Somebody I Used to Know

by Wendy Mitchell

Wendy Mitchell had a busy job with the British National Health Service, raised her two daughters alone, and spent her weekends running and climbing mountains. Then, slowly, a mist settled deep inside the mind she once knew so well, blurring the world around her. She didn't know it then, but dementia was starting to take hold. In 2014, at age fifty-eight, she was diagnosed with young-onset Alzheimer's.

Mitchell shares the heartrending story of her cognitive decline and how she has fought to stave it off. What lay ahead of her after the diagnosis was scary and unknowable, but Mitchell was determined and resourceful, and she vowed to outwit the disease for as long as she could.

As Mitchell learned to embrace her new life, she began to see her condition as a gift, a chance to experience the world with fresh eyes and to find her own way to make a difference. Even now, her sunny outlook persists: She devotes her time to educating doctors, caregivers, and other people living with dementia, helping to reduce the stigma surrounding this insidious disease.

Still living independently, Mitchell now uses Post-it notes and technology to remind her of her routines and has created a "memory room" where she displays photos--with labels--of her daughters, friends, and special places. It is a room where she feels calm and happy, especially on days when the mist descends.

Genres: Nonfiction, Memoir, Biography, Health, Book Club, Psychology, Mental Health

320 pages, Paperback

First published June 5, 2018

About the author

Wendy Mitchell spent twenty years as a non-clinical team leader in the NHS before being diagnosed with Young Onset Dementia in July 2014 at the age of fifty-eight. Shocked by the lack of awareness about the disease, both in the community and in hospitals, she vowed to spend her time raising awareness about dementia and encouraging others to see there is life after a diagnosis. She is now an ambassador for the Alzheimer's Society. She has two daughters and lives in Yorkshire.

Reviews

[Petra X · Rating 4 out of 5]

I finished the book and the mystery of how come she couldn't carry on a simple conversation but could write a book was revealed. She could write, the dementia didn't affect her ability with words although there were times when she couldn't recognise the letters on the keyboard. And, of course, there was a ghost writer.

The ending reminded me of the last words of the author, Jean-Dominique Bauby,
of The Diving Bell and the Butterfly, a memoir of locked-in syndrome, as he was talking about a cure, " We must keep looking. I'll be off now." Wendy Mitchell participates in any kind of research into Alzheimer's, she, us, all of us, must keep looking.
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I reread Thomas deBaggio's Losing My Mind: An Intimate Look at Life with Alzheimer's yesterday. Before that there had been Still Alice and now there is this. It is a brilliantly-written journey through Alzheimer's by the author who has it. What is strange is that she writes of what she forgets, what she loses, when she can't type, yet the writing of the book doesn't deteriorate even though all her other abilities are deteriorating. I'm about a third of the way through. Maybe it will all work itself out. Meanwhile it just feels like the novel Still Alice rather the author going through this. Mystery solved. Ghost writer. GR records now corrected to show this.

[Diane S ☔ · Rating 4 out of 5]

I never thought I would be writing a review of a book, where a woman at the age of 58, diagnosed with early onset dementia, and call it the most inspirational story I have ever read. Of course it's not a story, it is a true happening, Wendy's life now, but one she intends to live to the fullest. The things she does, how she finds ways around her diminish capacity truly fills me with awe. One particular thing she said really hit home, is incredibly motivating, and that is that she is not suffering from dementia, she is living with dementia. The key word being living, and she is certainly doing that to the best of her abilities.

She can no longer drive, she gets a pink bicycle. She sets alarms on her iPads with things like, take your medicine, eat breakfast, etc. Whatever she can do to make it work for her. She had to retire from her job at The National Health organization, and from experience realizing how little understood and how little help is available to those who like her life a life full of challenges, she travels, with a great deal of preparation, to give talks to students, organizations etc. She was asked to preview the movie, Still Alice, and then invited to attend the premier.

She is a strong woman, a courageous woman, has a blog where she posts her daily challenges, of which there are many, more so as time passes. She has not lost her ability for words yet, which with the help of a ghost writer she was able to share her story. Her teo adult daughters, one now a nurse, are a great source of comfort and assistance. Her greatest fear is how this effects them, and of the day she will no longer recognize those two dear faces. Until then, she will continue to find work arounds, and live her life to the fullest. She is truly awe inspiring.

[Canadian Jen · Rating 4 out of 5]

Early onset dementia is scary as f*^k. This is an extremely sensitive and honest perspective of a woman diagnosed with Alzheimer’s at the age of 58.
Wendy Mitchell found out she had the disease then set about fighting this with every ounce of strength she had. Absolutely, this is such a debilitating disease for not only the afflicted but for the families. I lost my dad to Alzheimer’s last year and my mom is in a nursing home with dementia. It is a disease that creeps up and then tries to corner you into its grasp of eating away at the person you once were.

Mitchell does such a wonderful job of expressing her fear but also her victories against the losses of her memory. I had no idea a person could live with this for 15-20 years! It certainly gives me hope that one day there will be a cure for this and it definitely provides some great coping mechanisms to fight this bastard of a disease.

I’m not sure where you are now, Wendy, but you’ve certainly taught me that there is a beginning, a middle and an end with this progressive brain disease. Respect. 4⭐️

[Rosh ~catching up slowly~ · Rating 4 out of 5]

In a Nutshell: The memoir of a woman who unexpectedly became the face of young-onset Alzheimer’s in the UK. Ghost-written with the help of a journalist, this book covers her diagnosis, reaction, coping strategies, everyday experiences, and her plans for the future.. The writing is filled with pain and frustration as well as hope. Much recommended. Do note that it might be triggering for Alzheimer’s patients and also caregivers.

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A reading challenge I am participating in needed a book penned by a ghost-writer. I was very clear that I didn’t want to opt for any celebrity memoir, most of which are sanitised fake versions of their lives. Nor did I want to try fictional novels that straddled the line between pseudonymous and ghost-written. (The Nancy Drew series, for instance.) Google led me to Wendy Mitchell’s memoir. One look at this book’s blurb, and I knew I finally found the right option for the prompt. (The fact that the title reminded me of one of my absolute favourite songs – Gotye’s "Somebody That I Used to Know” was the icing on the cake.)

This book is written in Wendy’s first-person perspective, beginning from her diagnosis in 2013 when she was just 56, till about 2017-18. You might wonder how a woman with dementia could pen an entire book when she couldn’t even read a novel without forgetting the earlier chapters. That’s where journalist Anna Wharton comes in. When Anna saw a video Wendy had made about her routine as someone living with dementia, she knew that she wanted to pen a book looking at the world through Wendy’s eyes. She approached Wendy with this concept of a personal memoir, and the rest Is history. You can read more about their interactions here: https://granta.com/how-do-you-write-a...

Wendy had always been an organised person, active physically as well as mentally. A single mother to two adult daughters and a non-clinical team leader in the British NHS, she never expected that her life would be altered so abruptly, and that too, with a disease that is supposed to affect only older people.

I won't tell you more about Wendy as I want you to get her story, her tactics to cope with Alzheimer's, and her tips on how to interact with someone living with dementia, in her own words. Is dementia the end? You will learn the answer through Wendy. I'll only focus on my feelings while reading this courageous yet heartbreaking memoir.

While I experienced a variety of emotions on this journey through Wendy’s post-diagnosis life, the dominant emotion was one of fear. The idea that dementia can happen to any one and any time is not unknown, but we never imagine its happening to us. Seeing such a high-functional achiever being forced to accept a diametrically opposite mode of living was enough to create chills in my heart. (Plus, the fact that she, an avid reader, couldn’t read novels any more as she kept forgetting the plot. The sheer horror of this! 😢) I'll never forget her bookshelf-memory analogy.

In between Wendy’s “present narrative”, there are some sections written in second person and addressed to her past self. I found these overwhelming, but I cannot deny that these chapters elevated the overall reading experience. As she talks to her younger self, she offers insights into her earlier years, revealing to us a capable and independent woman who didn’t allow her single-parent status to affect her daughters’ upbringing as well as her career.

The writing gets a bit repetitive at times, especially in the second half, but considering the person it is focussed on and how repetitious her own day-to-day life must have been after a point, it's easy to understand and forgive this.

This book was published in the year 2018. I googled to see how Wendy was doing now and discovered that she passed away in Feb 2024 – ten years after her first diagnosis of young-onset dementia. What caught my eye was how she passed away. I'm still processing my feelings on the situation, but either way, I am happy for her that she went the way she wanted to.

Overall, this is a very poignant read that won’t leave the reader unaffected. It is bleak at times, but there is also a strong thread of hope and courage. Basically, it is not a story of self-pity but of positive and constructive action. It challenges our notions of dementia and Alzheimer's, and also provides some helpful content on dealing with those who have this debilitating disease.

I found this a tough book to read during this blessed time of Advent, as its heart-breaking – and at times, fear-inducing – content didn't exactly go with the joyfulness of the season. But true believers know that Advent isn't about partying but about reflection, about hope, about faith. Wendy's story reminds us to be grateful for what we have, because we never know when fate can turn against us. Whatever happens, hope helps.

Definitely recommended. To anyone interested in knowing what dementia feels like from the patient’s eyes, this book will prove a valuable resource. Do note that the book might be triggering to sufferers or caregivers of dementia.

4.25 stars.


You might also be interested in checking out Wendy’s blog, which she started a year after her diagnosis to remember the tinier details of her life before she forgot them entirely: https://whichmeamitoday.wordpress.com/



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[Sharon · Rating 5 out of 5]

As we all know Alzheimer's disease is a horrific and debilitating disease and is normally associated with the elderly, but for some this is not the case as fifty eight year old Wendy Mitchell quickly learned.

Somebody I Use to Know is a moving memoir by Wendy Mitchell. Wendy held a busy job at the British National Health Service and in between her busy work load she raised her two beautiful daughters on her own. On the weekends she tried to keep fit by running or sometimes she would go mountain climbing. Then one day bit by bit, she could see a few changes within herself and she knew something was amiss.

As we follow Wendy on an emotional roller coaster we learn exactly how this disease changes Wendy's life and for those who are close to her, friends, family and work colleagues. Having experienced first hand with varying family members I know only too well what an awful disease this really is and whilst reading this book, my heart was going out to Wendy and those close to her.

An inspiring and emotional book and one that will remain with me for a long time. Highly recommended.

[Gary · Rating 5 out of 5]

This is an inspiring read, a memoir written by Wendy Mitchell who was diagnosed with dementia at the early age of fifty-eight.
This book became more significant to me when my father started showing signs of dementia over the last few months. It is still early days for my father and he is still awaiting tests before been diagnosed but many of the things Wendy describes in her book were very enlightening and have helped me personally with my understanding of this awful illness.
This book is the first book written by a person suffering from dementia and is truly inspirational, thought provoking and a true insight into dementia. Having seen how my fathers mind has deteriorated over such a short time, I can see that this book must have taken so much effort to write and I have nothing but admiration for Wendy.

[Chrissie · Rating 4 out of 5]

ETA: do you want to see Wendy Mitchell? Do you want to know more about her life and her book? Click on the link to The Guardian article below, at the bottom of my review.

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Wendy Mitchell, the author of this book, was diagnosed with young-onset Alzheimer’s in 2014 at the age of fifty-eight. This is a book about how it is to have Alzheimer's. The author is a remarkable woman--a strong woman with character and guts. She is a woman I highly admire. She has written this book with the help of ghostwriter Anna Wharton. The two together have created a book well worth reading. It is both informative and well written. The reader comes to understand how a person with Alzheimer's experiences the world around them. Due to its topic, I picked it up with trepidation. It turned out to be a captivating and very satisfying read.

The prose shifts from the informative and clear to being emotionally expressive or lyrical, depending upon where we are at that point in the book. I am quite simply trying to say that the writing is exceptionally good.

It becomes very clear how difficult Wendy’s life has become. She is still struggling with the illness and remains living at home alone, not in a care center. How she manages is carefully explained. This is important because otherwise it would be impossible to believe she would be capable of doing all that she does. For example, a step by step description of what she must do when she travels is detailed. She travels often. Both the difficulties she encounters and how she deals with each are described. One comes to feel great empathy for her. Empathy and admiration too. Despite what she must deal with she is happy. She is fighting for her life, and because she is fighting for it she values it.

She plans and thinks about death. She supports assisted suicide. She considers how to best safeguard the needs of her two beloved daughters. They mean the world to her. Divorced many years ago, it is she that has raised them.

Memories of Wendy's earlier life with her daughters are peppered throughout. As Wendy becomes more and more confused these memories are a beautiful contrast to her everyday struggle. They serve as gems to be cherished. They add a beautiful touch to the book; they highlight the value of such memories. Such memories might be disregarded by a person without Alzheimer's. Their value, significance and beauty are magnified given the uncertainty of how long they will remain. The inclusion of these memories demonstrates the attention that has been paid to fitting the different parts of the book together in an effective manner.

I was scared of reading this book. I did not pick it up with pleasure. I knew it would bring back memories of my own father's Alzheimer’s. It did. I could not but help make comparisons between my father's behavior, what he experienced and how he coped with the illness in comparison to Wendy. I learned aspects of the illness that I was unaware of before. Those with Alzheimer's have a heightened perception of sound. With this knowledge I can now better understand why my father acted as he did at family gatherings and in other situations.

The book does not detail how the illness is diagnosed. The book cannot be used as a means of determining if you have the illness yourself.

The book does gives tips on how one can cope with problems that arise, and it encourages better treatment for those with Alzheimer’s. The book is beautiful in that although a diagnosis of Alzheimer’s is heartrending, the author has not lost hope. She has dedicated herself to improving the life of those with Alzheimer’s rather than moping. She is inspiring.

I listened to the audiobook read by Rachel Atkins. She does a fantastic job. You easily hear every word she says, and she uses an inflection that perfectly fits the prose. Fear, hope, sorrow, determination and poignant memories are all perceptively rendered in Atkins’ superlative narration.

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The Guardian article: https://www.theguardian.com/books/201...

[Rebecca · Rating 4 out of 5]

A remarkable insider’s look at the early stages of Alzheimer’s. Mitchell took several falls while running near her Yorkshire home, but it wasn’t until she had a minor stroke in 2012 that she and her doctors started taking her health problems seriously. In July 2014 she got the dementia diagnosis that finally explained her recurring brain fog. She was 58 years old, and a single mother with two grown daughters and a 20-year career in NHS administration. Having prided herself on her good memory and her efficiency at everything from work scheduling to DIY, she was distressed that she couldn’t cope with a new computer system and was unlikely to recognize the faces or voices of colleagues she’d worked with for years. Less than a year after her diagnosis, she took early retirement – a decision that she feels was forced on her by a system that wasn’t willing to make accommodations for her condition.

The book, put together with the help of ghostwriter Anna Wharton, gives a clear sense of progression, of past versus present, and of the workarounds Mitchell uses to outwit her disease. The details and incidents are well chosen to present the everyday challenges of dementia. For instance, baking used to be one of Mitchell’s favorite hobbies, but in an early scene she’s making a cake for a homeless shelter and forgets she’s already added sugar; she weighs in the sugar twice, and the result is inedible. But by the time the book ends, not only can she not prepare herself a meal; she can’t remember to eat unless she sets an alarm on her iPad and barricades herself into the room so she won’t wander off partway through.

In occasional italicized passages Mitchell addresses her past self, running through bittersweet memories of all that she used to be able to do: “It amazes me now how you did it, because you didn’t have anyone to help you. You were Mum, Dad, taxi, chef, counsellor, gardener and housekeeper, all rolled into one.” Yet it’s also amazing how much she still manages to do as an ambassador for the Alzheimer’s Society and Dementia Friends. She crisscrosses the country to give speeches, attend conferences, and advise universities; she writes a blog and has appeared on radio to promote this book. Like many retired people, she’s found she’s busier than ever, and her engagements help her to feel purposeful and like she’s giving a positive impression of early-stage dementia. No matter that she has to rely on dozens of reminders to self in the form of Post-It notes, iPad alarms and a wall of photographs.

This would make an excellent nonfiction pair with Still Alice. The story lines are very similar in places – the incidents while running, the inability to keep baking, and so on. And in fact, Mitchell reviewed the film and attended its London premiere, where she met Julianne Moore. The book is a little too long and gets slightly repetitive, but it is a quick and enjoyable read, and will be valuable to people looking to understand the experience of dementia. Wendy Mitchell is such an inspiring woman. I thank her for her efforts, and wish her well.

[CanadianReader · Rating 3 out of 5]

Rating: 3.5

Fifty-six-year-old Wendy Mitchell was out for her usual jog when she fell, badly banging and bloodying herself. After seeking medical attention, she returned to the place she’d stumbled, expecting to see a pothole or uneven ground. There was neither. A few days later while out on another run, she fell yet again. Aware that she’d been excessively fatigued and had been experiencing a persistent “sensation of a head half-full of cotton wool”, Mitchell visited her GP. A few weeks later (perhaps)—after she’d been slurring her words at work one day—she checked herself into the local hospital to undergo diagnostics. There was vague talk of a stroke, but test results were basically normal. A neurologist sent her to a clinical psychologist for cognitive testing, who suspected incipient dementia, and, some months later, confirmed it.

For some time Mitchell was off work. At the National Health Service, she had been known for the encyclopedic memory and superior organizational skills she brought to the job of scheduling nursing staff at a large hospital in Leeds. When she did finally return to work, she was stymied by her deficits: the computer programs that were the crux and core tools of her work seemed utterly foreign to her. The phone calls from other NHS staff and administrators—a regular part of her work, easily and automatically managed in the past—were completely discombobulating. Often callers did not identify themselves; they spoke too fast, and rarely supplied context details, assuming that Mitchell already had them at her fingertips. Eventually, of course, she told her supervisors and then her colleagues about her diagnosis. Her team attempted to make work accommodations for a time, but these were insufficient to compensate for the cognitive losses. Mitchell was forced by her disease into early retirement.

Written mostly in the first-person present tense, apparently to underscore Mitchell’s living day by day with the disease, the main text of SOMEBODY I USED TO KNOW is occasionally broken up by italicized letters written to her former self. These elegiac letters are addressed to “you”—another person, not herself— someone she was once intimately acquainted with, now gone. “I know life wasn’t easy for you,” she begins one of these messages; “I know life was lonely. I know you worked hard to hide these things from the girls [Mitchell’s daughters], painting a smile on your face and being determined not to let it slip.I remember that even if you did a good job of hiding it from others by making a joke, too proud to let it slip, and never in front of the girls, life was difficult.” While I understand the author and co-writer Anna Wharton’s desire to communicate Mitchell’s sense of the loss of her former self as well as some of her backstory, I found this authorial device contrived and tedious. People don’t address themselves in this artificial way. I also dislike present-tense tellings, which I understand are intended to bring immediacy to a narrative, but which often end up sounding forced and unnatural. Extraneous details are inevitably included, apparently to bring a novelistic quality to the text or to help readers better visualize scenes. More often than not, though, the details turn into text filler and padding. For example, on page 67, we read: “my eyes fall on . . . a Post-it note: Book dentist appointment. I sigh and roll my eyes” and on page 68: “something inside goes cold, a worry starts to whittle away. I feel my eyebrows knit together into a question mark . . .” Really? I don’t think many people notice the movements of their eyes and the “knitting” of their eyebrows. Imagining the latter as a punctuation mark was a bit too fanciful for me. Unfortunately, these unnecessary bodily play-by-plays populate the book. They are silly and detract from an important narrative that would be better served by a simple, plain telling.

Mitchell’s memoir is valuable in that it gives readers a good sense of the feel of Alzheimer’s as it encroaches. I was not surprised to read of Mitchell’s sense, before the diagnosis, of there being something “not quite right”, a general, inexplicable cognitive clouding. What was surprising and alarming to read about were the times in which she would completely blank out. At work one day, for instance, she was, for a short period of time, completely engulfed in a fog. Panicked “by a brain gone AWOL”, she moved through a corridor to the bathroom and sat on a toilet seat “Waiting for the world to clear. Waiting for time to pass.” Until I read this book, I was also unaware of the clumsiness and incoordination associated with the disease and the visual hallucinations that can occur.

Mitchell describes how she tries to find meaning after her devastating diagnosis. (She bakes cakes for a homeless shelter—until she can no longer follow recipes; she writes a blog; she rides a bright pink bike along a special route that includes none of the right turns that appear to hijack her brain.) A great deal of meaning is found in advocacy work and participating in research, which “means I’m contributing to changing the future for my daughters . . . so that one day a diagnosis won’t be filled with emptiness, but with hope of a cure and better understanding and conditions in care homes.” Life is oddly “busier now, more varied and challenging than it ever was when I was at work”, she observes at one point. To Mitchell’s surprise, she quite suddenly overcomes a lifelong fear of animals (cats and dogs), recognizing that her life has become more like theirs: lived in the present moment. She also finds that positive transformation, even personal growth, can occur in those diagnosed with dementia. For example, for most of her life, she had been “an intensely private person”: retiring, shy, a listener. However, as she begins to attend support groups and involve herself in Alzheimer’s organizations, she discovers a new, more open, and social self. About her meeting Julianne Moore, star of the film STILL ALICE, Mitchell writes: “for a moment, I have that strange feeling again, as if Alzheimer’s is a gift, as if we could all learn something from the harsh lessons it teaches.” I admit that I was sometimes skeptical of this kind of gratitude. Maybe, though, as Mitchell herself notes, there is “nothing wrong in making a list of the advantages of having Alzheimer’s. Perhaps it might even help.”

Other topics addressed in the memoir include the medical profession and the media’s negative and limiting language about dementia and the effect this kind of language has on patients; the care-givers’ burden, including resentment and guilt; the impact of dementia on friendships; medications; challenges the cognitively impaired experience in the home (mirrors, TV screens, cupboard and closet doors are particularly problematic); how modern technology (i-pads and cell phones) can assist; and finally, the awkward but important discussions with family about what the future will inevitably bring. Mitchell emphasizes throughout that her daughters are her great loves and that she never wants them to become her caregivers. In some respects, however, they already are—though at the time of the book’s writing, at a distance.

The only other memoir I’ve read from the point of view of a person living with dementia is Gerda Saunders’s MEMORY’S LAST BREATH—a very different book from Mitchell’s, and one in which the author attempted to address the nature of memory itself, how recollections are transformed, remade, each time we retrieve them. Really, when you think of it, it’s a pretty amazing thing that a memoir of any kind can be cobbled together when an author’s brain is failing. As people live longer, more and more of us are likely to face a diagnosis of dementia—a terrible, sobering thought. Personal accounts like those of Mitchell and Saunders put a human face on a devastating disease. Although I do have some reservations about the writing in SOMEBODY I USED TO KNOW, I still found this memoir an illuminating and worthwhile read.

[Julie · Rating 5 out of 5]

My experience reading this book was so poignant and positive that I subscribed to Wendy Mitchell's blog so I can 'hear' her voice every day. She is an inspiration actively looking for the positive in small things and making the most out of each day. Her blog is titled, "Which me am I today? One person's experience living with dementia" and can be found at whichmeamitoday(dot)wordpress(dot)com

In her book, one example of Wendy's positive action to explore new ways to continue to enjoy life is how "reading is a pleasure again, now that I've thought of a way to adapt." She is referring the solutions she discover when she could no longer keep track of the plot and many characters from the heavy volumed sagas she had previously enjoyed.

Rather than accepting defeat and giving up on reading entirely, she perseveres and selects smaller volumes to try. During her exploration she discovers the delights of short stories and poetry, and comes to the realization "that a progressive illness can focus the mind in a very special way."

Wendy writes, "How strange the choice the mind makes, the memories it holds fast," and this has fascinated me also. Why do we remember some events or partial events and not others? Something I will continue to ponder.

I loved her analogy of the book case to explain the memory of someone with dementia to her work colleagues when she is first diagnosed with early onset dementia. "This bookcase is full of books that contain factual memories. The top shelf [...] holds very recent memories, such as what you had for breakfast this morning. By your shoulders are books from perhaps your fifties, the ones that all of us are used to reaching out and taking from the shelf any time we like - no effort, hardly any strain. And by your knees are books from your twenties. And then you get all the way down to your feet, where just beyond the tips of your toes you'll find books from your childhood."

"Having dementia rocks your bookcase from side to side, and it's always the books at the top that fall first, jumbling everything else up, so sometimes what you think of as your most recent memories will come from further down the bookcase, earlier in your life."

Later, she writes about the stark reality and awfulness of Alzheimers: "I hate my disease not for what it's stealing from me now, but what it plans to take from my girls, the havoc that it will wreak on them. It rides rough shod over lives, leaving tattered and shattered skeletal remains where a whole person once stood."

When Wendy moves to a new home she utilizes practical solutions to overcome the panic of not knowing where each door leads to. At the hardware store she buys adhesive letters to label the doors.

Wendy is documenting changes as her disease progresses and notes that "It is not just the joy of cooking that's now lost, but eating too." Something else she has to adapt to.

Along the way there are kindnesses from strangers such as the carpet salesman who becomes thoughtful when she tells him of her diagnosis of dementia and asks her if having carpet with a pile that shows the impressions of footprints would be confusing to her, possibly make her think someone was in her home.

Another time, she asks a shopkeeper if the flower painted tiles also come in a forget-me-not design and explains their significance to her and how she would put it on the front of her house so she could recognize which house was hers. Sadly, they do not. However....

Sometime later a parcel arrives with not just one tile but six! All painted with beautiful forget-me-knots. A personal note is included in the parcel. They are a gift from the shopkeeper. Wendy attaches them to her front door where they will provide, "a beacon guiding [her] home."

In the early days after her diagnosis at age fifty-eight, when researching forum topics hoping to find some that related to what she was feeling she was sometimes "left shocked at the negativity of what [she] read, at how little it resembled the reality of [her] experience."

Healthcare workers and carers missed obvious answers or solutions and dwelled on "nothing you do will be right," and you just had to accept the diagnosis. So, she became an advocate and focused on positive solutions such as making banking and "online services more user-friendly for customers with dementia."

Wendy is an active advocate for educating people on dementia and travels to speak at conferences. For example she was asked to speak at the Royal College of Obstetrics and Gynecologists, which meant traveling from her village in Yorkshire to London by public transport. She has also traveled to the Houses of Parliament to promote research into dementia.

As I mentioned previously, Wendy keeps a blog and one morning when she picked up her iPad her mind becomes blank, her "hands sit in front of [her], ignorant of the task they need to perform." Instead of giving in to despair, she performs an automatic task that immediately brings comfort and familiarity, she makes a cup of tea. "Everything seems better with a cup of tea."

Once again, she sits down with her iPad. This time, she sends some gobbledegook to a friend, who patiently coaches her by typing, "copy my letters, look on the keyboard and find the same shapes," and in time Wendy is typing legible responses rather than gobbledegook. "Thank you, [she] types finally. I'm back."

She write that "There is a strange limbo between life and death when you're living with a progressive illness, that balance of knowing that things need to be dealt with, an acknowledgment of the future, and yet this great urge to live life in the moment, to think about the now and forget this is ever happening." However, dementia doesn't allow her to forget as it "bleeds into every moment."

Wendy has dedicated her life to "reminding people with dementia - or those who care for them - that they can live well."

[H.A. Leuschel · Rating 5 out of 5]

What an extraordinary memoir by a courageous and inspiring woman! I was blown away by this book, often found myself tearing up and also smiling about her sense of humour and ingenious industriousness.
This book is a first of its kind because never before has a person with young onset dementia written an account about her illness and the day to day changes she has had to live with and adapt to. How do you hold on to who you are, the job you do, the relationships you cherish when a disease is cruelly and inevitably taking away your very sense of self? It's deeply moving, emotional and I will never look at dementia the same again and I'm sure Mitchell's story will stay with me for a very long time.
'There is only today', she writes at some point because, although she is trying to find ways to hold on to the past and plan for the future, only in the present do they both converge and make sense, because that's where they join into something we call a personal story. Since being diagnosed at the age of 58, Mitchell has joined numerous associations and organisations, campaigning for more awareness and understanding, so that people with dementia can continue to live their individual lives as long as possible with dignity and independence. This is important as I'm sure we all know or have heard of someone who has been diagnosed with Alzheimer's or is experiencing symptoms of dementia.
My granddad for instance died at the enviable old age of 98, however, I remember vividly how devastating his senile dementia was in the last few years, leaving him disorientated and lost most days. The one only consolation we had as a family was that his decades of nightmares and memories of having survived the 'Stalingrad Battle' massacre in Russia with multiple wounds and lifelong suffering had also been wiped out. He lost himself with it, too though ...
Highly, highly recommended read.

[Lisa · Rating 5 out of 5]

Somebody I Used to Know is a brave and illuminating journey inside the mind, heart, and life of early onset Alzheimer’s disease.—Lisa Genova, New York Times bestselling author of Still Alice

[Ian Payton · Rating 5 out of 5]

It’s difficult to consider giving such a personal and emotional account of someone’s life anything other than 5 stars, but this book deserves it. Wendy, the author, was diagnosed with young-onset Alzheimer’s at the age of 58, and this book charts her progress over the following 4 years.

At the time of her diagnosis, Wendy was still very capable, but had been alerted that something was wrong when she had several unexplained falls, and realised that her thinking was not as sharp as she expected. After her diagnosis, one of the things that Wendy decided to do was to engage with dementia support, outreach, awareness and research organisations - especially as her experience with the earlier stages of the disease would be contrary to many people’s perceptions. She consistently challenged the pervasive impression that the only version of dementia is late-stage dementia - the headline pictures of people in the later stages of life, who have already lost most of their memories and abilities.

Wendy’s story is simultaneously hopeful, frustrating, and tragic. It is hopeful, as it shows quite how possible it is for someone in the early stages of dementia to continue to engage with the world and do those activities that they enjoy - through a variety of mechanisms that support memory (both long term and short), and that give room for the slower mental processing. But it’s also frustrating because it documents Wendy’s progress through a world that is not inherently dementia friendly, and in which Wendy had to forge her own path - not only for the variety of coping strategies that worked for her, but against misunderstandings and unhelpful expectations from people and organisations. And it is ultimately tragic, as Wendy’s story also chronicles the cruel and progressive disease.

The book broadly tells the story of Wendy’s first few years of living with dementia, and many of the accounts of stories and activities throughout the book have similarities to each other - but what differs are the difficulties and coping strategies that Wendy has to navigate. For example, throughout the book Wendy talks about the various events and conferences she has attended, and spoken at, around the country - but by the end of the book, this requires an almost overwhelming number of memory aids and coping strategies. The progressively increasing need for these techniques to navigate through day-to-day life are a powerful illustration of the progression of the disease over the few years that the book covers.

But throughout all this, Wendy’s observations of life with dementia are both heartwarming and very informative. A close family member of mine is living with dementia, and this book has given me such a rare and valuable additional insight into what their inner life might be like - and this is something that I will carry with me.

[Deb Jones · Rating 5 out of 5]

I would describe author Wendy Mitchel as a courageous, candid and down-to-earth person from her writing in this book. She explains her journey from the broad sense of fogginess she felt for months, her eventual diagnosis as having dementia, and all that she has experienced thus far. It is an eye-opening and poignant story.

As a woman over 60-years-of-age, the possibility of one day being diagnosed with dementia or Alzheimer's disease lurks in the back of my mind -- and makes its way to the forefront when I forget a name or my keys or anything of the sort. I cried as I read the reality of the dreaded condition from inside a person who is experiencing it.

I worked for almost 30 years in long-term care, so I'm well acquainted with how dementia manifests itself, but the chance to peek inside the life of someone such as Wendy Mitchell is a special opportunity.

[Sebastián · Rating 4 out of 5]

Lo encontré de casualidad. Me encantó la idea y me gustó la experiencia de las dos voces que cuentan un suceso de vida tan fuerte e inesperado.

Lo recomiendo para acompañarlo con la película o libro de Siempre Alice. También para leerlo y pensar en el documental de La memoria infinita de Netflix.

Algunas citas que me gustaron:

1."La mente no puede evitar proyectar el futuro, desear que un evento feliz llegue pronto o agonizar al contemplar ese mismo futuro bajo una luz más aciaga. Son pocos quienes se dan por satisfechos viviendo en el aquí y el ahora. En lugar de ello, seguimos con nuestras vidas cotidianas pensando que tenemos todo el tiempo del mundo para preocuparnos y lidiar con las distracciones menores de nuestro día a día: el colega gruñón, el autobús que llega con retraso y la lluvia que empieza a caer justo el día en que se nos olvida el paraguas. ¿Cuántas veces nos sentamos el lunes en el trabajo y deseamos que sea fin de semana? ¿O ansiamos que las semanas pasen volando para que lleguen ya esas vacaciones que tanto nos apetecen? Y entonces sucede algo que nos paraliza: un divorcio, una muerte o una enfermedad degenerativa. Algo que nos recuerda que lo único que tenemos es el hoy."

2."Y no hay nada malo en tener esperanza, pero me da la sensación de que esperar es anticipar una desilusión. ¿No es mejor vivir el presente y simplemente tener en mente el mañana?"

3."Todo el mundo recuerda esa sensación de perder algo preciado, un objeto con valor sentimental. Los adultos lo han experimentado varias veces a lo largo de la vida y para un niño es lo más traumático que le ha sucedido nunca. Para las personas con alzheimer es nuestro día a día, aunque no desaparecen objetos, sino nuestros recuerdos más valiosos, las historias que nos convierten en quienes somos. Ahora bien, no perdemos los sentimientos, de manera que el amor debe de estar atrapado tras esos ojos tristes y vidriosos."

4."Si las personas no explican cómo se sienten y los problemas que tienen mientras aún son capaces de describirlos, ¿cómo pueden saber qué pasará después, cuando ya no sean capaces de comunicarse?"

5."Es difícil vivir con culpa, pero la culpa existe para ayudarnos a enderezar las cosas mientras aún existe la posibilidad de hacerlo."

6."¿Cuántas veces al día nos tomamos un momento para hacer una pausa? Nos pasamos la vida yendo a toda prisa de un lado para otro, entre tareas, o entre personas, el trabajo y nuestro hogar. Y sentimos remordimientos cuando estamos ociosos. Hasta que llega un momento en la vida en que algo nos obliga a frenar en seco."

[Julie Durnell · Rating 5 out of 5]

Outstanding! While I don't have dementia and have not experienced it with a loved one, I still found this book to be eye opening, thought provoking, and courageous. I have read Still Alice and Elizabeth is Missing, but they are both fiction and insightful to a point. This is firsthand nonfiction and pitch perfect in my non-dementia opinion. It is told honestly and with wry humor. Wendy's organizational skills become key in her journey after diagnosis of young onset Alzheimers. She becomes an advocate for those who live with dementia or interact with them. I like that she sees it as living with not suffering from. Such a well written and positive slant book-highly recommend!

[Sandy · Rating 5 out of 5]

Thank you, Wendy for sharing your story, for letting us honestly see how this disease affects a person. I inhaled this memoir in one afternoon as Wendy described how at age fifty-eight, her once active life was coming unraveled. I read as she slowly described how her world was changing, how the things that she loved to do were now becoming complicated. To think that at age fifty-eight, this disease was slowly creeping into her life, that this was only the beginning. Wendy’s attitude and resilience made this novel, a winner for me. She didn’t sit back and wait for the disease to consume her nor did she want a pity party as her challenging lifestyle was now coming unraveled. Wendy made modifications where she could and she strived to make a difference.

I was touched when I read this memoir. From her first confused thought to reading her blog, I am grateful that she is taking the time to write and let individuals know firsthand about Alzheimer’s. Since Wendy was diagnosed at the beginning stages of it, reading about the progression of the disease and her thoughts on it, I can understand her challenges and frustrations. Like Wendy said, this is a silent disease. No one can see it so they don’t understand when they can see the symptoms but they don’t know the diagnosis. No one wants to tell everyone their health history nor do they want to explain themselves when things go wrong. So what is a person to do?

I liked how Wendy made adjustments to her lifestyle so she could still enjoy life. From her house to traveling, Wendy saw the obstacles and she tried to find ways to solve them. She wanted to keep working, she tried to keep working but sometimes we don’t see what’s best until later. Who could she tell of her diagnosis? You tell the wrong person and they avoid you like the plague or you tell the right person and they’ll be there for you.

I cringed when she moved, as I thought for sure she would get lost coming home or just the house itself, for there were tons of issues she could have in a house that she was not familiar with. Wendy saw the obstacles in her new house and well, Wendy tackled them and I laughed, she solved them in Wendy fashion.

I really enjoyed Wendy’s memoir and I look forward to reading her blog. I highly recommend this memoir for its insight its honesty, and for learning more about Wendy.

“Life doesn’t have to be dull and risk-free just because you have dementia.”

[Linda · Rating 5 out of 5]

HERO
A person who is admired or
Idealized for courage, outstanding achievements, or noble qualities.

When I first opened this book I had many expectations but one I did not ever expect to find was a hero. I do not think that is a word that Wendy would use to describe herself. But, she fits it perfectly. Wendy has been diagnosed with early onset Alzheimer’s. And this is her story.

Wendy says she is not somebody suffering with dementia she is someone LIVING with dementia . But I believe that she is not only knocking down barriers for herself but, for all people with dementia. I cannot envision anyone reading this book not being filled with amazement,inspiration,and gratefulness for how Wendy has chosen to live her life. She gives of herself unselfishly to educate doctors, nurses,administrators, caregivers, clinical researchers, and the everyday public while battling her own disease and learning new avenues to live the life before her.

I encourage you to read her story. Sit at her feet and learn from what she has to share. Be touched by this remarkable woman. I cannot imagine you will look at a person with dementia with the same eyes that you did before you opened her book.

And when we find breakthroughs in treatment for this disease, I would not be surprised to find that somewhere, somehow Wendy would have had a hand in that too. Because where Wendy goes, she leaves seeds of hope behind her.

[Laura · Rating 5 out of 5]

An altogether inspirational read chronicling one woman’s journey as she is diagnosed with early onset dementia in her fifties. With a hefty dose of black humour and endless cups of tea, the author is unrelenting on her positive attitude towards living with - not suffering of - her progressive brain disease.

Having worked in dementia care as a care worker then as a nurse for over a decade I have most definitely learnt something new from reading this book. I considered how sensory issues affect dementia, something I must admit I have neglected to realise in the past. The author has used her illness to change the future of dementia care, and for that she can only be applauded. She has volunteered for drug trials, spoken to conferences of professionals and students, served as an ambassador for various charities and so much more.

As well as the more notable achievements, the author shows various examples of day to day life with dementia as her ever present companion. The way she describes the disorientation and memory loss is remarkable. As a book lover and a nurse, this was a privilege to read.

[Adele Shea · Rating 5 out of 5]

Just finished Wendy Mitchell's book Somebody I Used To Know. What an amazingly strong woman she is. To suffer from Dementia but set about to bring awareness in the way she has is just inspiring.
I'll be honest, I've been lucky to never have come across the disease but this book has really opened my eyes.
Get this on your Must Read list.

[Mery_B · Rating 4 out of 5]

Cuando encuentro un modo de pensar o de actuar alternativo, o una estrategia para sortear esta enfermedad que se ha apoderado de mi cerebro, percibo menos la sensación de que el mundo va cerrándose en torno a mí y, en su lugar, veo que se abren nuevas oportunidades, que hay modos de convivir con la demencia y que, lejos de ser un punto final, el principio del fin, puede ser solo una coma.

[Imi · Rating 4 out of 5]

People have looked at my blog and questioned how I can possibly have dementia. They wonder how someone with a diseased brain can possibly write so fluently. I’m thankful that part of my brain isn’t broken, that while words lose themselves on their way out of my mouth, the written ones make it on to the page before it’s too late. It’s sad when the things you continue to do make people question whether you have dementia. They’re not inside my brain to hear or see the hallucinations. Would it make them feel better to see me on a foggy day, the type where I curl up under my duvet and hide away from the world? Would that make the disease fit better into the pigeonhole they’ve allocated it?

So many times reading this wonderful memoir, I wanted to give Wendy Mitchell a standing ovation for continuing to find ways to live well and happily, despite the system, her employers, and people around her doubting her. Really many gave up on her when she was only in the very early stages of early-onset dementia. The assumptions that her life is done, finished, do more harm than good. Wendy is down-to-earth, inventive and resourceful in how she copes. Now, do I think everyone can have such a positive attitude? Perhaps not, many wouldn't have the opportunity, but it's wonderful to see how Wendy again and again turns expectations on their head. Everyone should read this memoir; it teaches you not only about the experiences of someone living with dementia, but also how our important language is when talking to (or about) someone with a disability or illness. This book was also really well structured and put together, with the help of a ghostwriter Anna Wharton, and that makes it a very easy and enjoyable read. I will be recommending it to many and I wish Wendy all the best in her quest to make the most out of life. Fantastic!

[Pauline Reid · Rating 5 out of 5]

What happens when you lose your memory? What happens when sometimes you don't even remember which is your house when walking home? What happens when you can't remember when you last ate?

At the age of 58, author Wendy Mitchell was diagnosed with Alzheimer's/dementia, she painfully describes how and walks us through the strategies she puts in place for remembering.... but not on just remembering, but strategies put in place to help her to stay independent. Determination is the key word I thought of when listening to this audio book, just share determination, that she wasn't going to rely on her two daughters and also her end of the tunnel vision of keeping out of the nursing home .... no, she didn't want to go there at all.

You know what is so special about Wendy Mitchell? It is that she was at a stage in her dementia where she could rationalise and recognise and problem solve bumps in the road that she could soothe out before they grew into a mountain that she couldn't climb. Yes, sometimes she had to stop and shelter in a cave until she got her bearings again, but this is what is so remarkable about this woman, she kept on going. Staying positive, looking at life like a clean beach with no chaos, well there was chaos, her mind did flip, but she seemed to just have that knowledge to recover and calm her nerves.
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So I picked this book mainly because my Mum suffers from Alzheimer's, too late for her I'm afraid at 94 to recalibrate, but it certainly was an insight of what she must be going through.
(I hope Alzheimer's is not hereditary 🙄).
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Listened to as an audiobook, supporting my local library through bolinda borrow box (no charge).
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⭐⭐⭐⭐⭐ 5 star rating.
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Recommendation - Autobiography/Memoirs - Alzheimers/Dementia

[Wendy Greenberg · Rating 3 out of 5]

A patchwork of bleak and hopeful episodes stitch together this memoir. I found it provided a well crafted behind the eyes look at dementia as well as the memoir (and eclipse) of a practical woman railing against perceptions. Wendy's former self "speaks" through the progress of the disease.

The author invests her time in educating others expectations of the disease reminding us that there is an early stage. Her can-do attitude is inspirational but we learn her way of being as independent and pro-active as possible is rooted in knowing the brutal realities. The book is her preparation for the siege of dementia towards which she inevitably moves.

[Sharon · Rating 5 out of 5]

Audio. A memoir of living with dementia. Thank you to the author for sharing her story, and continuing to try and help people understand

[Alexandra · Rating 5 out of 5]

I listened to an abridged version of this book sometime ago on radio 4's book at bedtime and it fascinated me. I worked in care for many years particularly with elderly dementia. I found the job extremely rewarding, frustrating and dad but also filled with much humour. When this book popped up on my borrowbox suggestions from my local library I immediately downloaded it. It has to be one of the best books I have ever read! It is extremely honest, harrowing, uplifting and frustrating stories told from the view of a lady living with actual dementia - not only that but young onset. It really.opened my eyes.to how dementia takes hold of someone and what actually needs to be done to help them live their lives. I was extremely angered by her treatment from the nhs both medically and professionally by those she worked for. It really made me think twice about the preconceived ideas I had as a carer of those in the last stages of the disease, although it Also made me feel good about what I did in my job as it seems that I at least got some of it right! Everyone should read this book to give a much better understanding of a disease that the majority of us really have no comprehension of. I am in awe of this woman for her tenacity and determination in the face of such a.cruel disease. Thank you Wendy, this book has gone straight into my top ten. I will go back to it often and tell everyone I know and plenty I don't to do the same. An absolutely riveting read that is highly highly recommended.

[Stephen · Rating 4 out of 5]

Very interesting book with the authors journey with early set dementia and very informative

[Suzanne Kentish · Rating 4 out of 5]

Heartbreaking and heartwarming, with strong positive messages in this beautifully written memoir by Wendy. Diagnosed aged 58, with early-onset Alzheimer's whilst working, I think means her outlook on "living with" dementia is positive and organised. Wendy lives on her own (children have left home) which means she comes up with inventive ways to cope and creates strategies to remember schedules, meetings, locations and even to eat! Opened my eyes on this sometimes hidden issue.

[Mary Arkless · Rating 5 out of 5]

I first heard of Wendy Mitchell when she appeared on BBC Radio Two's Jeremy Vine show. She had come to talk about her book and living with dementia. In 2014 at the age of 58, Mitchell was diagnosed with early onset dementia. Shortly after, I saw her book in Costco, so I bought it. I dipped into it right away, but until recently, it was a book I dipped into when I had a few spare moments in my bedroom (where I kept the book). Upon finishing the last book I read, I decided it was time to finish this one.

Mitchell begins talking about running. She loved to run, and was running when inexplicably, she fell. Battered and bruised, she looked around, and saw nothing to have tripped on. This happened sometime later, and again, there was nothing there. Eventually, she decided to put her running shoes to the back of her cupboard. Other things started to happened, and eventually, she went for tests. She suspected the diagnosis when it came: dementia. The doctor simply in a sad tone gave her the diagnosis, declared there was nothing to be done, and basically dismissed Mitchell. Seems rather cruel, doesn't it?

Mitchell tells of her journey through a progressive disease which slowly takes so much away from her. Yet, she tries to find ways around what is missing. She keeps herself active to fight dementia at every step, hoping to slow its progress by doing so. Her shining beacon is her two daughters. Her love for them influences what she does and how she does it.

She is obviously a compassionate person, used to thinking outside the box. She tries to empower and console others with dementia. Most others living with the illness have a partner, spouse, or carer, which Mitchell does not. Very often, the partner or spouse takes over, does things for the person, becomes their mouthpiece, assuming control. Mitchell wonders if for those people, dementia moves faster, as they are not allowed to exercise their abilities and minds. For her, it is very important that people ask HER about how she is or what she wants, instead of speaking to her daughters, especially if she is right there in front of those people.

She also explains how our choice of words can affect the person living with dementia. She insists that she doesn't suffer from dementia. She lives with it, for example. I can understand what she means. I am a cancer survivor, and those memes that go around about feeling so terribly sorry for those afflicted with cancer really get up my nose. Yes, I had a horrible disease. No, I don't need pity.

There is much wisdom in this book, and much to ponder. Wendy Mitchell is an incredibly brave fighter.

[JoJo · Rating 5 out of 5]

I don't often give the 5 stars, but this true story of how dementia impacts a life and what can be done to minimise the disruption is amazing. Sad as it is it gives hope for those that are travelling down this path that it isn't all back, and for those of us who hopefully are not going that way but may well encounters others less fortunate it gives us an insight it what is a truly frightening and confusing illness. Bravo for having the ability and the desire to write this book - I am in awe of you