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review 2017-10-10 15:14
An emotional journey into a disintegrating mind and its effects
Disease: When Life takes an Unexpected Turn - Hans M. Hirschi

I have read quite a few books by Hans Hirschi (not all, but I might get there given time) and have enjoyed them, no matter what the genre. The author is not somebody who writes thinking about the market or the latest trend. He writes stories he cares about, and beyond interesting plots and fully-fledged characters, he always pushes us to think about some of the big questions: prejudice, ecology, poverty, child abuse, families, laws, gender, identity… If all of his stories are personal, however fictional, this novel is perhaps even more personal than the rest.

As a psychiatrist, I’ve diagnosed patients with dementia (Alzheimer’s disease or other types), I’ve assessed and looked after patients with dementia in hospital, and I have seen, second-hand, what the illness does to the relatives and friends, and also to the patients, but as an observer, from outside. I’ve known some people who have suffered from the condition but not close enough to be able to give a personal account.

The novel tries to do something quite difficult: to give us the insight into what somebody suffering from Alzheimer’s feels, what they think, and how they experience the process of losing their own memories and themselves. The book is written in a diary format, in the first person, by Hunter, a man in his forties who, after some episodes of forgetfulness, goes to the doctors and is diagnosed with early Alzheimer’s. He writes articles for a living, is married to Ethan, who is a high-school teacher, and they have a five-year-old daughter, Amy (born of a surrogate mother, and Ethan’s biological daughter). They live in Michigan, where they moved to from California, and therefore they are not legally married, as that was not an option at the time. To the worry of his illness and how this will affect him (Hunter’s mother also died of the condition, so he is fully aware of its effects on its sufferers), are added the worries about practicalities, about Amy’s care, about financial stability, about his own care, as they are not a couple with equal rights in the eyes of the law.

Hunter’s diary is framed by Ethan’s narration. Ethan finds the file of the diary a couple of years after Hunter’s passing and decides to publish it, mostly letting Hunter’s words speak for themselves, but at times he clarifies if something Hunter narrates truly happened or not, or gives us his own version of events (for instance, when Hunter gets lost). Although the story is mostly written by Hunter and told from the point of view of the sufferer, Ethan’s brief contributions are poignant and heart-wrenching, precisely because we do get the sense that he is trying so hard to be strong, fair, and to focus on his daughter. He accepts things as they are and is not bitter, but the heavy toll the illness has taken is clear.

The novel ends with a letter written by Amy. Although brief, we get another perspective on how the illness affects families, and through her eyes we get to know more about how Ethan is truly feeling. A deeply moving letter that rings true.

The characters are well drawn, and even when the progression of the illness means that some of the episodes Hunter describes might not be true, they still give us a good insight into his thoughts, his illusions, and his worries. He writes compellingly and beautifully (although there are is evidence of paranoia, ramblings, and some disconnected writing towards the end), and the fact that his writing remains articulate (although the gaps between entries increase as the book progresses and he even stops writing when he misplaces the file) fit in with research about preservation of those skills we have used the most and are more ingrained. Hunter pours into his diary his thoughts and experiences, some that he has never shared in detail with anybody (like being trapped at a hotel in Mumbai during a terrorist attack), and others that seem to be flights of fancy or wishful thinking. He shares his own opinions (his dislike of nursing homes, his horror at the thought of being looked after by somebody he doesn’t know, his worries about the future, his memories of the past…) and is at times humorous, at times nasty, at others indignant and righteous. He is not a cardboard cut-out, and neither are any of the other characters.

Apart from the personal story of the characters, we have intrusions of the real world, including news, court decisions, that ground the events in the here and now, however universal they might be, but wherever you live and whoever you are, it is impossible not to put yourself in the place of the characters and wonder what you would do, and how much more difficult things are for them because they are not a “normal” family.

This is an extraordinary book, a book that made me think about patients I had known with similar diagnosis, about the difficulties they and their families face (there are not that many nursing homes that accommodate early dementia, and most of those for elderly patients are not suited to the needs of younger patients), about end of life care, and about what I would do faced with a similar situation. The book does not shy away from asking the difficult questions, and although it is impossible to read it and not feel emotional, it tells the story with the same dignity it affords its main character.

Although there is a certain degree of intrigue from the beginning (we do not find the exact circumstances of Hunter’s death until very close to the end) that will, perhaps, contribute to reading it even faster, this book is for readers who are interested in dementia and Alzheimer’s (although it is not an easy read), who love well-drawn characters, deep psychological portrayals, and stories about families and their ties. A great and important book I thoroughly recommend and another first-rate addition to Mr. Hirschi’s oeuvre.

I received an ARC copy of this book and I freely decided to review it. Thanks to the author and the publisher for this opportunity.

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review 2016-05-07 22:34
The Dementia of Language - Sara Toruno-Conley

My favorite poems are the ones that work together to create a story and that is just what this collection does.

Each poem is beautiful and haunting in itself, but together they make up a story of a mother's dementia. The poems are told from three different perspectives, the daughter, the father, and the mother herself, and demonstrate some of the struggles that each of the members of the family face.

This is a quick read, but one that is achingly beautiful, full of sorrow, and delves into the depths of human connections.

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review 2016-01-21 19:34
The Dementia Diaries- my highest recommendation!
The Dementia Diaries: A Novel in Cartoons - Social Innovation Lab Kent,Matthew Snyman,Angela Rippon

I am so glad I read this. It is written in Diary/Journal entries from different a few children/teenagers and bounces between each of their perspectives. There are drawings added that really helped to add to each of the enteries.

 

Some of the topics will make you laugh, cry, and really think about what it is like to live in close proximity to someone with dementia. In no way is it easy. I loved how each of these children were able to look past the bad and try to remember "good" times. 

 

This is split into sections and at the end of these sections is an activities section with suggestions that are intended to educate and help cope. Some of these ideas are very good and will help give a child the feeling of being involved and hopefully make it easier for them accept their situation. 

 

I really feel that this would help any child in a situation where Dementia has made an impact on their life. It also may help an older person (parent, grandparent, etc) understand how it effects a child, and how a child views what Dementia is. I give this my highest recommendation.

 

Something that made me laugh:

 

 

A YouTube video (Making The Dimentia Diaries):

 

https://m.youtube.com/watch?v=sYYVSRCWKAA

 

I recieved an e-copy of this book through Edelwiess in exchange for an honest review. 

 

 

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text 2016-01-21 14:40
Reading progress update: I've read 15%.
The Dementia Diaries: A Novel in Cartoons - Social Innovation Lab Kent,Matthew Snyman,Angela Rippon

 

I love the idea of this being written from the point of view of teenagers and children. I can only imagine how scary and life altering it would be to deal with living with a loved one with dementia. Hopefully this book will reach the hands of other's going through similar situations and help them to get through what they are experiencing.

 

Dementia sucks! I am dealing with a lot of it with my clients at work. The company was formed by a group of families with children with developmental disabilities. They didn't want their kids to be in an institution, which was really the only option during that time period. This group of children are now older. We have quite a few clients with Downs Syndrome. People with Downs almost always get dementia when they get older. 

 

We are also seeing a trend, I don't know if this is just in our agency, or if it is also true for other settings, where younger clients are also suffering from Dementia like symptoms. 

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text 2016-01-08 15:49
Reading progress update: I've read 13%.
The Dementia Diaries: A Novel in Cartoons - Social Innovation Lab Kent,Matthew Snyman,Angela Rippon

...It’s a diary, it’s my diary , and it’s my friends’ diaries.

 

We’ve stuck them all together into a sort of super-diary about Dementia. And it’s about our Grandparents. It’s about their Dementia . That’s what we want to share. And don’t worry, some of the stories are even pretty funny!

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