Wednesday, November 14, 2007

Sandra Day O’Connor’s Love Story

The O’Connor family shared a unique love story with the world this week.

The story begins as so many heartbreaking family stories start: with a diagnosis of Alzheimer’s disease, and the family’s decision to find an appropriate care setting.

The O’Connor family chose to have John, Supreme Court Justice Sandra Day O’Connor’s husband of more than 50 years, cared for in an assisted living community that specializes in memory care. Justice O’Connor could not provide the care her husband needed herself (although she apparently did bring him to work with her several times before her retirement in 2005). So she chose the best alternative possible – an experience thousands of families face each day.

The beauty of this love story is that the decision, while challenging, has worked for this family – but certainly in a way none of them could have anticipated.

Mr. O’Connor fell in love. He fell for another resident, and, in the words of the family, “became like a teenager in love.”

Here’s the dilemma I find in this story: both the family and the assisted living community have chosen to place increased public awareness over the confidentiality rights of the individual (John and his new friend, in this case) to shine light on a very little known or accepted part of the process of memory loss.

Both John and his new sweetheart are identified and shown on network television. The camera follows them around the building and grounds, holding hands and sitting close to each other.

The family is not only fully aware, but supports the comfort and joy that this new relationship has brought Mr. O’Connor.

I have somewhat mixed feelings about this story. One the one hand, I remember too well incidents in our own communities where a married resident would form an attachment to another resident, and would suddenly “bloom” (like a teenager in love) as he sat next to his new friend, holding hands or with arms entwined.

And the spouse would be stopped at the door while staff members quickly ran back to separate the resident from his new love.

Most of the time this happened because the spouse would demand that her husband (it was invariably a wife who was still functional and independent) be kept away from “that woman.”

Staff nonetheless realized that the resident had a right to companionship of his choosing, too, setting up a very uncomfortable situation for everyone involved.

Then there was the situation of the female resident who was an early onset Alzheimer's patient, physically healthy and robust but mentally very impaired. This woman would literally go bed to bed, varying partners as the whim seemed to strike her. Staff would try desperately to intervene and divert her, but she succeeded in making many male residents very happy before we finally stumbled on a solution: help her bond with just one male resident who was available and eager to have a partner, too.

Throughout this process we had many red-faced conversations with the resident’s daughters, with the families of the participating male residents, and with staff, some of whom were determined to prevent what they considered to be immoral and unacceptable behavior. We had to provide many training sessions for staff, and help them understand that they simply could not force their own moral standards on anyone, especially on residents in their care.

Throughout it all, however, we fiercely protected the privacy of everyone involved. Even for the education of the public, I don’t believe we would have shared this resident’s story.

And that leaves me somewhat ambivalent about the O’Connor family’s decision to share their own story.

While I applaud the openness and acceptance of the family and staff, I’m concerned for the individuals who are on display. Many people with memory loss have moments of clarity – will those moments cause these individuals to become anxious, concerned or fearful about their behavior, perhaps without understanding why?

It is my hope that the love, compassion and understanding of the family and the staff will compensate for the loss of privacy that the individuals are experiencing by making their story a public event. But I can’t help but wonder if this were my husband – or my father – what choice would I make?

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