How We Tell Our Story

This past weekend I had the opportunity to attend a wonderful evening of community theatre. Five one-act plays, produced and performed by some great local talent were presented and they ranged from the dramatic to the comedic, all done with professionalism and skill.

One of the plays really stayed with me and has caused me to both think about it and talk with others about both the content and approach. The story was of two sisters, the husband of one of the sisters, and their mother. From the opening, it was evident that the mother had dementia and that the family was struggling to manage her care. The husband told his wife that she couldn’t live with them, that they, essentially, did not want to be “stuck” with her.

When the other sister arrived, with the mother, it reinforced the assumption of the mother’s condition.   The mom’s white slacks were stained and one of the daughters said, “Weren’t you wearing those same slacks yesterday?” The story then moved to a central incident. The mother clearly lived in a nursing home or assisted living setting and the facility had called the family to talk about an event that had occurred. The mother had been “keeping company” with one man, whom she could describe but not name. She had also become friendly with another man. On a recent evening, one man was visiting her and the second “suitor” came to the door. An altercation of some sort took place between the two men and the family had been contacted about it.

From the perspective of someone who works with older adults, none of that seems implausible. We know that as people live longer, with more complex medical conditions, the incidence of dementia continues to rise. In most long term care and assisted living communities today, a significant number—often a majority—of the residents have some level of dementia. We also know that dementia is a family diagnosis—it impacts every member of a family, with a ripple effect far beyond the individual with the disease.

So, all of that is fine, right? But what was not right, at least to me, was the interaction between the daughters and their mother and their behavior towards their mother. Both sisters were angry, screaming at the mother, demanding she remember things, not repeat herself, give them details about these men and about the incident that she was clearly incapable of providing. The anger escalated and escalated and one sister, screaming, stormed out of the scene. The sister who was left continued the anger and the accusatory tenor with her mother.

Do we see families get angry at their loved ones? Rarely. Do we see a lack of understanding of dementia and how It impacts people? Of course we do. But what we also see, and what we help to support, is the understanding that this is the disease. This is not your loved one’s choice. This is not how they would behave had they control over their behavior. There is a tremendous grieving process when you are on this kind of journey with your loved one. The person you once knew, the person you relied upon, is gone. And this new person, who looks familiar but frequently is not, is a stranger.

I understand people who say “I wish you had known her when.” I understand those who long “to have my mother/father back.”   I understand that there is grief and loss and sometimes guilt along the way. But anger, screaming, demanding things from a person who cannot possibly give them—well, that crosses the line into verbal abuse. It’s not the way we want our loved ones to be cared for, it’s not the focus we have or we teach and modeling that—on the public stage—is just not the way to move our understanding forward.

About the Author
Carol Silver Elliott is President and CEO of The Jewish Home Family, which runs NJ's Jewish Home at Rockleigh, Jewish Home Assisted Living, Jewish Home Foundation and Jewish Home at Home. She joined The Jewish Home Family in 2014. Previously, she served as President and CEO of Cedar Village Retirement Community in Cincinnati, Ohio. She is chair-elect of LeadingAge and past chair of the Association of Jewish Aging Services.
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