Small Victories in Dementialand

I try to respect people’s privacy. Within my blog, I change names and identifying details of individuals. And, when possible, I ask for permission to tell stories.

Almost without exception, people want their stories told. They are excited about the possibility they have had an insight or experience that others might find interesting or useful. They may not want their names given, but they want their stories out there. They want their stories told not because they want attention or credit, but because their story might help someone in a similar situation. And I love that most people are like this. When it is possible, they want to use their own struggles to make life a little easier for someone else, even if they’ve never met that someone.

I had a “first” of sorts this week. I was out running errands wearing bleach-stained sweats and a baseball hat. It was one of those days when you hope you don’t see anyone you know, but I did. I happened to run into an acquaintance, Shirley, who reads my blog, and she told me a story.

After she finished the story and was walking away, she said, “If you think this story could help someone else, please feel free to repeat.” I do think it could help someone else, so I will repeat.

Shirley’s mom has Alzheimer’s and lives in a nursing home. At this point, she rarely remembers family members, and Shirley has started calling her by her first name because “Mom” doesn’t make sense to someone who doesn’t remember she has kids.

A while back, Shirley and a family friend were visiting the nursing home. They had brought in some Blizzards from Dairy Queen and were helping Shirley eat hers.

With a mouthful of Oreo Blizzard, Shirley’s mom said to Shirley, “Honey, you make good food. Is there a comment box here? I want to write a comment about how nice you are. Maybe you’ll get a raise.”

As Shirley told me this story, tears welled up in her eyes. She explained that as a kid she had always sought her mom’s approval but never felt like her mom was able to express admiration or pride. She never felt quite good enough for her mom. Despite her mom identifying her as a nursing home staff member, Shirley had this overwhelming feeling of satisfaction that she had done something that met her mom’s approval.

As they left the nursing home, the family friend said to Shirley, “It’s so hard for me to watch how your mom doesn’t even recognize you. I feel so bad for you.”

I talked with Shirley about how two people can perceive the same situation very differently. Although the friend saw this interaction as sad, Shirley left the nursing home with a sense of peace and contentment she hadn’t felt in a long time. What her mom had said was so meaningful that it took her breath away. And her friend simply saw a woman with dementia who no longer recognized her own daughter.

Dementia is not a “look on the bright side” type of thing. It’s a fatal disease that leads to emotional and physical pain. It gradually robs us of our friends and family members. We can’t prevent it, and we can’t slow its progress. I would never tell a family or individual to see the glass as half full after there is a diagnosis of Alzheimer’s or a related dementia.

And, yet, sometimes there are these poignant moments, and you have a choice about how you interpret them. When you are able to find a positive way to interpret an interaction with someone who has dementia (when you could interpret it negatively), you win. It’s absolutely a victory.

Sometimes you don’t get a lot of victories with dementia. So you gotta grab them when you can.

In that moment, it was Shirley 1, Alzheimer’s 0. Maybe the score would be different the next day, or even in 10 minutes. But you only focus on the game you’re playing right now.

Thank you for sharing that story with me, Shirley. I rarely cry, but you almost made me tear up in the snack aisle at Walgreens.

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