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Unexpected Journey
Descent Into Dementialand is a raw, honest memoir about caregiving, memory loss, and a love that refuses to let go. You describe this as much a love story as a medical journey. How did your understanding of love change as Mike’s condition progressed?
Before Mike began to experience difficulties in communication that I would later learn were signs of progressive dementia, I viewed our love as a romantic, reciprocal partnership. As he gradually lost abilities, the reciprocal part never changed. I always knew and felt that he loved me dearly, and I continued to adore him. It was, of course, the partnership aspect that changed. Always so bright and capable and in control, he now needed me to navigate life and help him enjoy what remained of it. With his innate sunny disposition, he knew full well what awaited him, yet kept me laughing and loving him even more, as we navigated the coming storm together.
The book suggests that both the person with dementia and the caregiver are traveling through the same crisis, but in different ways. What do you wish more people understood about the caregiver’s emotional reality?
Of course, it is extremely gut-wrenching to watch someone with whom you have spent a lifetime gradually losing their identity and capabilities. I was constantly reminded by memories and photos that he was that same person, now struggling to hang on to the remnants of his past life. But for me, it was almost an honor to help him travel that last road. He had given me so much. At this point in time, we had become in many ways one person, fused together. I felt closer to him than I ever had.
You write openly about frustration, exhaustion, and even moments of irritation alongside love. Why was it important to include those less “idealized” emotions?
Because we are human, and those feelings are inescapable. Even though my logical brain told me that Mike was incapable of understanding what I was doing at some point or why I was doing it, that knowledge did not alleviate the frustration and anger I felt in the moment. I think many caregivers are too hard on themselves and feel guilty about normal reactions we all have. We would need to be robots not to feel these emotions.
What do you hope readers who have never experienced dementia take away from your story? For caregivers currently living this reality, what do you hope they feel when reading your book?
For readers who have never been touched by dementia, I hope that they come away with some knowledge about the condition. The odds are great that they will either develop dementia themselves or know someone who has. According to the Alzheimer’s Disease Association, someone in the world develops dementia every 3 seconds. There are over 55 million people worldwide now living with dementia. That number will almost double every 20 years, reaching 78 million in 2030 and 139 million in 2050. I also hope that it sparks conversations and awareness. I hope we can shine a light on this condition, often thought of as shameful or just a consequence of aging. I hope it increases charitable donations for finding a cure.
For caregivers who are currently living with this reality, I certainly hope that they, too, gain an understanding of what is happening, why it’s happening, and what to expect as dementia inevitably progresses. I hope that they realize that getting a diagnosis of the particular kind of dementia is critical, as it will open the door to resources for them and their loved one, and that knowing the progression of the particular dementia helps them prepare for what is to come. Most importantly, I hope that they learn to love themselves through this unexpected journey. Their feelings are normal and real, and they are not alone.
Author Links: GoodReads | Website | Amazon
“I love you as much as I ever did. It’s still me inside …”
For almost six decades, Sherry and her husband, Mike, have been by each other’s side. Through success and loss, hope and devastating trauma, they have shared a life of indomitable love and solidarity. Then, in 2018, that life was shattered when Mike was diagnosed with logopenic progressive aphasia, a rare and progressive form of dementia. But the signs had been present for some time. So began Mike’s journey into Dementialand—a terrifying place of no return. As always, Sherry was right by his side.
In this heartbreaking, yet love- and hope-filled memoir, part case study, Sherry candidly shares with the reader their lives both before and after the diagnosis. She theorizes about the root causes of Mike’s disease—still so mysterious to medical professionals—and enlightens the reader with resources providing academic context.
First and foremost, however, this is a warts-and-all journal about the reality of living with the cruel condition … the heartbreaking moments as well as the happy ones. It is a must-read for anyone searching for hope amid the despair. And, above all, proof that, through it all, the one thing Mike has never forgotten is his love for Sherry.
A portion of the proceeds from the sale of this book will be donated to Dementia/Alzheimer’s research.
Descent into Dementialand-A True Life Love Story
Descent Into Dementialand is a memoir, and at its core, it is a love story told under pressure. Sherry Hobbs writes about her husband Mike’s decline through Logopenic Progressive Aphasia, a form of dementia, and about the long emotional work of loving someone as the person you know begins to slip beyond reach. The book follows their shared life, the first warning signs, the diagnosis, and the stages that follow, all framed through Hobbs’s extended metaphor of “Dementialand,” with its shifting parks of FrontierWorld, AdventureWorld, FantasyWorld, and the lonely TomorrowWorld reserved for those left behind. It is personal, structured, and painfully clear about where this road leads.
The writing feels direct. Hobbs does not dress this experience up as something noble and tidy. She lets it be hard, repetitive, frightening, absurd, and sometimes even funny. I appreciated that. In a memoir, honesty is everything, and this book earns its emotional weight because it does not pretend caregiving turns a person into a saint. She makes room for devotion and irritation, tenderness and exhaustion, grief and stubborn loyalty, often in the same breath. That mix gave the book a lived-in feel. It felt less like being handed a lesson and more like sitting across from someone who has decided to tell the truth.
I also thought the author’s biggest gamble, the whole Disneyland and black hole framework, worked more often than not. It gives shape to an experience that is otherwise shapeless and cruel. The image of crossing from “Normaland” into a place with no exit is simple, but it works. So does her sense that the person with dementia and the caregiver are traveling through the same crisis in very different ways. At times, the metaphor is theatrical, even a little overbright, but I think that is part of the point. Hobbs is trying to map confusion with the tools she has, and the result makes the book more memorable. Beneath that structure, what I kept hearing was a wife refusing to let clinical language be the only language available to describe what is happening to her husband.
I would most strongly recommend this book to readers of memoir, especially those drawn to family stories, illness narratives, and caregiving books that do not shy away from the mess of real life. I think it would also mean a lot to spouses, adult children, and friends trying to understand what dementia does not just to memory, but to a shared world. It’s a candid memoir shaped by love, fear, humor, and endurance. For readers who want something polished but human, painful but generous, this one is worth their time.
Pages: 334 | ASIN : B0F6RK1VND
Life Giving Dementia Care
Life Giving Dementia Care: Let’s Talk: How to Bring Confidence, Compassion and Joy Into Your Role as a Caregiver is a half memoir half guide book by Toni Kanzler about, as the title suggests, patients diagnosed with dementia.
In the very first few pages of the book, we find out that Kanzler is a woman with many ambitions; however, being a caregiver was never one of them, as is the case with most caregivers. She found herself in a situation where both her parents were dementia patients and passed away due to a terminal illness. Besides taking care of her parents to the best of her abilities, this was a wake-up call for Kanzler that she is at a high risk of getting dementia. In the hopes that her sons would take care of her if and when that time comes, she decided to leave them something where she would point to the mistakes and good things that happened while she was a caregiver, so they don’t make the same mistakes and have more joyful moments. Thus this book was created.
The book is divided into a few parts covering the early, middle, last, and after stages. Kanzler takes us through the whole journey from the earliest symptoms like crying and then forgetting that they have called, doctor visits and diagnosis, the hardships, mistakes, good times, saying goodbye, and the aftermath of it all from a caregiver’s point of view as well as a patient’s point of view to better understand what our loved one may be or will be going through.
Toni writes in a casual yet deeply touching tone, from her introduction and her stories to the book’s final words. Yet, she manages to get her point across to anyone who decides to give it a chance or needs it.
And just as every book finds you at the right time, this one found me just a few weeks after losing someone dear to Alzheimer’s. I was nowhere near being the caretaker of my loved one or even involved in helping her, so this book was almost a lecture about what the people closest to me dealt with because of the illness.
Life Giving Dementia Care by Toni Kanzler is primarily targeted at caregivers. Still, I recommend it to anyone dealing with or dealing with this disease, medical and psychology students, or anyone just eager to learn something new.
Pages: 237 | ASIN : B08PYM45YD
