Friends Who Make Like Trees in Dementialand

In one of my college courses, I often found myself sitting directly behind an African-American woman who wore her hair in cornrows. I was fascinated by her cornrows and found them gorgeous. As a white girl who couldn’t even braid, I was amazed at how tiny and detailed the braids were, and one day I decided to tell her that.

I started with something like this: “I hope this doesn’t seem weird, but I have been sitting behind you for this whole semester and I just have to tell you how much I like your hair.”

She thanked me, and we talked about how long it took to do the braids. I’m not sure I’d say we were friends after this conversation, but we were at least “friendly.”

I didn’t think too much of our interaction until a few months later when I attended a panel discussion on campus. The panel discussion was on ethnic diversity. I remember sitting in the front row and looking at a long table of experts on ethnicity, discrimination, and social relationships.

The people on the panel talked extensively about things you should not say to individuals who are ethnic minorities. In the midst of this discussion, an African-American woman said that you should never ever–under any circumstances–say anything about a black woman’s hair (which, of course, I had recently done).

I also remember someone saying that you should never ask a question based on a racial stereotype. They gave two examples, which I clearly remember. First, you should not ask an Asian person if they play the piano. Second, you should not ask an African-American man if he plays sports. In addition to breaking the “rule” about talking about a black woman’s hair, I had also recently asked if an African-American man if he played basketball. To be fair, he was a college student who was about 6 foot 8 and was wearing basketball shorts around campus–but I had broken that “rule” as well. (And, yes, he was a college basketball player.)

I am sure that there were many useful points made at the panel discussion on diversity, but my 19-year-old brain wasn’t able to process all of them. Instead, I was stuck on how some things I had said could have been perceived as offensive. And it bothered me. A lot. I even asked my roommate, Erin, if she thought I was racist. (If I never thanked you at the time, Erin, I’d like to thank you now–more than a decade and a half later–for assuring me I was not a racist.)

I left the panel discussion afraid to talk to people who were different from me. I worried that I would say the wrong thing, even if I was well-meaning. Obviously, that wasn’t the purpose of the panel discussion, but it was the impact it had on me at that point in time. I thought maybe it was better to not interact with someone than to say the wrong thing to them.

In a way, I had felt like that before in a very different situation. I had a friend in middle school whose mother passed away from cancer. I didn’t know what to say to her, so I avoided her. I didn’t go to her mom’s funeral. I saw her in the hallways at school and walked the other way. I saw her as different than me…I had a mom and now she didn’t. I had no idea how to relate to her. I didn’t want to make the situation worse.

We don’t know what to say to people who are different from us in some way, so we don’t say anything at all. We think it’s better to say nothing than to say the wrong thing. We feel more comfortable abandoning people than risking a situation where we might flounder or say something stupid.

I lost one of the best friends I’ve ever had, Sandi, to cancer almost a year ago. I remember sitting at her kitchen table last summer as she told me that she would see people she knew in the grocery store and they’d escape to another aisle so they didn’t have to chat with her. It made me angry. Yet, I don’t want to think that all of those “avoiders” were terrible people. I think that many of them avoided her because of their own fears and insecurities. I have to wonder if they just didn’t know what to say–so they didn’t want to have to say anything. It still bothers me that people were uncomfortable seeing Sandi after her diagnosis, especially because she was the type of person who was really good at making everyone around her feel comfortable and at ease.

It bothers me that we run away from people who need support because we worry we are going to say the wrong thing or because of our own issues. When I talk to people who have been diagnosed with Alzheimer’s or a related dementia, they often tell me that friends just disappear. It makes me sad. However, I’m an optimist at heart, and I can’t think that all of these people who disappear are awful human beings. Most of the avoidance of those who have dementia is based on fear. Fear of awkwardness. Fear of not knowing what to say. Fear of doing the wrong thing. Fear of the same thing happening to us. Sometimes being there for someone takes us out of our comfort zone. We need to do it anyway.

And I can apply those same thoughts to situations where people have other serious illnesses, are caregivers, and have lost a loved one. (I notice when someone has lost a loved one support peaks at the time of death and the funeral….and then abruptly decreases as life returns to “normal” and there is no socially mandated way to support someone.) We feel inadequate to help people, so we don’t even try.

On a personal note, I have a family member with a serious mental illness. At times, I’ve felt avoided by people I thought were friends. Looking back, I’m sure they were uncomfortable and didn’t know how to support me, so they just thought it was better to make themselves scarce. The people who reached out to me when things were rough weren’t always the people I expected, but I will never forget who they were. They didn’t know the perfect thing to say or do, but they reached out anyway.

It is not okay to avoid people who are struggling because we are afraid. Sometimes it’s gonna be awkward. Sometimes we won’t know what to say. Sometimes we will say something that doesn’t come out right. And sometimes we will have a major foot-in-the-mouth situation. (I’ve had many….) But it’s okay.

I’ve seen some articles online with titles like “10 Things Not to Say to Someone with Cancer” or “What You Should Never Say to Someone with Alzheimer’s.” I appreciate the notion, but I also wonder if articles like this increase our anxiety about interacting with someone who has a serious illness. Instead of focusing on making a positive difference (what we should say and do), we become more censored, more hesitant–because we don’t want to say the wrong thing. Sometimes I feel like telling us what not to say to someone makes us feel like the distance between us and them is much larger than it really is.

Here are my rules for supporting someone with dementia and their family (and you can apply these rules to others who might be struggling as well):

1. You will say the wrong thing. Just accept that at some point you will say something stupid.

2. There is no right thing to say anyway. No matter what you say, the person will still have dementia. What you say or do can’t fix that. (You aren’t that powerful.)

3. After you’ve accepted that you will say the wrong thing and you can’t cure illnesses, keep showing up–literally and figuratively.

Last week, I had breakfast with a woman whose husband has Alzheimer’s. She told me that she really only had one friend these days. All of her other friends had (as she said) “made like trees and left.” However, she managed to not be bitter. She explained that she knew it was hard for them to spend time with her and her husband. She realizes she and her husband are a scary reminder of what could be in her friends’ futures.

“They don’t know how to act,” she told me. “The life I’m living right now is terrifying to them. I get it and I’m okay with it.”

Maybe she was okay with it, but her justification of their absence made me feel like crying.

2 thoughts on “Friends Who Make Like Trees in Dementialand

  1. Funny. After a while in dementia land, you find new friends who live there too. Many of my most valued relationships have been established online with others who have become isolated as well. Now that my journey with my mom is almost over I’m not sure where I belong.
    I do enjoy reading your thoughts as we are kindred spirits.


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