What I Don’t Get About Dementialand (And Hopefully Never Will)

You can only know so much about Africa without visiting. You can read books on Africa. You can look at pictures of Africa. You can spend time with people from Africa…but I don’t think you can really gain a full understanding of Africa without visiting.

That’s where I’m at with Dementialand. I know a lot about dementia. I’m grateful that I am sometimes given opportunities to use this knowledge to educate communities, professional caregivers, family caregivers, and college students about dementia. Sometimes, however, I am put in my place. I’ve never been to Dementialand, and every once in a while someone reminds me of this.

I was talking with a woman with dementia a few months ago when she got hung up on a word. I waited patiently while she tried to pluck it out of the air. She never found the word, and her gaze settled on me.

“You look at me all smiley when I get frustrated with myself,” she said angrily. “You don’t know what this is like. Stop acting like you get it.”

Fair point.

I don’t know what it’s like to have dementia.

If you have dementia, please realize I understand that my education and experience can only take me so far. I don’t understand how you feel. I try to understand, but I can’t fully get there–because I don’t have dementia. Please also realize that I’m trying my best with the skills and knowledge that I have. I’m gonna screw up. I’m gonna say the wrong thing. I’m gonna frustrate you because I don’t know how to help you. (And, to be honest, you’re probably gonna frustrate me, too. That’s what dementia does.)

But I promise that I won’t stop listening and learning. Toward that end, I make an effort to read books, poems, and blogs written by people with dementia.

I’ve mentioned Melanie Wagner in my blog before. She has early-onset Alzheimer’s and continues to write about her experiences at https://mwagner21.wordpress.com/. She’s amazing to share her journey, and yet I don’t think she has any idea that she is remarkable. Her blog will teach you more about Alzheimer’s than my blog ever could.

I spend hours reading, talking, teaching, and thinking about dementia. I spent the last four nights at a hotel where I was annoyed by the carpet design because it would not be appropriate for someone with dementia. It’s impossible for me to go to a basketball game or a bar without thinking about how overwhelming the environment would be for someone who was affected by Alzheimer’s. Despite my passion and knowledge, I could never write anything as insightful as Melanie’s work. She understands dementia in a way that I don’t, and–if I’m being honest–I hope I never do.

Today I am sharing one of her poems.


Hear the words
Listen to the quiet undertones
The crumbs, the soft whispers

The off the cuff remarks

Please don’t judge, accuse, negative or condescending


Each word, the context, the emotion

They mean something

Follow the crumbs

Pick them up

Don’t wait to get to the end

When it’s too late

Don’t be the one who says, thinks, or wonders – the what ifs, I should have seen, known or done something, helped!

Hear my voice, my pain, my heartache

Follow my path, catch me, hold me, help me


Read between the lines

Look for the signs, the cliff

Along the trail are clues

Reactions, implosions, doubt

Loss of self worth, meaning, purpose

No one knows how many crumbs will fall

When they run out

When they stop



Learn and understand

Empathy not sympathy

The bricks have all ready fallen

The crumbs are being placed

Time does end

Light does fade

Tomorrow is never promised
~ Written by Melanie Wagner ~

Original source: https://mwagner21.wordpress.com/2016/01/21/bread-crumbs/

3 thoughts on “What I Don’t Get About Dementialand (And Hopefully Never Will)

  1. Thank you Elaine. I know it’s only a couple words, but there is a lot of meaning behind them. No, you may not have this, and I pray you never do, but… And a big but, what you are doing – your work, blog, friendships, etc, are impacting and helping so many people, including those with this disease. Which means you’re helping me too! I honestly cannot wait till I receive your next one in my email. It takes me longer to process it, to “get it”, but I do and it helps. You see, you have insight & experiences from your side of this and the insight and experiences from the other side of it. You interact and maybe some people don’t know this, but every single person with dementia deals with it differently, they progress differently and the emotional and physical sides of it effect each of us differently. So the more that know, to relate, to write, to talk and to advocate is so very important. I feel that’s just some of the amazing thing you do.
    Thank you for sharing my blog and my poem. It’s not a “pat on my back” .. It’s a tool. A very big tool – to make change, raise awareness and find a cure. I know I do not want one more person to suffer from this horrible disease. It’s torn me apart in every way possible, along with my family. I wish I had the means to convey so much more … Praying God will give me the opportunity and the words. No, I still don’t believe I’m remarkable but I’m hoping my words can at least cause that ripple for change. Much respect and love. Wish we lived closer. As a smile/humor I always try to add to anything- you are on my bucket list too, along with seeing a special place overseas where my dad was from, to skydiving!! 😉💙


  2. You may not have dementia and, like you, I hope you never will, but you have more insight, experience, and passion to relate to and educate others than any non-diagnosed person I know. You help express and convey thoughts I cannot put into words. You are very real and relatable; I’ve never met you but feel like you know me.

    I know it’s common to take a step back when a sharp comment or response is received, and I know you’re not looking for accolades or praise from what you share. I’m guessing you’ll pocket the info and move ahead accordingly. However, as someone who lives in dementialand, you may not live here but you have definitely been here! And I am so very thankful that you visit!

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