had fought so hard for equal rights and acceptance of others could not live with her own authenticity.
Mary did not have dementia. She was able to voice her feelings and desires for her life determination, and yet, she didn’t feel she could. The BIG HUSH!
As my life work continued supporting people living with dementia I became very aware of the misunderstandings and resulting alienation and discrimination of elders with dementia, particularly those living with Alzheimer's disease. There are currently about 5.4 million people living with a diagnosis of Alzheimer’s disease. Statistics show that this number will double by 2020 and nearly quadruple by 2050. (2015 Facts and Figures, Alzheimer’s Association). Although there are no clear statistics indicating the number of LGBT individuals with Alzheimer’s disease, for a variety of reasons, it is a clear assumption that there are many.
In my nearly 40 years of experience working with elders, both as a professional caregiver and as a dementia care educator for the Alzheimer’s Association, I have rarely witnessed anyone who identifies as LGBT when they move into a LTC setting. Interestingly, we don’t even ask. Is it because we are embarrassed to ask? It should be a normal question asked within all the other important demographics we inquire from people when they enter LTC.
Regarding Alzheimer’s disease, it is clear that those who can no longer think clearly still maintain their ability to feel their full range of emotions. Tom Kitwood broke ground in this changing view of dementia care in his book “Dementia Reconsidered” (Open University Press, ©1997). He theorized that recognizing and supporting the ‘personhood’ of an individual is vital to that person’s wellbeing. His point was that people living with dementia still have the same needs of wellbeing, the acknowledgment of innate humanness through connection that every living person possesses.
So, for those who have dementia that affects memory, communication and other cognitive function, they often show their need for intimate connections through their actions. Unfortunately, it is common for their expressions of intimacy to be misinterpreted as inappropriate behavior.
The Alzheimer’s Quarterly printed the SAID survey (Staff Attitude about Intimacy and Dementia) in its 2002 publication. It presents scenarios to the reader to rate according to their own beliefs. The questions refer to the intimate and sexual experiences that may be observed in a long term care setting, many having to do with same sex interactions. When using this survey to educate staff on this topic, I have consistently seen how a person’s personal beliefs often coincide with the way they are willing to provide care and support for one’s right to intimate and sexual expression.
I have observed it in two different ways. Let’s say:
Two men are walking toward a bedroom with their arms around each other.
One assumption is that one of the men is gay and being an “aggressor” toward the other. Staff will perceive the situation as “bad” and be sure the two men are separated. Staff never seem to think of the possibility that each of the men is living in their memory of having a brother who was a true friend and protector, not related to being gay at all. Another assumption is that if the two men were married at any time in their lives, they would be straight and would not have experienced any same-sex relationships. Again, the couple would be separated because “they don’t know what they are doing.”
In both scenarios, staff would conclude that the interaction between the two men was inappropriate and should be stopped.
I could write numerous examples of similar assumptions based on a variety of situations. But, what I find to be so interesting is that the reactions of staff are not always based on overt discrimination. Many professional care partners have no grasp of the needs of any individual who is LGBT. It isn’t even in their realm of thinking, as if it doesn’t exist in everyday life. It tells me that most people don’t even have a perception of the feelings a person of the LGBT community experiences in their life. Any expression that hints of someone being LGBT is just considered inappropriate behavior!
If yesterday’s LGBT elders had lived in an environment where they were safe to live their authentic lives, this problem in LTC probably would not exist today. So, what was the “big hush” is now beginning to become a “soft whisper.” Hopefully as we continue to become more aware and embrace the diversity within our culture, without judgment, we will not be concerned with “why” a same-sex connection is being made. We will accept that it is the feeling being expressed as an intimate need for that moment. Then, the “soft whisper” will become a strong, although often silent, voice!