The Critical Emails I Get in Dementialand (and How I Came to Be Okay With Them)

When I first started writing this blog about 16 months ago, the only feedback I received was positive. Overwhelmingly and sometimes ridiculously positive. I repeatedly heard that it was smart, insightful, funny, and poignant. At that point, my readership included only my mother, my husband, and about four friends. None of them had a negative word to say unless it was to point out a typo.

My readership has expanded. I have “subscribers.” Sometimes I see that my blog gets shared on Facebook by people I don’t know. Of course, most people who write a blog hope that more than six people read it, so this is a good thing. However, it’s forced me to realize that not everyone always finds my blog smart, insightful, funny, and poignant.

At first, I wasn’t okay with this. People’s criticisms (especially when they are mean rather than constructive) cut me hard. I lost sleep. I was in a foul mood. I spent hours crafting email rebuttals to the emails I received. If you’re wondering what types of critical emails I received, here’s a brief summary (paraphrased) of some readers’ thoughts….

You don’t know anything about dementia unless you care for someone with dementia 24/7. You can’t learn about Alzheimer’s by getting a PhD. You probably have never even provided care for someone with dementia. You act like everyone with dementia is the same when they’re not. You don’t know the difference between the terms Alzheimer’s and dementia (this person was kind enough to send me a Wikipedia link to clarify–ummm–thanks?). You need to write from a Christian perspective. There are diets that cure Alzheimer’s, and you should be writing about that.

I once had a guy email me and insist that the Alzheimer’s Association already had a cure for Alzheimer’s but didn’t want to reveal this because they’d all lose their jobs. He seemed to think I was in on this conspiracy. I was a bit flattered that he’d think I, of all people, would be in on this conspiracy.

There’s a reason I only look in my spam folder about once an month, and it’s not those Nigerian princes whose whole families have died in tragic bus accidents.

Comments like this used to sting, even if they were off-the-wall and ridiculous. I’ve gotten in a few passive-aggressive email and Facebook arguments in an effort to defend myself. In fact, it’s hard for me to revisit these criticisms here without writing a rebuttal to each, but I’m not going to give in to that urge. That’s not what this post is about. (And I must admit writing this blog has really helped me develop thicker skin. Furthermore, I’ve realized that people’s comments are more a reflection of where they are in their journeys with dementia than my work, and I’m not saying that some people have not had valid points.)

This post is actually about the two most common criticisms I get about my blog. And that’s where I will squeeze in that rebuttal.

One of these criticisms, which commonly comes from caregivers, is that I portray dementia in too positive of a light…that I look at this through rose-colored glasses…that I find positivity and humor where there is none. The other criticism, ironically, is that I portray dementia too negatively…that I focus too much on the end and not enough on the years that people with dementia can live purposeful and fulfilling lives.

My hope is that someone who reads my blog regularly (although I don’t expect anyone except my mother and husband has read all 101 posts) would not make either of these claims, but I can understand these criticisms coming from someone who has read a few posts here and there. Sometimes I am more negative, and sometimes I am more positive. That’s a reflection of my recent experiences with dementia and likely a reflection of my mood and other events in my life as well. I have my own ups and downs. Sorry not sorry.

When I started this blog, I didn’t have a master plan. You give me too much credit if you think I set out to portray dementia negatively or positively. There was certainly never an agenda. I set out to share my own insights and experiences. I just desperately hoped I could find something to write about each week and not make a fool of myself. In time, that hope turned into fear that at some point I would not be able to find a way to work “Dementialand” into each and every blog post title. I had a dream one night that I wrote an absolutely brilliant post but never published it because there was no way to incorporate “Dementialand” in the title. I woke up in a cold sweat.

This blog is where I’m at on a particular day. And, although I had no intention of portraying dementia positively or negatively, I’m somewhat glad that I can fall on both ends of the spectrum. In a way, I’m proud that I get criticized for being both overly positive and overly negative.

There’s a risk in shedding a positive light on dementia. The general public doesn’t understand what Alzheimer’s and related dementias do to people. People still think this is just about forgetfulness–telling the same annoying stories repeatedly–having to be reminded to brush your teeth–calling your grandkids by the wrong names. As a society, we need to understand it’s much more. We need to understand that dementia kills people…and not just old people. The risk in minimizing the seriousness of diseases that cause dementia is that this hurts the efforts of those who fundraise to increase support and research.

However, there are people out there diagnosed with Alzheimer’s, Lewy-Body Dementia, Frontotemporal Dementia, and vascular dementia living quite well. There is something between diagnosis and death. It’s called life. Someone with early-onset Alzheimer’s recently told me that she’s dying from Alzheimer’s and living with Alzheimer’s all at once, but she’s thinking about the living part. She estimates she has one or two “good” years left. She refuses to waste them. As I write this, she’s in Hawaii with her family. She knows it’s probably one of her last vacations, but she’s there now.

Dementia is about death and dying. Alzheimer’s, Lewy-Body Dementia, Frontotemporal Dementia…all terminal diseases. Dementia kills people, and I can’t apologize for being blunt on that. I give several community presentations on dementia each month, and people are still not getting this. They act offended when I mention that dementia is fatal.

And yet many of my friends with dementia have good lives. They smile. They laugh. They love. They spend time doing things that are meaningful to them. Some people with dementia are happier than some people without dementia. Some people with dementia are happier than…me. I can use the terms hope and dementia in the same sentence.

None of that changes the reality of the struggles and challenges of dementia. None of that changes the need for more funding and research. None of that changes the fact that no one should have to forget their loved ones. And none of that changes the devastation of these diseases.

So before you send me an email about how my blog is too positive or too negative…a couple things. First of all, make sure you’ve read more than one post. And second, know that I’m not trying to convince you of anything. I’m not trying to tell you that dementia is no big deal. I’m not trying to tell you that dementia steals every joy in life upon diagnosis. Neither is true.

Life ain’t a fairytale–whether or not you have dementia. Stuff goes all wrong, but you have to find a way to survive and (when you are able) thrive. It’s not that life is good and then bad and then good again. Life can be good and bad..and funny and sad and poignant and a million other things…all at once.