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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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url 2017-07-29 16:33
Why Do the Songs from Your Past Evoke Such Vivid Memories?

Don't forget to deregister and donate old iPods and ereaders to nursing homes, memory care centers and Music and Memory (https://musicandmemory.org ).

Source: www.psychologytoday.com/blog/the-athletes-way/201312/why-do-the-songs-your-past-evoke-such-vivid-memories
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url 2017-07-24 16:37
It's the time of year for back to school purchases of new music players and ereaders ... please don't forget to donate the old to nursing homes and Music & Memory

Hey!  Imagine having to condense your library of books into what you could take to a nursing homes (or memory care facility), having to now use large text, depending on others to transport you to and from library (if even able to do that)  ... donate those old eereaders that will borrow/return library books electronically and allow text enlargement (they should come with a menu option to reset to factory defaults or "deregister"; if trouble finding on kindles, you can also do it from manage your account screens).

 

Music players are wanted as well.  

 

Have you heard of the "Music and Memory" program?  It's based on science that proves memory of music stays active in synapses and often improves memory when stimulated (https://musicandmemory.org/about/brain-music-connection/ plus Psychology today on why music helps Alzheimer's https://www.psychologytoday.com/blog/the-athletes-way/201312/why-do-the-songs-your-past-evoke-such-vivid-memories  ).  Lots of stories and videos on their site -- Henry's story will get you every time.  Plus nursing homes (memory care) seldom are good about providing access to individualized music tastes.  They do want apple products like iPods, shuffles, nanos, and apple/iTunes gift cards.  You can also email them the egift voucher iTunes codes from coinstar machines if you're hanging on to too much change ...

 

Source: musicandmemory.org/donate-my-ipod
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review 2017-06-23 18:03
I'm conflicted
Grandpa's Great Escape - David Walliams

I am struggling with how to express my feelings about Grandpa's Great Escape by David Walliams. This is due to the fact that this man might actually be a bigger Roald Dahl fan than myself and his writing definitely reflects that. I don't think that Walliams makes any bones about this but I do think that if you've read Dahl's works it will be difficult not to compare the two which leaves Walliams falling a bit short. (Sorry!) Read on its own merit, it's a great little book which touches on topics which I think are really important in middle grade fiction. Our main character, Jack, has a very special relationship with his grandfather who was a fighter pilot in WWII. Their relationship is a unique one which is further complicated by the fact that his grandpa has Alzheimer's disease and believes he is once again in the midst of the Battle of Britain. Jack's parents are torn about what to do with the old man but Jack is adamant that he continue to spend time with him...until the vicar puts an idea into their heads about the old folks home beyond the moors. In typical Dahl fashion, Walliams fashions a slapstick comedy amidst flashbacks to WWII and serious discussions over elderly care and familial loyalty.

 

What I didn't care for:

  • What felt like blatant ripoffs of Dahl's works as well as his illustrator, Quentin Blake

 

What I legitimately enjoyed:

  • The approach and handling of serious discussions revolving around elderly care and Alzheimer's
  • The glossary at the back which discussed in more detail the topics touched on in the book such as the Royal Air Force, Battle of Britain, etc.

 

I'd love to know what you guys think so please check the book out and leave a comment below. :-)

Source: readingfortheheckofit.blogspot.com
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review 2017-04-12 11:03
A wonderful look at Alzheimer’s, with sci-fi, inspiration, genetics and metaphysics thrown in.
Pale Highway - Nicholas Conley

Thanks to the author who offered me an ARC copy of his novel that I freely chose to review.

When the author approached me about this novel, I didn’t know what to say. I don’t read a lot of science-fiction (although I’ve really enjoyed some of the sci-fi I’ve read. I think my main problem, and the same goes for fantasy, is that I don’t have much patience for world-building and descriptions) but he explained that although it was classed as science-fiction, and indeed it purports a world that is very similar to ours but with some differences (mostly, the protagonist of the novel, Gabriel Schist, years back discovered the HIV-vaccine but , rather than simply creating a vaccine against that illness, his vaccine reprograms the immune system of the person that receives it and protects them against many other illnesses), it was a bit different to most science-fiction. He told me, as mentioned in his biography, that he had worked in nursing homes and the novel was also about Alzheimer’s disease. I read the description of the novel and was intrigued. And yes, I agree with him, his novel is not a standard science-fiction novel, although it’s true that some of the best sci-fi looks at what makes us human and explores metaphysical issues.

The protagonist of the novel, Gabriel, a famous scientist who won the Nobel Prize for his discovery,  is in his early seventies and suffers from Alzheimer’s, fairly early stages, but noticeable enough. He is trying to hold on to his identity, testing his memory and using tricks to orientate himself and hold onto reality, but it is not without difficulties. The book wonderfully describes the residents of the nursing home, some of their peculiar behaviours, but also the persons behind the behaviours. The novel goes back and forth in time, as does the memory of the character, from 2018 to the 1950s, when Gabriel was a weird young boy (he seems to have presented some traits suggestive of autistic spectrum disorder, likely Asperger’s) already determined to solve the problem of future infectious diseases, and also covering the years when he met his wife, the dissolution of his marriage, his great discovery and how he eventually connected and got to know his daughter. All this is interspersed with what is happening now (well, in the very near future) at the nursing home, as Gabriel never goes out. Suddenly, some of the residents start getting ill, and the virus (if that’s what it is) puzzles everybody as it acts as no known illness. Gabriel starts to have strange experiences that he’s not sure if they are hallucinations or real (the readers are free to make up their own minds about this, although if one chooses to go with a rational explanation, there are enough clues within the story to suggest how his mind might have come up with such weird events) and becomes convinced that he’s the only one who can fight this terrible illness. His is a desperate race, not only against the illness itself but also against Alzheimer’s and the progressive degeneration of his mind.

The novel is written in the third person, although always from Gabriel’s point of view, giving the readers a great insight into the processes and difficulties of a mind coming undone, of the strength of memories of the past, sometimes more vivid than the present, and the style is fluid, with some beautifully descriptive passages, and some very vivid moments, particularly Gabriel’s memories, filled with emotion. Gabriel is a scientist and a keen observer, even in his current state, and that serves the novel well.

The characters are realistically drawn and it’s impossible not to care for them. Gabriel is confused and unclear at times, he hesitates and his self-confidence is marred by his illness and by previous experiences. He feels guilty for letting people down in the past, for his use of alcohol (initially to try and fit in with social expectations, as he was too different and too intelligent for most people, but later he got to like it and used it as a coping strategy but also as something he enjoyed), for allowing his wife to leave, for not being there for his daughter … He also feels guilty because he’s always said that human beings are predictable and not interesting enough and he hasn’t loved or cared for many of them. But his experiences through the novel put him to the test more than once and he discovers that it’s never too late to learn more about yourself. The author, who evidently has first-hand knowledge, depicts well the changes in humour, the confusion, the fear, the loneliness, the disorientation, and also the tenacity and the spirit of the elderly residents, including those moments when their personalities shine through the illness. The character of Melanie, Gabriel’s daughter, and her difficulty coming to terms with the illness of her father (all the harder because of his once brilliant mind), reflects well the difficulties of the families, with their guilty feelings for not visiting more often or for not being able to do more and their difficulty accepting the new circumstances (although not everybody is the same, of course).

The running of the facility, Bright New Day, also rings true. Understaffed, with routines to suit staff rather than residents, and with a mix of staff, some very caring and professional and others not so much. The novel is not an indictment of nursing homes, and other than one of the staff members, everybody works hard and is caring, but it does reflect the difficulties of running such facilities within a limited budget and trying to care for residents as individuals.

The plot is intriguing and the issue of if and how Gabriel might manage to defeat the virus is a page turner, although there are some very quirky aspects of the story that some readers might find challenging (not the scientific part as such. Although I’m a doctor I don’t think readers without medical knowledge will have difficulty with the general concepts behind Gabriel’s discovery. It is a fascinating idea). The story requires some suspension of disbelief although it is also possible to read some of the clues offered through the fragments of Gabriel’s memories as proof that a less fanciful interpretation of events is also possible. That is up to each reader.

I have to confess to feeling very moved by the story and being teary-eyed a couple of times but don’t worry, there are fun moments too and it is not a sad story but a life-affirming one. The ending, whatever interpretation we choose to go with is joyful and positive and might be meaningful to many readers.

This is not an easy novel to categorise in any genre. I think most people who are interested in Alzheimer’s will enjoy it, and people who like books on medical subjects, as long as they have a well-developed imagination. I recommend it also to people interested in memory, identity and in the big questions, and to those looking for a positive and inspiring read.

 

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