Losing My Mind: An Intimate Look at Life with Alzheimer's

by Thomas DeBaggio

A fifty-seven-year-old writer who is afflicted by the early onset of Alzheimer's disease, provides a poignant and powerful journey into his memory and the pain that comes from its loss, revealing a man who lives life to the fullest by recollecting the memories of his youth, family, wife, and son. 50,000 first printing.

Genres: Nonfiction, Memoir, Psychology, Medical, Biography, Health, Mental Illness

224 pages, Hardcover

First published March 1, 2002

Reviews

[Petra X · Rating 3 out of 5]

Thomas DeBaggio was the son of hard-working Italian immigrants. He was a devotee of Holden Caulfield's hobby of spotting fake people which tied in nicely with his job - a muck-raking journalist. Later he married an artist and the pair of the became real children of the 60s anti-Vietnam movement before finally settling on being a commercial herb nurseryman and publishing several acclaimed books on herb farming. Not that kind of herb. Actually I'm not sure about that. His story of early-onset Alzheimer's from his diagnosis at 57,, is frantic with anger and worries for what comes next in the progress of this dreadful disease. Despite the repetitions in his telling, it is written well. At the end, the last few words, my eyes burned with tears.

I read about the author. He wrote another book, When It Gets Dark: An Enlightened Reflection on Life with Alzheimer's, I can't bear to read it. He died in 2011 aged 69, after having spent the last few years in an institution where he deteriorated to not being able to speak, move his hands or even recognise his wife. Nothing but a shell left and any human desires that still vibrated within the ever-frailer human shell remained locked inside - who was to know? A cruel and tortuous death. So sad.

My uncle who was world-famous in his speciality (anaesthesia) died the same way. He took an overdose after he started to wander and get violent, but his wife found him. Everything he did to end his life was frustrated. This was so cruel. In the institution to which he eventually moved to, out of respect for him as a doctor he received the very best of life-prolonging care and my cousins say that at the end they didn't know if he knew them, he couldn't speak or hardly move, just like a new-born baby, lay there. Life had come a full-circle for him too. But it's not supposed to.
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Note on the audio I don't think I would have got through this book in print. Because of the author's Alzheimer's of which this is a true chronicle, it was too repetitious, jumped around from his past to his present and worries for his future, included medical reports and all sorts of odd snippets, all of which worked in audio, but I personally would have found tedious to read.

Totally rewritten 10 Feb 2018 on listening to the audio book again

[Sharon Orlopp · Rating 5 out of 5]

Thomas DeBaggio was diagnosed with Alzheimer's at age fifty-seven. He had already written and published three books.

He undertook the challenging task of writing about his personal progression of the disease. It is an incredible firsthand account of Alzheimer's.

Powerful book, particularly for those who are dealing with Alzheimer's diagnosis of themselves, friends, or loved ones.

[Trish · Rating 5 out of 5]

I got this book a couple years ago after learning my mom had Alzheimer's and seeing an interview with DeBaggio's wife on the Today show. I read a little into it and was soooo confused that I put it down and didn't pick it up again until this summer. My mom's Alzheimer's has progressed into Stage 5/6 and I'm learning more about the disease and understanding whats happening to her. I started the book from the beginning again and now completely understand DeBaggio's frame of mind!!! The confusion of writing is sort of how my mom's randomness seems. I've not read an Alzheimer's book from the point of view of a person with the disease. I have an even more broken heart for what my mom is experiencing, however, I am more determined (more than EVER), to cheer her up and to plan activities with her where she won't have to fight to find words. Activities that will warm her heart and then make her smile for REAL again.

[Jafar · Rating 3 out of 5]

For the upper-middle and higher classes of modern wealthy countries where war and poverty and hunger are only seen on TV happening to others, and the sick and the elderly are pushed out of sight, and a long healthy life is considered a birthright, the reaction to death or the news of a terminal illness is not just fear and sadness; it’s also anger, bewilderment, self-pity, and a feeling that one has been wronged. There’s a fantasy and illusion that death itself is almost a lifestyle choice. All you need to do to avoid it is pilates and hot yoga and eating organic, grass-fed, free-range, non-GMO, gluten-free, handcrafted whatever purchased at your local farmer market. If death comes knocking – like when DeBaggio is diagnosed with “early” onset Alzheimer’s at 57 – the response is something like: HOW DARE THE UNIVERSE TREAT ME LIKE THIS? I’m still young. I had plans for decades of easy golden retirement. I didn’t do anything to deserve this. I may sound callous, but there’s too much self-pity in this book. “Oh, I’m so hurt. Oh, I’m so angry. Oh, I cried so much yesterday.”

Listen, people. If you’re past 50 and lived a good life – you were not born crippled and invalid; you grew up with your family; you had food to eat; you slept at night in peace without worrying that you or your loved ones may get murdered or raped; you had friends; you loved and were loved – then consider yourself extremely fortunate, not just by the historical standards when life expectancy was 30 years and it was a miracle to reach 40 with a full set of teeth, but also compared to how billions of people still live. If death taps you on the shoulder, hold your head high, enjoy the rest of your time the best you can, and go out with dignity and magnanimity. To think that death is unfair is simply ridiculous.

[Edward Amato · Rating 5 out of 5]

I thought this was a powerful book providing great insight in Alzheimer's and Dementia. While reading this I realized how blessed I felt and how sorry I was for the pain that Tom went through. I have already lived 5 years past the age of his diagnosis and look back at those 5 years of memories with great thanksgiving.

[Mary K · Rating 3 out of 5]

DeBaggio, who died many years ago, writes about what it feels like to receive a diagnosis of Alzheimer’s. Unfortunately, his forays into his childhood aren’t interesting - he obviously wrote those parts as a way to preserve his past for his family and friends. Also, since this is an old book, the info on Alzheimer’s is outdated. His own reflections were wonderful - heartfelt and well-written. My favorite statement of the book was the author reflecting on how he should do something he loves before he dies and realizes he’s always some exactly what he loves.

[Jim · Rating 4 out of 5]

This is now the fourth book in a row I’ve read about Alzheimer’s and the first by an actual sufferer; the novel I read was written from the perspective of a sufferer but the author didn’t have the disease and so it was a more polished and structured book than this although not a bad book and clearly well-researched. This book is the real deal and a much harder read. It’s not a hard read in the sense of it being an upsetting book; it focuses on his experiences whilst in the early stages of the disease and it’s only in the last few pages where, for example, he calls for his mother at night after having a nightmare that you see what the future’s going to be like and there’re other books that describe that vividly albeit from a carer’s point of view. No, this is a book describing a man coming to terms with losing himself. What makes it a hard read is that he’s chosen to write the book in a style that emulates how his mind is working/not working. There is a rough chronology to the work but his jumps about from here to there and so it takes a while before you start to build up a picture of this man and his life. He’s not lived the most exciting of lives but his time as a journalist during the sixties and seventies was interesting. He inserts quotes from journals to explain the factual elements but strangely enough chose a lot of things that didn’t rehash what I’d read elsewhere and I was grateful for that. Some of the entries are just one or two lines long, things like “There is death working away in my body. I live there in the company of fears,” “What am I doing here?” and, for me the most powerful quote in the whole book, “Alzheimer’s has taught me that sometimes it is wise to look in the same place many times for the things you desire.” Pages and pages of these could quickly become maudlin but there are just enough of them and their brevity and poignancy jump out at you.

The author has made a real effort to be open and honest. That you’re left at the end of the book wondering about many of the things he’s mentioned is probably the nearest he was ever going to get to communicating how he must feel; the arbitrariness of the disease’s course definitely comes across. I’ve not found a single book yet where I could say, “This is the only one you’ll need,”—I’m not sure any one book could do this subject justice—but if you were making a shortlist I’d definitely include this one.

[Karyl · Rating 4 out of 5]

My grandfather was diagnosed with dementia in his 80s. Even though he had lived a long, full life, it was still devastating to him and to our family. A dapper and intelligent man with a PhD who had taught history at a private university, he was definitely not himself by the time he passed away. As a bookworm myself, the saddest part for me when my mom told me that he could no longer read a book because he couldn't remember the top of the page by the time he reached the end of it. I was spared most of his degeneration, thanks to my husband being stationed far away, but when I was able to visit, I noticed that my grandfather had gone quite mute, as DeBaggio mentions in his memoir. I suppose like DeBaggio he'd rather stay quiet than to remind people of the confusion raging in his brain.

This is a rather heart-wrenching memoir. The progression of Alzheimer's is obvious in the repetition of some of DeBaggio's thoughts; I'm sure he didn't realize he'd already written such a thing earlier in his memoir. The fear he shares with us is raw and honest; he doesn't want to become a burden to his wife of many years, but he promised her he would stay alive as long as possible. He can feel the loss of speech, comprehension, the ability to locate himself even in his own hometown, on a daily basis, and every day he knows he's lost a little more. I cannot even imagine how scary that must be.

My favorite parts of the book were the segments in which he discussed his childhood and his young adulthood. The northern Virginia that I grew up in was vastly different from his Arlington, an area that still felt like a small town in the 1960s and 70s. To hear how he refused to pander to the big bosses and to always fight for what's right, even in the face of losing the job that supported his wife and child, restored my faith in humanity. But it also broke my heart to read about his fears for his son as to whether he passed on his Alzheimer's, this terrible diagnosis, to him.

This isn't an easy book to read, but I think it's an important one. It's not many of us who have never been touched by Alzheimer's. This memoir tells the story of one suffering from it in his own words.

[Kate · Rating 5 out of 5]

Thomas DeBaggio's Losing My Mind is written by a man with Alzheimer's. It's a fascinating, devastating book.

I listened online to a few of his NPR interviews as well. He wants to take the taboo out of the disease. He wants people with the disease to state out loud that they have it and to tell people what it's like. He thinks this will help propel a cure.

Amazingly enough, he wrote a second book after this one, which I have on order. I learned that now, however, he no longer reads or writes. He is able to speak a little, and he lives with his wife. Every day she takes him to the family-run nursery where he sees his son and the plants he grew for many years.

[Donald · Rating 4 out of 5]

The way this book was written, one could read it in small sips. There are double spaces between what he was experiencing while writing, his early years, italicized quotes from various papers written by professionals in the field during the time of the writing of this account, and italicized one liners covering what he's thinking. So you could throw your bookmark in just about any-old-time and not have to go back much to get back into it.
While what Thomas covers is done well and I am grateful for it, the part of Alzheimer's in which even the fundamental parts of memory loss have been left out.
I've seen it.
When the patient forgets what a fork is for or even what to do when food is spoon fed to them is the most upsetting. In the final days, hours, and minutes, the poor soul forgets to eat or how to eat and even possibly to breathe.
Alzheimer's is a true horror show I wouldn't wish on anyone.

[Daniel · Rating 5 out of 5]

I first read Losing My Mind in 2014. I had very mild cognitive impairment at the time, but I knew I was likely on the Alzheimer's trajectory due to my loss of smell and two copies of the APOE4 allele. I only gave it three stars in 2014, but on reading it now in 2022 when I have mild dementia from Alzheimer's disease confirmed by PET scans, it is definitely a five star read. Why did I give it only three stars eight years ago? I think I found the frenetic structure hard to follow, switching from old memories of childhood to current issues with his own cognitive problems to segments about new understanding and advances in Alzheimer's as of 1999. This time I could relate to most everything he described. The jumbled organization seemed to set the tone of what Alzheimer's is really like, not being able to stay on track for more than a few minutes at a time. The hopeful Alzheimer's science as of 1999 was already out of date by by 2014. But now it sadly reflects the frustration in our failure to find a cure for Alzheimer's. Losing My Mind and Greg O'Brien's On Pluto: Inside the Mind of Alzheimer's are the two best books I have read about what it is really like to have this disease.

[Tammy · Rating 4 out of 5]

An interesting and provocative exploration of dementia and Alzheimer’s from someone who is living it personally. Trying to get it all down before it becomes impossible to do so.

[Tee Minn · Rating 4 out of 5]

This was a tough book to read initially because the author has Alzheimer's and the flow is from his perspective. After I got a sense of his confusion, I appreciated his struggle more and the pain is then stronger. What passion he had to explain his loss. He repeats how sad he is that his wife is now saddled with his loss, and you know how that is heavy on his mind. It is interesting to see how the long term memories fade slowly, but visual and language skills -the short term memories - are the beginning of knowing you are losing your identity, your mind. I appreciated his struggle and love of writing, as he had many crafts and writing was one, but in the end he says it is insurmountable, and he faces his death. You will not read a more vivid book on Alzheimer's.

[Terry Perrel · Rating 4 out of 5]

A memoir that starts with the testing of a 57-year-old man's for Early Onset Alzheimer's and how the diagnosis changes his thinking/perceptions and the lives of those he loves the most. Also, distinguishes between normal aging of the brain versus disease and considers genetics/undiagnosed ancestors in the role of early onset.
The book is a combination of research abstracts, memoir, brief passages of stream of consciousness, and reflection.
Ten years after the diagnosis, the author, who often appeared on NPR, is alive. There is a sequel to this memoir.

[Kathy · Rating 3 out of 5]

The author can write so beautifully
'Dear Joyce, When you can't hear my voice anymore, will you be able to feel my love?'
so heartbreakingly
'Once in a while I hear the wind whistling through my brain'
such perspicacity
'There are still a lot of children dressed as adults in politics'
But there are times when I could not follow his line of thought. I don't know if it was I or if (as he said) it was him writing the way his brain was working.

[Kimberly Westrope · Rating 3 out of 5]

This an interesting memoir written by a man with early onset Alzheimer’s. He writes about what he remembers from his past, what he struggles with in the present, and about the medical progress being made in diagnosing and treating Alzheimer’s. As you would expect, it was difficult reading at times, but very insightful and interesting to be let inside his mind and his heart during this journey.

[Sharon · Rating 3 out of 5]

First hand account of what it fees like to have Alzheimer's, told by a writer who developed early-onset Alzheimer's dementia at the age of 58. Interspersed with citations of new treatments being explored.

[Roxie · Rating 5 out of 5]

This book has sat on my nightstand for at least a couple years. I seemed to always find a murder mystery, or gardening book to avoid it... but now I've read it...I didn't like it, because I hate Alzheimer's Disease...but I read it... beautifully written...stunningly sad...powerfully strong... and like living through my Mom's life with Alzheimer's Disease years back, Mr. DeBaggio's words have seeped into my psyche, making me check myself for signs of decline, catch my own forgetfulness, chalk up the times I have not exhibited the symptoms as a victory!

How brave to go through the tests and face the diagnosis...I won't do it...at least not intentionally, though I am suspicious at age 71 that people are giving me "mini mentals" at odd times during the day. How incredible for him to take walks, make it back home, then wrestle with the words to tell the tales of who he met (or maybe did not actually meet) on the sidewalk... just the struggle to find the words, then spell them out, and get them down into book form. I have tried to imagine the time it took him to complete one sentence, when he describes how his fingers do not hit the correct letters on his keyboard. Painstaking, and determined. Incredible drive and resolve. Incredible support from his Joyce, and his Francesco and all who know and admire him.

He describes so well the creeping confusion, suspicion, dread... I saw those same things overtake Mom gradually and completely through the years she lived with the diagnosis. Oh, and the advice, and the "helpful" hints...I remember those came in fast and furious and often... and there was sometimes the relief of something funny hitting everyone at the same time - laughter easing things now and then.

God, How I hate this disease...
Read this if you are looking for someone to admire... you SHALL admire him...

[Bookewyfe · Rating 5 out of 5]

I wanted to read this book quickly to get it out of my house, and donate it to a local little free library. These memoirs are all too personal to me—as a hospice volunteer I spend time with patients (and their families) who have this demon of a disease; my father has it too, and as of now, has been on hospice almost 3 months. The author was diagnosed with early onset at only 57 years old, and died at 69. Here, he shares his early experiences with the disease, writing in a unique way, in increments: memories of childhood, adolescence, adulthood; research on the disease; the current hell he was experiencing each moment, day, and night.

He shares the reactions of family, friends, and customers from the gardening business he ran for 25 years. Some people sent him unwanted religious information and false hope cures in the mail. He did an interview with NPR and wrote another book.

In the beginning, he wanted to die because he knew what was coming and was already so miserable, but his wife pushed back, so he chose to ‘stay’ and try to record his experiences in an attempt to shed light on this horrific thief of all thieves: Alzheimer’s. Tissues will be needed.

[Jace Eaton · Rating 4 out of 5]

Tragic book with amazing insight on what it is like to have your mind deteriorate from Alzheimer’s. The writing includes DeBaggio’s struggle with his diagnosis, interspersed with his life history and citations from medical journals. I think I would have preferred to have a more clear story progression rather than bouncing between the three different periods. Also with the book being published in 1999, some of the medical information is no longer relevant, so it got to a point where I would skip over those sections to continue reading about his personal story. It was sad seeing him be hopeful for experimental treatments, knowing that even today we still know very little about the disease.

[Rosario Juarez · Rating 5 out of 5]

I highly recomened this book. Alzheimer's is not talked about, i think there needs to be more awareness.  I wish i would have know about and read this book when my mom who suffered from Alzheimer's was still alive , because i learned of some things that are out there to help when one wonders off to be able to find them. I was telling my dad about how i find it amazing how even though Thomas was loosing his who he was he was able to write this book, which makes it more real and raw...

[A.M. Arthur · Rating 5 out of 5]

This is a fascinating, heartbreaking look into the mind of someone slowly losing the battle with Alzheimer's. My mother and grandmother both suffered from elements of dementia in their final years (not from Alzheimer's, but another neurological disease), and this book gave me some insight into what that might have been like for them. I'm grateful Mr. DeBaggio and his family chose to tell this story and share it with the world.

[Julia Dwyer · Rating 5 out of 5]

Thomas does a great job really opening up in this book. It’s a good reflection of who he is both during and prior to his Alzheimer’s diagnosis. I think the constant moving back and forth between the “present day,” the past, quotes from himself, and quotes about dementia represent the back and forth he feels day to day. It was a great inside look. So many accounts on dementia are faith based, which is great, but it was also good to read from a nonreligious perspective.

[Pam · Rating 5 out of 5]

This is a courageous first person account of living with Alzheimer’s. It is a glimpse inside the head and heart of someone living with the disease. It is a gift to the rest of us that Thomas DiBaggio is a writer and so writing was his way of processing his experience after the diagnosis.
This may be a difficult read for some but it is very powerful.

[Ellen · Rating 4 out of 5]

Truly a personal accounting of Alzheimer's disease, giving the reader a first hand glimpse from the writer's perspective experiencing this devastating disease. DeBaggio gave me a better understanding of what an uncle perhaps went through dealing with the disease, and a friend recently diagnosed. If you are personally know someone, take the time to read it.

[Darshil Chauhan]

Didn’t hook me after 20 pages or so. Novelty wore off.

The narrative is intentionally disjoint, to simulate the effect of Alzheimer’s that the author was going through. I applaud this choice. But for me it meant I didn’t feel like picking up this book again and again because I knew the experience would be fragmented.

[Kate Gutes · Rating 5 out of 5]

Great use of structure to try and emulate how a mind falling apart would look.

[Kate · Rating 2 out of 5]

Seemed self-involved even before the illness. Just couldn’t relate to him and the value to the public he so earnestly attributed to his writing of this book.

[Ben Griffiths · Rating 4 out of 5]

Interesting insight into the mind of an Alzheimer’s sufferer.

[Keeley · Rating 5 out of 5]

Absolutely fantastic. One of the most moving personal accounts of dementia I've ever read.