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The Last Ocean: A Journey through Memory and Forgetting

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Diagnosed with dementia, Nicci Gerrard's father John continued to live life on his own terms, alongside the disease. But when an isolating hospital stay precipitated a dramatic turn for the worse, Gerrard ... recognized that it was not just the disease, but misguided protocol and harmful practice that cause pain at the end of life. Inspired by his memory to seek a better c Diagnosed with dementia, Nicci Gerrard's father John continued to live life on his own terms, alongside the disease. But when an isolating hospital stay precipitated a dramatic turn for the worse, Gerrard ... recognized that it was not just the disease, but misguided protocol and harmful practice that cause pain at the end of life. Inspired by his memory to seek a better course for all who suffer with the disease and those who love them, Gerrard became a relentless campaigner.


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Diagnosed with dementia, Nicci Gerrard's father John continued to live life on his own terms, alongside the disease. But when an isolating hospital stay precipitated a dramatic turn for the worse, Gerrard ... recognized that it was not just the disease, but misguided protocol and harmful practice that cause pain at the end of life. Inspired by his memory to seek a better c Diagnosed with dementia, Nicci Gerrard's father John continued to live life on his own terms, alongside the disease. But when an isolating hospital stay precipitated a dramatic turn for the worse, Gerrard ... recognized that it was not just the disease, but misguided protocol and harmful practice that cause pain at the end of life. Inspired by his memory to seek a better course for all who suffer with the disease and those who love them, Gerrard became a relentless campaigner.

30 review for The Last Ocean: A Journey through Memory and Forgetting

  1. 5 out of 5

    Canadian Reader

    Nicci Gerrard’s book about Alzheimer’s Disease is a combination of memoir and journalism. She tells about the last years of her father’s life, beautifully capturing him as a person both before and after Alzheimer’s struck. Gerrard manages to do what psychiatrist Arthur Kleinman tried (unsuccessfully) to accomplish in his recent book The Soul of Care: provide a sense of the personhood of a loved one stricken with a condition that seeks to erase the self. (In Kleinman’s case, it was his wife, Joan Nicci Gerrard’s book about Alzheimer’s Disease is a combination of memoir and journalism. She tells about the last years of her father’s life, beautifully capturing him as a person both before and after Alzheimer’s struck. Gerrard manages to do what psychiatrist Arthur Kleinman tried (unsuccessfully) to accomplish in his recent book The Soul of Care: provide a sense of the personhood of a loved one stricken with a condition that seeks to erase the self. (In Kleinman’s case, it was his wife, Joan.) Gerrard has also done considerable research, speaking with experts in the field (both academic and frontline clinicians), Alzheimer’s patients, and care givers. Her findings are rich and informative. She discusses the biological aspects of the disease, noting that while imaging and post-mortem studies of brain tissue often reveal obvious abnormalities in the appearance of cells and structures, these do not always correspond with the way patients may have presented clinically. A dissected brain may look very abnormal, yet in life the patient may have shown no signs of cognitive impairment. Conversely, brain slices from a patient who had been diagnosed with the disease may show no visible markers of dementia. What appears to be true, however, is that the characteristic amyloid plaques that are considered the hallmark of Alzheimer’s Disease may be the “ashes” after the damaging “fire”, rather than the cause of the impairment. Gerrard notes that while we generally think of dementia as a disease that impairs memory, there are actually multiple indicators—a “bewildering number of cognitive impairments” that, according to one book, may number as high as 256. There are also multiple varieties of the disease itself. While Alzheimer’s, the most common form (accounting for one half of all dementia cases), typically presents with the loss of episodic memory (long-term memory of personal experience), there is a form of Alzheimer’s in which memory is preserved but visual processing is damaged: colours can extend beyond boundaries, objects can appear upside down or on a tilt, and the sufferer may have difficulty locating a door. According to Gerrard, if we now seem to be in an Alzheimer’s epidemic, this is because the disease has come out of hiding. The statistics she cites give one pause. In 2015, an estimated 850,000 people in the UK were living with dementia, but it is believed that an equal number were undiagnosed. The number (in the UK) is expected to rise to over one million by 2021. According to the World Health Organization, an estimated 47 million worldwide have the disease; 5.5 million of them are in the US. Familiar with these numbers as Gerrard is, it is no wonder that she feels a sense of urgency about the need for society to address the many issues around humane and respectful care of the afflicted. (She and a friend began a campaign, named after her father, to push for this.) Our awareness, she says, brings social, political, and moral responsibility. Gerrard doesn’t just write about dementia; she also illuminates a number of other related subjects: aging, including a sense of the normal cognitive changes experienced as we get older; advance directives; assisted dying; care giving; old age “homes” which almost never feel like “home”—because they are not physical extensions of the self in the way a real home is; death; grief; and the ways in which we later take our departed loved ones into our own psyches. I found one of her remarks about aging particularly striking: “We identify ourselves as young, because in one sense we still are. The older, current self is a newcomer, still something of a stranger, who we have to live with but who we don’t feel entirely comfortable with and may sometimes be distressed by.” Like consultant neurologist Jules Montague, author of Lost and Found: Why Losing Our Memories Doesn’t Mean Losing Ourselves, Gerrard is interested in the question of personal identity in individuals who lose the narrative of their lives, the sense of the continuity of themselves and their stories over time: “I used to say that we are made of our memories, but what happens when our memories are lost? Who are we then? If we are out of our mind, where have we gone? If we have lost the plot, what happens to the story we are in?” Gerrard’s book echoes a point that Dr. Montague makes about how alterations in moral capacity in patients with neurological disease can affect the way those patients are perceived by family members. If they remain kind and cooperative, patients are likely to be viewed as “essentially themselves” by those close to them. When Gerrard asked neurologist Dr. Martin Rossor, the National Director for Dementia Research at the National Institute for Health Research, if he believed that a self is ever wholly lost to the disease, his judgement was similar to that of Jules Montague. Perhaps a self is lost, he said, “when all empathy goes”. Another of the author’s interests is the way in which the arts may be used to aid those with dementia. Since she is a patron of the Creative Dementia Arts Network, it is not surprising that Gerrard should devote some of the pages of her book to visual-arts and music programs that seem to be helping patients stay connected to the external world. She also highlights the work of painter William Utermohlen, whose self-portraits, completed as his disease claimed him, provide viewers with a window into the interior experience of the condition. Some of these paintings can be seen online. I am providing one link here that highlights the progression of his illness through his art. Utermohlen’s work shows us that not only is memory erased in Alzheimer’s, but a person’s spatial sense and perceptual capacities can be eroded as well: https://www.boredpanda.com/alzheimers... The Last Ocean is a valuable work, which addresses some matters I haven’t seen discussed elsewhere. It is an honest and affecting piece. I do have a couple of relatively minor reservations about the book, however. At one point, Gerrard comments that animals “perish”, while humans “die”. I’m not sure I understand her distinction. If anything, our mortality links us with the other animals on earth. It seems to me Gerrard is insinuating that the death of nonhuman animals is a lesser thing than the death of humans—perhaps because animals lack the mental faculties, self awareness, consciousness, and sophisticated culture of humans. Having been with my own companion animals as their lives drew to a close, I believe that animals can certainly be aware that they are dying, and sometimes humans would be wise to take instruction from them. My second reservation about the book relates to some of Gerrard’s writing, especially towards the end: it is occasionally too self-consciously literary. Overly lyrical phrasing sometimes draws too much attention to itself and distracts from the content.

  2. 5 out of 5

    Mary

    My dear mother is beginning to fade. This wonderful book feels as if someone is holding my hand, helping me to help her as her light dims. I know I’ll be dipping into its pages for nourishment as the process of saying goodbye begins. Thank you ever so much Nicci Gerard.

  3. 5 out of 5

    Avid

    4.5 stars. A very compassionate look at dementia and death with an emphasis on caregivers and loved ones.

  4. 4 out of 5

    Janet

    while the first chapter seemed a bit meander-y, once her narrative begins, Gerrard articulates the multiple perspectives, dilemmas and challenges we face as carers, patients, families, communities in trying to understand and support people with dementias. at times absolutely gutting, other times a bit dispassionate, but always with respect for the multilayered and differently experienced and understood lives affected by that awful thief and pillager

  5. 5 out of 5

    Abby Cain

    Warmth for those who know the pain of dementia.

  6. 5 out of 5

    Mandy

    ”People talk of dementia as if it were a time bomb. In truth, the bomb went off long ago, but quietly, privately, out of sight: a hidden demolition job. Men and women who live with dementia are often missing people - forgotten and denied by a society that values independence, prosperity, youth and success and turns away from vulnerability. They are the reminders that we get old, we decay; death comes to us all in the end. Of all the illnesses, it is the one we now most fear. It is ‘the story of ”People talk of dementia as if it were a time bomb. In truth, the bomb went off long ago, but quietly, privately, out of sight: a hidden demolition job. Men and women who live with dementia are often missing people - forgotten and denied by a society that values independence, prosperity, youth and success and turns away from vulnerability. They are the reminders that we get old, we decay; death comes to us all in the end. Of all the illnesses, it is the one we now most fear. It is ‘the story of suffering ‘ - and like suffering, it lasts.” I love when books challenge me...force me to open my eyes to things I’d rather not. Or when they push me to shift my perspective and the way I think about things. The Last Ocean did all of that. Nicci Gerrard takes us through what dementia does to both the person living with it and the caregivers. She talks about what her father went through (and her family), but also other people living with this diagnosis. It’s raw, real, helpful, and heartbreaking. Dementia has a deep, tremendous impact on not only the individual, but also on those who care for them. I checked this book out from the library because I know (family and friends) who are living with dementia and I wanted to gain a better insight into the disease. Gerrard writes from an obvious place of experience and passion - I found the mix of her own personal experience with her father and those she interviewed to be incredibly helpful. It made me realize just how lonely and confusing it must be for the individual and the toll it takes on the caregivers. Her writing is beautiful and poetic - had it not been a library book, I would have highlighted and/dog-eared several excerpts and pages. I had no idea just how prevalent dementia is and to know that ”someone develops dementia every three seconds” is incredibly scary. This book is powerful and I appreciate how Gerrard forces you to face that fear and leave with better insight and empathy.

  7. 5 out of 5

    Bruin Mccon

    The Last Ocean is a lyrical story of dementia, coupled with a finale on grief. Written by Nicci Gerrard (one half of the fiction duo Nicci French), this non-fiction masterpiece tells the story of her non-profit, dedicated to improving the lives of those living with dementia. It’s also a beautiful tribute to her late father.

  8. 4 out of 5

    Alison Williamson

    A "must-read" for anyone caring for someone with dementia. Beautifully written, sets out case studies in an accessible way. I thoroughly recommend it to anyone who wants to know about dementia A "must-read" for anyone caring for someone with dementia. Beautifully written, sets out case studies in an accessible way. I thoroughly recommend it to anyone who wants to know about dementia

  9. 5 out of 5

    Xiaoning

    Didn't finish. I was expecting a book about dementia, with a mix of medical knowledge and personal perspectives. However, the author keeps talking about how miserable old ages can be and brought nothing specific related to dementia. I lost my focus and interest in it. Didn't finish. I was expecting a book about dementia, with a mix of medical knowledge and personal perspectives. However, the author keeps talking about how miserable old ages can be and brought nothing specific related to dementia. I lost my focus and interest in it.

  10. 4 out of 5

    Priscilla Snelling

    This book is so moving, deals with dementia with love and understanding. I was in tears many times. A must for anyone, really all of us to help us understand in some small way all of our humanity

  11. 4 out of 5

    Tina Manatos

    A painful, humane, enlightening, heartbreaking, and loving look at dementia and those who are caregivers. Our society needs to do more. Essential reading for for anyone touched by this disease.

  12. 4 out of 5

    Nancy

    This book basically says that watching someone be swallowed by dementia and caring for that person is pretty miserable. I knew that so I guess this was not the book for me. Maybe I have read too many books on aging since I realized that my mother's memory was failing. She has since died. Now my father is living in a memory care unit. Am I next? This book basically says that watching someone be swallowed by dementia and caring for that person is pretty miserable. I knew that so I guess this was not the book for me. Maybe I have read too many books on aging since I realized that my mother's memory was failing. She has since died. Now my father is living in a memory care unit. Am I next?

  13. 4 out of 5

    Cheryl Gatling

    This book about dementia is hard to categorize, as it is “about" dementia but it contains few conclusions, and fewer instructions. The subtitle calls it “a journey.” I might call it “an exploration of” or “a meditation on” the subject of dementia. The author begins with the story of her father, whom she watched decline, and all the poignant and painful memories that caused. She visits medical experts. She visits hospitals and nursing homes, some enlightened, and some less so. She interviews many This book about dementia is hard to categorize, as it is “about" dementia but it contains few conclusions, and fewer instructions. The subtitle calls it “a journey.” I might call it “an exploration of” or “a meditation on” the subject of dementia. The author begins with the story of her father, whom she watched decline, and all the poignant and painful memories that caused. She visits medical experts. She visits hospitals and nursing homes, some enlightened, and some less so. She interviews many people with dementia, and their caregivers, and lets them tell their stories. And all along the way she asks questions. What does it mean to be a self? If we lose our memory, are we still the same self? If a person is changed from the person we used to know, who are they? And what should we do about it? What is the most successful and most compassionate means of care? She visits a brain scientist who places a real human brain in her hands, and slices it open for her. She briefly talks about some of the different types of dementia, and the different ways they affect a person. She talks about the possibility of choosing assisted suicide, and about discussing future plans with one’s family. She says there is a brief window when a person with dementia can make that decision, once they have received their diagnosis, but before the disease has advanced. Once a person has lost the ability to reason, it is too late. She tries to imagine what it is like to be inside the mind of a person with dementia. She says they often feel shame. As they lose their inhibitions they fear they will be exposed as naked (sometimes literally) or foolish. They often long for a home that can’t be reached, as what they want is the security of childhood. They may experience anxiety or terror as their familiar world becomes unstable. Eventually they will lose language, and with it the ability to communicate, to even think. Who then are they? She promotes the arts for people with dementia, because often those who can’t be reached through words will respond to music, or dancing, or poetry. She promotes the right of caregivers to stay with patients in the hospital, because the disruption caused by the strange environment can cause a person with dementia to mentally decline, and perhaps never recover what they lose. She has concern for the caregivers, the spouses and the children of people with dementia, who often sacrifice years of their lives helping a person, and even if they can’t imagine not doing it, they will at times be fatigued, and resentful, and lonely. What sticks, at the end of the book, are the stories. The author begins with a memory of her father, already having begun his dementia journey, swimming in a lake, swimming in circles, and singing to himself. He appeared happy, but also to be alone in a world of his own. Toward the end of her father’s story, she recalls how he had lost the ability to speak, but when the family recited John Masefield’s poem “Sea Fever,” he joined in. She tells about the painter William Utermohlen, who painted a series of self portraits as his dementia progressed. You can see how a realistic face becomes a disordered mess. (There are no photos in the book, but you can Google them.) She told about a married couple where the husband had cheated on the wife early in their marriage (and then she cheated on him). Now in old age, she could not remember events, but she remembered the anger she felt, and she kept beating him up, while he became too weakened by cancer to defend himself, and they had to be separated. And there are many more stories. I have said that the author draws few conclusions, but there are at least two. One is that what makes us human is being social beings in a social network, so what helps people with dementia is connection, connection, connection. Being talked to, not about. Being touched. Sharing music. Whatever works to keep the bonds going. And the other is probably the overarching theme of the book. We only care about what we are aware of. She begins by saying that there is a prison near her house, and prostitutes working in a nearby neighborhood. But she never saw these people, and so never gave a thought to their possible sufferings. For many years, dementia has also been hidden away. This whole book is a way of shining a light on the subject, and on the people, so we can see, so we can care. So we can be kind, be kind, be kind.

  14. 4 out of 5

    Jose Rodriguez

    The author’s father suffered from dementia the last years of his life. She embarked on a long research project about all aspects of the illness, visiting institutions, talking to experts, caregivers, and people in the early stages. She has also successfully started a campaign in the U.K. to allow loved ones and caregivers to be able to stay with the sufferer if they happen to be in the hospital for whatever reason. She experienced a very rapid decline in her father after he was alone in the hosp The author’s father suffered from dementia the last years of his life. She embarked on a long research project about all aspects of the illness, visiting institutions, talking to experts, caregivers, and people in the early stages. She has also successfully started a campaign in the U.K. to allow loved ones and caregivers to be able to stay with the sufferer if they happen to be in the hospital for whatever reason. She experienced a very rapid decline in her father after he was alone in the hospital for days due to a virus outbreak in the hospital which temporarily stopped visits. And it is true, a sudden change of living conditions can push a person into a fast downward slope. I experienced this with my mother. There are great pages in this book, both describing different ways to remain engaged with the sufferer, and exploring dying and grieving. The large number of people interviewed give different perspectives and histories, while at the same time realizing underlying similarities. The above said, I had trouble with the book in general. I found it repetitious; ideas and situations keep reappearing. It’s beautifully written, but extremely wordy - I happen to much prefer the contained paragraph rich in meaning than an avalanche of similes three times as long. And all the stories are about extremely accomplished persons and families: artists, composers, doctors, academics...There are few tragedies in the lives prior to the onset of dementia. This highlights the pain of losing all this. Personally, I couldn’t connect my experience with this. My mother was not particularly accomplished (except in being a mother), her Alzheimer’s was the last of many tragedies in her life. Of course, I feel that her life was rich in her own way, and her illness and our dealing with it is still very similar to the ones described in this book. I just wish that the sample of people would have been more diverse. But maybe that would have required a mammoth undertaking, well beyond the parameters of this book.

  15. 5 out of 5

    Jiawei Wang

    It's a sad, depressing book, which makes it so hard to read. It's about patients with dementia, the decline in their memory, and the weight on them and the people who are taking care of them. But it is also an inspiring book, at least for me, because it gives me a precaution of what things will become after getting the disease. Considering the disease I'm suffering now, the medicines I'm taking which may affect my brain, and the sleeping issue I always have, I can imagine that I will be very vul It's a sad, depressing book, which makes it so hard to read. It's about patients with dementia, the decline in their memory, and the weight on them and the people who are taking care of them. But it is also an inspiring book, at least for me, because it gives me a precaution of what things will become after getting the disease. Considering the disease I'm suffering now, the medicines I'm taking which may affect my brain, and the sleeping issue I always have, I can imagine that I will be very vulnerable to dementia after certain age. And I always feel horrified and depressed with thinking about this, while I just can't help thinking. I'm not saying that I feel even more horrified and depressed after reading this book. Instead, I have a clearer view of my probable future, which at least reduces my thinking a little bit. On the other hand, I just feel it not bad to know our "future" earlier. It's right that some of us may not get this disease, but we will lose our memories and intelligences. We will have similar "symptoms" just because of aging. Nicci Gerrard gives a deeper thinking of memory loss, and the meaning of life with it. And yes, it is sad and depressing if you focus on those cases, those lives with dementia. But it is not so sad if you focus on the thinking of life.

  16. 5 out of 5

    Julie

    I did not enjoy this book but will read it again. I took my time trying to learn and understand. I cried, my heart broke, I cried some more. I wish I had read this at the beginning signs of my Mother’s ‘quirks’ and signs that we unfortunately discounted. These two thoughts continue to haunt me. “It has become easier to live longer but harder to die well.” “Life without memory is no life at all.” The following chapters each provided incredible insight to the various stages of dementia/Alzheimer’s. S I did not enjoy this book but will read it again. I took my time trying to learn and understand. I cried, my heart broke, I cried some more. I wish I had read this at the beginning signs of my Mother’s ‘quirks’ and signs that we unfortunately discounted. These two thoughts continue to haunt me. “It has become easier to live longer but harder to die well.” “Life without memory is no life at all.” The following chapters each provided incredible insight to the various stages of dementia/Alzheimer’s. Still absorbing and processing. Will revise after revisiting. 1) Facing Up 2) Getting Older 3) The Brain, the Mind, and the Self 4) Memory and Forgetting 5) The Diagnosis 6) Shame 7) The Carers 8) Connecting through the Arts 9) Home 10) The Later Stages 12) At the End 13) Saying Goodbye 14) Death 15) Beginnings Again

  17. 4 out of 5

    Mbhatia

    Following a recommendation from a class called Memory Matters, I chose to read this book, written by a British author, that deals with memory loss from simple forgetting thru saying goodbye. The reason that I mention that the author is British is that some things she mentions are particular to the British system. While I found the first few chapters mundane, I felt the book more piqued my interest midway in the chapter entitled "The Carers." For every couple, one of us is likely to some day beco Following a recommendation from a class called Memory Matters, I chose to read this book, written by a British author, that deals with memory loss from simple forgetting thru saying goodbye. The reason that I mention that the author is British is that some things she mentions are particular to the British system. While I found the first few chapters mundane, I felt the book more piqued my interest midway in the chapter entitled "The Carers." For every couple, one of us is likely to some day become a "caregiver" for the other and the author describes the role well.

  18. 5 out of 5

    Mel Luna

    Yes, this book is about dementia which is an epidemic affecting tens of millions of people. But it's not depressing. It's insightful, personal, poetic, visionary and helpful, very helpful. She weaves her experience and exploration of this dreaded disease into the larger themes of humanity: society, shame, vulnerability, relationships with family and partners, the meaning of life and meaning in general, aging, dying and death as well as many other aspects of our shared human experience. It's very Yes, this book is about dementia which is an epidemic affecting tens of millions of people. But it's not depressing. It's insightful, personal, poetic, visionary and helpful, very helpful. She weaves her experience and exploration of this dreaded disease into the larger themes of humanity: society, shame, vulnerability, relationships with family and partners, the meaning of life and meaning in general, aging, dying and death as well as many other aspects of our shared human experience. It's very beautiful.

  19. 5 out of 5

    Kelly

    Gerrard's father died of Alzheimer complications, which led to this book, which truly is a journey through memory and forgetting. I've never experienced someone close to me having the disease, so I haven't witnessed it firsthand, but as she discusses her, it's definitely one of my vague fears around growing older. Some parts of this felt a little long, but most of it was interesting and poignant. Gerrard's father died of Alzheimer complications, which led to this book, which truly is a journey through memory and forgetting. I've never experienced someone close to me having the disease, so I haven't witnessed it firsthand, but as she discusses her, it's definitely one of my vague fears around growing older. Some parts of this felt a little long, but most of it was interesting and poignant.

  20. 5 out of 5

    Carolina

    Thank you Nicci for wonderful book full of personal insight, as well as good medical facts which take us to understand and think about dementia a different way. As a physician this book has showed me a new perspective as to how to approach and understand better my patients with dementia and their families. This book is definitely must read for all of those touched by such devastating disease.

  21. 4 out of 5

    Nancy

    It was one of the most difficult books I have ever read. I cried more times than I can count. However, it is a must read for anyone who has lost or cared for a loved one with dementia or has a family history that may lead to their own dementia. It is so insightful, poignant, informative, and loving. It talks through the stages and educates. Great book. Thank you Nicci.

  22. 4 out of 5

    Lisa

    A must-read for anyone who is managing dementia in their lives, be it themselves or as a caregiver. Descriptions can be a bit repetitive at times but I think it is the writing style of the author. Moving, educational and informative. Gerrard absolutely captures the complete journey of people living with dementia and that of those who love them.

  23. 5 out of 5

    Faye

    I cried my way through this beautiful book. As someone who has worked in caregiving to dementia patients, I deeply appreciated her multi dimensional views on this terrible disease. I would highly recommend to anyone dealing with the heartache of a parent or themselves coming to terms with memory loss.

  24. 5 out of 5

    Pam

    This is the first non-fiction book by Nicci Gerrard, co-author of the best-selling Nicci French thriller series. Her background as a journalist is apparent in her writing here, as she traces the development of her father’s dementia, interspersed with her medical and literary research on the topic. This is not an easy read, but it’s well worth the effort.

  25. 4 out of 5

    Carol Fuller

    If you're getting older and want to know more about dementia and think about end of life issues, this is a good book. I have read several other books on the topic so I found this one a little repetitive. If you're getting older and want to know more about dementia and think about end of life issues, this is a good book. I have read several other books on the topic so I found this one a little repetitive.

  26. 5 out of 5

    Lisa Miller

    Lyrical writing. Dealing with dementia and Alzheimer’s and end of life issues. She has a European’s take on assisted suicide so it can seem a bit nonchalant to an American. But good to have a different perspective.

  27. 4 out of 5

    Joan Schmitz

    Dementia, like cancer, is a disease that will impact everyone in some way. This is a must-read for us all.

  28. 4 out of 5

    Abigail Smith

    Tender, humane. An essential read.

  29. 5 out of 5

    Catherine

    I am having trouble getting through this book. I relate to it but it makes me sad. I am putting it down and will try again in the spring.

  30. 4 out of 5

    Tina

    What is it like to develop dementia? To lose your memories? So much sadness in this book, but ideas worth considering.

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