In the spring, I asked for my loyal readers to send me some questions in hopes of finally achieving my adolescent dream of being an advice columnist. I received more questions than I expected. From the bottom of the heart, thank you. You guys really are the best.
Sure, I answered some. Yet many of them I didn’t answer—not because they weren’t great questions. In fact, maybe they were too good. I was left shaking my head, thinking “Wow. That sucks. And I have nothing to offer you.”
Several readers emailed me about something that tends to happen when people “come out” with their dementia to family and friends. It’s an issue I’ve thought about a lot. I’ve wanted to offer advice to the individuals with dementia and their caregivers, but I didn’t know what to say. It finally occurred to me that I was focusing on the wrong group. I want to offer advice to everyone else on behalf of people with dementia and their caregivers.
So here are some things to not say to someone when they tell you they have dementia:
“Oh, I’m super forgetful, too.”
“I lost my keys the other day. Maybe I have dementia as well.”
“I’m right there with you. I didn’t remember pick up milk the other day after my husband reminded me three times.”
“I bet I’m just as bad. You wouldn’t believe the stupid stuff I do sometimes.”
To be honest, these types of comments make me pretty angry. My first thought is to be judgmental of those who make such comments, but after a bit of reflection I’ve realized that maybe these people aren’t insensitive jackasses. Maybe they are just uneducated. There’s not much I can do to prevent jackassery, but I can make an attempt to educate.
Dementia is a condition caused by a disease such as Alzheimer’s, frontotemporal dementia, Lewy-Body dementia, or vascular issues. It is a medical condition. It’s unfortunately irreversible and ultimately fatal. It’s a big deal.
Let me put this a different way. Let’s say a friend came to you and said they had stage IV lung cancer. What if you responded with one of the following statements?
“I’ve been coughing so much lately. I bet I have lung cancer, too.”
“I’m right there with ya, buddy. I get winded walking up the stairs.”
“I had trouble catching my breath the other day. I know exactly what you’re going through.”
Those comments are ridiculous, right? Well, that’s exactly what we do to people who have dementia. It would be hilarious if it weren’t so infuriating. Comments about how we are going through something similar (when we aren’t) might be well-meaning, but they minimize the severity of a dementia-causing disease. And they say, “I’m not really listening to what you’re telling me.”
If you are a person who has clinical depression or an anxiety disorder, you might have experienced similar comments. I remember when I was going through my first episode of depression in college. I slept about three hours a night for weeks and unintentionally dropped twenty pounds that I couldn’t spare at the time. I threw up when I tried to eat and lived with a feeling of panic that wrapped around me like a boa constrictor. I thought I was destined to live my entire life in this state (please note: I got better).
I am certain my friends knew something was quite wrong but we had avoided the word depression. After my first visit to the student health center, I decided it was time to let a friend in on what was going on. This wasn’t easy for me. Honestly, if I had realized I was a lesbian in college and had to divulge this to my conservative Republican father, I would have dreaded that conversation far less than “coming out” with my depression to a friend. That’s how difficult this was for me. (And I do understand the irony that I am now writing about having depression in a blog. I’m kinda over that whole stigma deal.)
I explained that the doctor told me I had clinical depression and that he recommended anti-depressants. Her response was, “I’ve been in a bad mood, too. You know I didn’t do well on that test Monday.” Um. She didn’t get it.
To be fair, she was 21 years old. I don’t want everything I said at 21 (or before or after for that matter) scrutinized. In fact, I still say a lot of stupid things that are intended to be helpful but miss the mark. To hold this comment against her almost twenty years later would be purposeless. In fact, my point is that she was doing the best that she could. She was well-meaning. If the roles were reversed, I don’t know if I would have done better.
There’s a rule we need to understand in helping those who have health issues, and unfortunately some of us never really get it. We continue to try to make people feel better by saying we know exactly what they’re going through because we’ve done it ourselves—or even that we’re doing it right now. We try to show comraderie. We try to tell people they’re not alone because our own struggles are similar.
It doesn’t work and we need to stop.
Telling someone who has Alzheimer’s that you sometimes lose your sunglasses isn’t helpful. What you are really telling them is “Alzheimer’s is no big deal. We all go through stuff like that.” And you know what? That’s not true at all. Alzheimer’s is not a normal part of aging. In fact, it’s a terminal disease that has tremendous psychological, social, and financial impacts on families. Oh, sorry about your sunglasses.
I’ve talked with many people who have dementia that struggle with how to tell family and friends about their diagnosis. It’s not an easy conversation to have. And, let’s face it, there’s no perfect response.
However, there are some suggested ways to respond when someone tells you they have a serious illness (whether that serious illness is ALS, cancer, or Alzheimer’s).
Remember that it might have been really difficult for them to tell you this news. It sounds silly, but saying “Thank you for letting me know this” can reinforce their decision to include you. You can say something like, “I’m so glad I know now so that I can there for you.”
Forget that anecdote about your Aunt Bertie who had the same disease (or maybe it wasn’t even exactly the same disease but it was kinda the same) and used castor oil or vitamin E or snail semen or maybe it was prayer to treat all her symptoms. Just zip it. This ain’t your Aunt Bertie, and this isn’t the time. Oh, and that study you read on Facebook about how they cure mice with Alzheimer’s by using green tea extract? Just keep it to yourself. (By the way, sometimes I wish I were a mouse. Doctors seem to be able to cure everything for them.)
It’s okay to say, “I don’t know what to say, but I care about you.”
It’s okay to say, “You are important to me, and I’m here for you.”
It’s okay to say, “I want to help and I’ll need some guidance on how to do that.”
It’s not okay to imply that you have similar cognitive issues to someone who has been diagnosed with Alzheimer’s, frontotemporal dementia, dementia with Lewy-Bodies, or another dementia any more than it’s okay to imply that you have similar breathing issues to someone with lung cancer.
If you are a person with dementia and experience this reaction when you tell others about your diagnosis, you have my permission to handle this situation in whatever way you see fit—but try your best to avoid slapping your friends and family.