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• 📕 Book Recommendation: Dementia: Where Have You Taken My Grandpa 📘 |
The Dementia Newsletter, by elumenEd
Book Recommendation: Get this Newsletter Reader’s Book on Dementia!
This week I’ve got some really exciting news to share! I just finished a book written by Dementia Newsletter subscriber Elli Mary Catherine LeClaire, RN. The book is titled, Dementia: Where Have Your Taken My Grandpa?
From the Amazon description:
Lettie loves her Grandpa Martin more than anything. They share ice cream, laughter, and countless memories that fill her heart with joy. But when Grandpa starts forgetting things—like where he lives or how to find the kitchen—Lettie knows something isn't right.
Through love, patience, and faith, Lettie learns what dementia is and how to care for someone who's slowly forgetting the world around them. Even as memories fade, one thing never disappears—the love between a grandparent and grandchild.
Tender, honest, and filled with hope, Dementia: Where Have You Taken My Grandpa? gently helps children understand memory loss while celebrating the unbreakable power of family love.
This is a powerful book that is written primarily to help children understand Alzheimer’s disease as it affects someone they love. That said, I took a great deal away from it myself. There are lots of lessons in there that I had to learn the hard way along my mom’s journey with dementia.
So often, I feel like we leave children out of the conversations about dementia. When my grandmother was diagnosed with Alzheimer’s disease, I was about 16 years old. I didn’t understand what was happening, and no one talked about it. Instead, it was held as a family secret that was avoided at all costs, a kind of collective source of shame on her behalf.
“The Secret Sits”
We dance round in a ring and suppose,
But the Secret sits in the middle and knows.
The “secret” made me afraid. I didn’t know how to talk to my grandmother, and I didn’t know what might happen if I visited. That fear robbed me of precious time with her that I wish desperately that I could have back knowing what I know now.
This book gives the gift of understanding and communication. It provides information needed by grown-ups and children alike, and provides a perfect entry point for having a discussion with children about this difficult topic. Highly recommended!
You can find it on Amazon here: ➡ Dementia: Where Have Your Taken My Grandpa? by Elli Mary Catherine LeClair, RN
Thank you for this vital contribution to the conversation, Elli, and for being a Dementia Newsletter reader.
My autographed copy!
Your Body Is in Danger, Caregiver
Caregivers’ bodies are at risk, a lot of risk. In my 25 years in healthcare, I may not have seen it all but I’ve seen an awful lot. Horrible back injuries, torn biceps, ripped deltoids, and all kinds of other injuries that come from helping people move.
When a caregiver is injured on the job, that costs the company an average of $20,000. When you’re injured as a family caregiver, there’s no company or worker’s compensation insurance to help pay for medical bills and time away from work.
I created my program, Eastern Ergonomics, to help professional caregivers avoid injuries while transferring people, something home and family caregivers do every day and often without training. Even for the pros, this is the most dangerous thing they do. If you’ve got no training and no backup, the prospect of an injury is very real.
I’m offering a live online course specifically for home and family caregivers this Saturday, April 25th. It’s going to be from 10am - noon, Pacific time. You can get more information here: http://unbreakyourback.com/
For readers of the dementia newsletter, I’m offering a special 50% discount. Normally $49, I’m offering it to readers of this newsletter for $25 when you use the code NEWSLETTER50 at checkout.
(BTW, when I go into a healthcare company to teach this class, my pricing starts at $500. This is professional-grade training, revised for families, and offered at a killer discount.)
This course is based on 25 years of teaching caregivers and nurses better, safer ways to use their bodies in healthcare. Class is limited to 25 people, and I’m honestly not sure when or if I’ll get back to offering this class. It may be a one-time-only event. Take this opportunity to get the best transfer training available today, and keep your caregiving strong for years to come.
You only have a few days left to register. If you have questions about the class, you can reply to this email. Hope to see you there!
Caregiver's Corner: Mind, Self, and Attention
This week I want to bring together two threads that have been on my mind — one from a book I've been reading, the other from a pair of recent studies. They aren't obviously connected, but they both circle a question caregivers live with every day: what does it mean to be truly present with another person?
Part One: Is Your Loved One Still "In There"?
Few questions haunt dementia caregivers more than this one. A daughter sits across from her mother, who no longer says her name, and wonders whether the person she grew up with is still somewhere inside. A husband watches his wife stare at an everyday object she can't quite identify and asks himself if she is still herself.
This past week, I've been reading Michael Pollan's new book, A World Appears: A Journey Into Consciousness. Pollan — best known for his award-winning writing on food and, more recently, psychedelics — has turned his attention to what he calls "the unmapped continent" of consciousness, pulling together scientific, philosophical, spiritual, and literary perspectives on what it means to have an inner life. In an interview on NPR's Fresh Air, he told Terry Gross that "consciousness has kind of become the secular substitute for the soul."
That line is worth sitting with if you are caring for someone with dementia. Because the assumption buried inside a lot of well-meaning comments from friends and relatives — "She's not really there anymore," "He's already gone" — is that consciousness, personhood, the soul, is essentially a matter of memory and language and intellect.
Pollan's book pushes back on that view, not by denying the reality of cognitive change, but by asking us to look harder at what consciousness actually is. Much of his argument, as he described it on Fresh Air, runs against the Silicon Valley notion that the brain is a "meat-based computer" and consciousness is simply the software running on it.
In that framing, if the hardware degrades, the person degrades in lockstep. Pollan doesn't buy it. He argues that consciousness is inseparable from having a body — a body that feels, that is vulnerable, that is embedded in a world of smells and textures and other people. That's why, he believes, AI can imitate thought but will never be conscious: a chatbot has no skin to be touched, no stomach to be hungry, no heart to break .
What this means at the bedside
If consciousness is embodied — if it lives not just in the neocortex but in the whole feeling creature — then the person you love has not disappeared because they can no longer name the grandchildren. They are still the one who softens at a hand on their shoulder, who brightens at the smell of coffee, who settles when a particular song plays. That is consciousness, too. It's often the layer of consciousness that outlasts language in dementia.
This is more than sentiment. It has real implications for how you spend your time:
Speak to the person, not the diagnosis. Even when you aren't sure how much is landing, the tone of your voice, the warmth in your face, and the pace at which you move through a room are received and felt.
Trust nonverbal communication. A slow approach, eye contact at their level, a hand placed gently before it's used — these are not "tricks" for managing someone. They are how you meet a fellow conscious being who is now living more in the body than in words.
Resist the "already gone" story. Whether it comes from a neighbor or, on a hard day, from your own tired mind, it isn't the whole truth. The self you love is reorganizing, not erasing.
Pollan also raises a warning I think caregivers should hear clearly: there is a growing push to offer AI "companions" to lonely and cognitively impaired elders. These tools have some usefulness for prompts and reminders. But a chatbot cannot sit with your mother at 3 a.m. when she is afraid. It cannot be a warm body in the room. Whatever technology offers, the irreplaceable medicine is still a present human being. That's you.
If Pollan's book interests you, it's worth a look — it isn't about dementia, but it is, quietly, one of the more hopeful things I've read in a while for people doing this work. It’s also a fascinating and accessible survey of the emerging science of consciousness.
Help Keep the Caregiver Stories Coming
If this newsletter has helped you, would you consider supporting it?
Every week, I pour my heart into these words to make your caregiving journey a little lighter and less lonely. Many of you have shared how these stories have brought comfort, perspective, or even a smile on a hard day.
If you’ve ever found a moment of relief or recognition here, I hope you’ll consider tipping—$5, $10, or whatever feels right to you. Your support helps me keep writing, and reminds me how much this work matters.
Thank you for being part of this community.
Ben Couch, author
I’ve been a dementia professional for over 20 years, but the fight against this disease has become much more personal for me as I am engaged in my mother’s journey with Alzheimer’s disease. I started The Dementia Newsletter as well as it’s parent company, elumenEd, to help caregivers — specifically home and family caregivers — gain access to the very best training and information available at an affordable price.
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At The Dementia Newsletter, we’re dementia professionals but we’re not medical doctors or lawyers. The information provided is for general informational purposes only and should not be considered as medical or legal advice. Always consult with a qualified healthcare professional for medical diagnosis, treatment, or any health-related concerns and consult with a lawyer regarding any legal matters.
