When to Shut Your Mouth While Visiting Dementialand

A student in one of my college classes, Amy, had recently lost her mother. She was, as one might expect, struggling to cope. She decided to attend a grief support group at the hospice agency which provided care to her mom. There were plenty of other women there who had recently lost their mothers. Instead of feeling supported, she felt something quite different…jealousy.

Amy was 20, and her mother had passed away in her early 40’s. The other women in the group were in their 40’s, 50’s, and even 60’s. Although they were certainly grieving, Amy saw their grief somewhat differently than her own. Their mothers were around to see their daughters become wives and mothers. Her mother wouldn’t be. I started to tear up when Amy point out that her mom wasn’t even on earth long enough to see her become a legal drinker.

When Amy spoke at the meeting, the other women nodded as if they knew exactly what she was talking about. They made comments that implied they knew just what she was going through. They were trying to be supportive. They were trying to make her feel like she wasn’t alone. Really, they just pissed her off. After two meetings, she decided that the support group was making her feel worse and sought counseling instead.

I can’t blame her. There are few things worse than when people act like they know exactly what you’re going through…when they don’t. Sometimes I mention my experiences with clinical depression, and a well-meaning person says something like, “Oh, I know what you mean. I was really down for a few weeks after my boyfriend dumped me.” That’s not depression, and I want to tell them that they really don’t know what I mean. I have an acquaintance who has been diagnosed with chronic fatigue syndrome. People are always saying to her, “I’ve been REALLY tired lately myself. I hear you.” She once joked to me that she’d like to kick them–if only she had the energy.

I understand why people act like they can relate when they can’t. Typically, it’s because they are trying to find common ground in an effort to be supportive. I can think of some instances when I’ve done this to my friends. For instance, I was out to lunch a few years ago with a friend who had recently undergone a kidney transplant. I launched into a monologue about my own experiences with kidney stones. I was trying to relate to him and show that I knew that kidney stuff could be painful, but I was really just being an idiot. He had experienced a life-threatening kidney condition and been through a risky surgery. He’d also been through an intense emotional journey of searching for and locating a kidney donor. And I had kidney stones. I should have just shut up and listened. Not exactly a shining moment for me as a friend.

We do this with dementia. I spoke recently with a woman in her 60’s, Joan, who has been diagnosed with Alzheimer’s. She told me that she was visiting with friends at a coffee shop and updating them on her life. She mentioned a few instances when her short-term memory failed her and described how terrifying it was.

Her friends, none of whom had dementia, launched into a discussion of their own memory issues. One woman talked about how she kept forgetting to get gas in her car, and she coasted into the gas station just in time. Another women talked about how she forgot her granddaughter’s birthday and the little girl got her gift a day late. A third friend told a long story about how she was making a big dinner for her extended family and had to make three trips to the grocery store in one day because she kept forgetting stuff. Then the three women laughed about the challenges of growing older.

I’d say Joan was annoyed, but that’d be an understatement. She vowed she’d never confide anything related to her dementia to these friends again. In her friends’ defense, I believe they were trying to make her feel better. They were trying to show her that we all have memory issues, and they wanted Joan to know that they related to her struggles on some level. However, it was all wrong. All wrong. 

She felt like they were minimizing her issues. She even felt like they were denying that she had a disease. They implied that they felt her memory challenges were just like their memory challenges, and Joan was (rightfully) offended. They had minor memory lapses that might be related to aging or just being busy. She had Alzheimer’s.

“They act like they know what I’m going through,” Joan said. “Maybe I’m a horrible person, but I had the urge to reach across the table and slap them.”

Nope, Joan. You are not a horrible person. Your friends need a lesson on empathy. And if that doesn’t work, maybe the slap isn’t a terrible idea.

So, if you are around someone with dementia, remember this:

You have no idea what it’s like. I advocate for people with dementia. I do education on dementia. I spend time with people on dementia. I’ve done about 30 different dementia simulations. I STILL have no idea what it’s like. You may be a family caregiver who spends 24/7 with someone who has dementia. You do not get what it’s like to have dementia. Maybe you have worked in a nursing home for decades. You still don’t get it.

We tend to think we have to understand, or at least pretend to understand, what someone is going through in order to be supportive. Sometimes, however, it’s the opposite. Sometimes the first step in being supportive is acknowledging that we don’t fully understand what someone may be going through. They are having a unique experience. They are on a journey that only they understand completely. In order to get a glimpse into what they may be navigating, we need to shut our mouths and listen.

Why is that so hard to do?

3 thoughts on “When to Shut Your Mouth While Visiting Dementialand

  1. Thanks for your article. My 82 year old mom has dementia and my 61 year old sister in law. I help take care of both. It’s hard to explain to people that these women can’t help the way their brain works. Sometimes, even when what they are saying is incorrect, you just have to nod your head and agree with them!! It’s sad for the person but really sad for their loved ones to watch. The people with dementia, don’t really realize how bad things are. The family members have to watch their loved ones slowly disappear from who they used to be..,…, One day hopefully, there will be a cure.


  2. Thank you SOOO much for a profound entry. Great examples, and I think this will be super useful to all of us in empathizing with others. What a valuable thing your blog is for us!


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