alzheimer's, caregiver, caregiving, death, dementia, dementialand, dying

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.

26 thoughts on “The Critical Emails I Get in Dementialand (and How I Came to Be Okay With Them)”

  1. People are very quick to cast judgment in the blogosphere I have found and yes–tough skin is needed. I have blogged for over 11 years and have had very few negative comments (aren’t I the lucky one?) but I think it is because I have an audience of really wonderful readers who echo my positivity in life. I have written quite a few posts about my mom’s dementia and my experiences dealing with it as a daughter and have only gotten positive comments –not sure why but I think it is because I write from my heart and experience and it must somehow resonate. Or has not reached the masses who are critical which is probably more likely. It is not a pretty disease. It is not simple and it is not the same for everyone. Keep on writing and sharing your thoughts. It will make a difference to one person I am sure and that is all that matters. Thank you!

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  2. I’m guilty of only commenting when you hit the nail on the head with something brilliant. I’m also guilty of not reading your blog for weeks at a time. But I’m not guilty of trashing your blog.

    As a retired (to early dementia) preacher, I know what it is to come up with a new message every week. It’s a good exercise, but it produces a wide range of efforts. Strangely enough, some of the seemingly lesser products sometime elicit the best responses — and vice versa. It comes with the territory.

    My favorite sentence: “Sorry not sorry.”

    Keep up the good work!

    ~ from a fellow word-crafter

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  3. I so appreciate your blog! It’s a great of source of encouragement, awareness, and insight for any individual or family coping with dementia, all with the perfect dose of humor. I especially appreciate that you don’t avoid or leave out the “hard stuff” just to appease those who struggle with reality. Like others have said before me, “Keep up the good work!”

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  4. Elaine, although I have not experienced either dementia or Alzheimer’s in my family, you blog provides good insight. Keep in coming, I love learning from you.

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  5. Brilliant response to what has to be the hardest thing about a public blog. As a careful reader, with a beloved sister-in-law suffering midstag AD, a sister caregiving, and living with a terminal illness myself, I have found your writing to be realistic, uplifting and encouraging. You are so right in clarifying the wholeness of life, that its this organic mass of experience that teems with all that life has to offer. Your example of acceptance is wonderful, as acceptance is such a useful skill.
    I am drawn in by very few blogs I encounter, and found yours really hits the mark for me. I hope you write for many years to come! With much warmth, Mame

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  6. Oh, Elaine. You just wrote your best post yet! (And I am not your husband or your parent :-))

    Thanks for providing such insightful information for those of us struggling with loved ones with dementia. I have learned a lot from you, including from this post!

    It helps me to remember the good, the living, the today, of living with dementia.

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  7. Hi, I have enjoyed your blogs for several months now and them insightful. I do not have Alzheimer’s, Dementia, etc. nor do I know anyone who does/did but I do have a left frontal lobe brain injury. I have a lot of the problems you describe (not knowing who people are that I should, forgetting the day, month or where I am, etc.) but mine is not fatal. Your blogs remind me of this and helps me to accept my limitations with the knowledge, yes I have losses, but they will not kill me. I hope that makes sense because most times it sounds good in my head but doesn’t come out the way I want. Thanks Janet

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  8. When I discovered your blog I think I DID go back and read as many as I could! I so appreciate your attitude and insights. I like your sense of humor because it gives me permission to use my humor. I can make my FTD husband smile, the caregivers smile and me smile. Doing pretty ridiculous things. If I can get my husband to sit on a wedge cushion with a pommel by asking him to saddle up cowboy and wear his Stetson, then yay!
    If someone does not like your blog, then for heavens sake they don’t have to read it.

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  9. I always feel that negative comments on my blog are only a reflection of some inner turmoil or anger within the commenter. Dementialand focuses on something none of us want to think about whether we have it or know someone in the grips or just the fear that we will “get it”. I know you don’t need to hear this from me because you seem to have a very big handle on people….but don’t take it personal…there are some of us out here that you don’t know who grab pieces of what you say to guide us in all of our other little problems. Keep them coming!

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  10. HI Elaine.
    I am a friend of your Mother’s. She told me about your blog and I started reading it. I am now a subscriber. I love it!! All those things you said in the last post are true but I find your work more insightful than not.
    I am a 66 year old woman who has a brother who is 55. He is so very important to me he has been like a father for most of my life if though my father was alive and very much my father. But I was the last of 7 children and my father died when I was 28 and my brother took on that role.
    He is now showing signs of dementia. This breaks my heart. He is so intelligent and I hate the fact that he is experiencing this.
    My point is, part of m e thinks it would be better for him if he passed away and the other part of me wants him to live. I hate for him to end his life not knowing who I am.. And my 8 year old granddaughter is so attached to him and he to her. I talk to my granddaughter about how her Uncle Bill doesn’t always remember things. She says she is ok with that. But her face lights up when he calls her “Puddin’. I hate the thought of him not remembering her.
    All of this said, I understand how people see both negativity and positive to your blog but it is all true. So many things contribute to our feelings everyday So don’t let those “mean girls” get to you. I love your blog. and have forwarded the information to all my family.
    Keep up the good and insightful work. I appreciate it/

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    1. Thanks for your comments! I’m sorry your brother is going through this. I know it’s difficult for him, and I’m sure difficult for the whole family. We must find a cure for families don’t have to go through this.

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  12. I could not agree more! I am not related to you, and though I would love to be your friend, I have never met you, so here’s my unbiased opinion: you write a terrific blog about a difficult subject. Carry on.

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  13. I always enjoy your blogs. Yes, some blogs fit my personal situation better than others, but they are all thought provoking. Thank you for taking the time to write them.

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  14. Really good, thoughtful post. It’s good that you have developed a healthy coping strategy for comments. I am always amazed at what people feel they want to share. I have visited Alzheimer’s and dementia with an aunt and mother who were afflicted. Giant positives and negatives.

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  15. I love reading your blog. My Mum has Lewy Body dementia and we do have good days and bad days but she is overall fairly happy and lives in a world full of interesting people – many from her past who she chats away with most of the day. We have to look at her life positively and smile and laugh with her during our visits. Of course there are many negatives about her life but at least we know she is never lonely and spends most of her day with her mother and husband ( both long departed).

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