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All the Dancing Birds Paperback – January 3, 2013
"Children of Blood and Bone"
Tomi Adeyemi conjures a stunning world of dark magic and danger in her West African-inspired fantasy debut. Learn more
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I won this book in a Goodreads First Reads giveaway. This is yet another book that I wouldn't normally read, and once again I was pleasantly surprised by how much I enjoyed the story.
Lillie knows that something is wrong with her. Lately, her memory isn't what it used to be. She chooses to hide it so as not to worry her children, but she can only hide it for so long. When her strategically placed sticky notes fail to keep her memory from failing, her secret becomes exposed. Her children respond to her illness in very different ways. Her son embraces the illness and does everything to get her help, but her daughter sinks into denial and starts to avoid spending time with her. Lillie finds her comfort in writing letters for her children to read once she is gone, and using those same letters to help her hold on to those memories just a little longer.
Lillie's story is tragic and heartbreaking. To see the decline of both her mental and physical state from her point of view was eye-opening. This book shows the pain and loss caused by Alzheimer's from all points of view and makes it easy to empathize with the characters and their situation.
This book is powerful and emotional. It is very simple and very well written. It is not simply a story of someone with Alzheimer's, but the personal account of someone who is slowly losing who they are. I knew before I even started this book that it was going to be sad, but I wasn't prepared for how much it would make me appreciate little things we tend to take for granted. This story gives great insight into the mind of a person with Alzheimer's and the struggle that they endure. I would definitely recommend this book to anyone who has a loved one that has been diagnosed with this horrific disease or anyone interested in a powerful read.
The story is told from Lillie Claire's point of view. It starts off on the day she realizes there is something not quite right with her mind. She forgets things, sometimes cannot think of words, or make her mouth say what she wants to say. It is quite scary and she tries to hide it as long as she can.
Her children eventually notice and her son takes her to the doctors. Her son is great through everything, trying to help her out as best he can and really being there for her. Her daughter on the other hand acts like a spoiled little brat for a good part of the book. She acts like her mom has some kind of control over this and is just being this way to annoy her. Her mom gets confused at the airport on the way to Hawaii with her daughter and ends up in a questioning room. They miss their flight and the daughter is just incredibly angry with her mom for that. How could she do that to her? It was just...she holds onto that for a long time and it is just like do you not realize that Alzheimer's is not something she can really control? I think if she could she would. I was glad when the daughter finally started being nice to her mom again, but I never liked the daughter. She was always a little too self absorbed for me.
It is really kind of scary reading how Lillie Claire progresses. My main issue however is that it is hard to tell how much time has passed. How quickly has this disease progressed? How quickly did it get to the point that she needs someone with her all the time? I never really knew if it was one day or one year between chapters. There also seemed to be a lot of time that is just skipped over. I felt like if it would have shown the progression more gradually, showed more of the daily workings of Lillie Claire, it would have been a more powerful book. Because so much time seemed to have elapsed between the chapters I didn't really get as engaged as I could have. I did almost cry at the end of the book though just because it is really sad. It makes me think of the people I have lost and it is just hard to read.
The one part of the book I didn't really like were the letter to her kids. I really just skimmed them. I am not sure why exactly I didn't like them, but they kind of bored me. I didn't really care so much about them, but I could see where her children would love to read them once she was gone.
Overall a good book, but I just felt if it would have been deeper, more detailed in the progression of the disease, I would have enjoyed it more.
This review was originally posted to Jen in Bookland
It has to be, since McCanta chose to write a first-person narrative. And that, I think, is a fatal flaw. If McCanta tried to show us Alzheimer's using the language and logic of a real Alzheimer's patient and her increasingly distorted ability to perceive, remember, and act, the reader would be as hopelessly at sea as the Alzheimer's patient herself, and abandon the book a third of the way through.
One of the most unrealistic aspects of this book is the extraordinary insight Lillie Claire has into her disease. She is aware of her cognitive dysfunction, she is aware of her physical problems. McCanta hammers on the word "aware" to create a growing sense of horror, and the further into the progression of the disease, the more she uses the word. However, "anosognosia", or lack of insight, is so common in Alzheimer’s that its presence is used to help diagnose the disorder. Although often referred to as denial, it is not; instead, it is a condition that results from physical changes in certain regions of the brain, which leaves the patient genuinely unaware that their abilities are compromised by illness. And whether or not a given patient starts off with some awareness of his problems, studies have repeatedly found that as Alzheimer's progresses, insight into his impairments decreases significantly.
In fact, we don't have to rely on McCanta's imagination to know what it's like to be "inside" Alzheimer's: we can ask the patients themselves. Quotes from the Alzheimer's Association's "Voices of Alzheimer's Disease": "This disease is a lot more visible from the outside than it is from the inside. My wife and family decided I needed to get checked." "I didn't know anything was wrong. I didn't have a clue, and I still don't feel like it." "When I was working in the non-profit organization I was in, they had changed their pattern of working with me very subtly, taking away things, restricting what I got into, and so on. They knew two years before I did that something was wrong." "I did not sense I was having difficulty and my wife didn't either. Some people I worked with started noticing I did things that weren't quite what they thought I would normally do."
Nevertheless, since some patients do have some insight, and since symptoms emerge slowly and insidiously and come and go, the first few chapters of All the Dancing Birds are reasonably believable ... including the reactions of Lillie Claire's children. Family members may be in complete denial, even when the patient is in the moderate stages, especially if they don't live with the patient and see the cognitive dysfunction on a daily basis.
But the deeper I got into the book, the more disturbed I became at how thoroughly unrealistic it was. For example, Lillie Claire is far more oriented, both in time and in place, than an Alzheimer's patient would be in any of the stages. Examples: She knows how much time has passed (she danced for two hours at daycare, where an Alzheimer's patient wouldn't remember what she'd been doing, let alone know for how long.) She knows what time of day it is, even when she is on hospice ("It is late afternoon. I can tell by the shadows that fall across my bed and hold me down.") and she knows what that means in terms of which caregivers will be in her home and what they'll be doing. She knows what the different seasons are, remembers their passage, and uses them to figure out how many years have gone by. She knows she's in her home, which room she is in, which room she wants to be in and how to get there, and even which rooms others are in, even when she can't see them. Even after the very traumatic experience of having a seizure, being hauled to the emergency room, and being admitted, she knows the difference between day and night, she knows she's in a hospital, and even realizes she's in a different room when she wakes up after she's been sedated. None of these are in the least bit realistic. Temporal and spatial disorientation actually begin to be apparent in Stage 4 -- they comprise 10 points out of 30 in the MMSE screening test -- and quickly progress.
All Alzheimer's patients develop "The Four A's of Alzheimer's", i.e., Amnesia, Aphasia, Agnosia, and Apraxia. Each of these emerges early in the course of the disease, and grows progressively worse as the brain is relentlessly destroyed. All the Dancing Birds fails to realistically reflect the timing of their emergence, the ways in which they present, the rates at which they progress, or the numerous ways in which each or any of them disable the patient.
Take, for example, aphasia. The book implies that this primarily constitutes minor problems with word retrieval. Actually, aphasia is characterized by partial or total loss of the ability to communicate verbally or using written words. An Alzheimer's patient may have difficulty not only speaking, but also reading, writing, recognizing the names of objects, and/or understanding what other people have said. Difficulty speaking involves more than problems with word retrieval; even in the earliest stages of the disease, the patient substitutes words (real or imaginary), apparently without realizing the wrong words are being used, and also begins to exhibit problems with syntax and grammar. By the beginning of Stage 7, speech is limited to approximately a half dozen words that are intelligible, but not necessarily the words the patient intends; and by mid-Stage 7, speech is completely lost. On her website, McCanta acknowledges that she took "a great deal of literary license" by "allowing Lillie Claire’s thoughts to incorporate intelligent and robust language until the end." However, it's more than just Lillie Claire's thoughts that involve an eloquence, intellect, and intelligence that an Alzheimer's patient wouldn't have -- so do her interactions with those around her. She holds conversations that could never have taken place, not only because she wouldn't recall the words she wanted or be able to frame the thoughts and ideas, but also because she would have difficulty understanding what is being said to her, her short term memory loss would prevent her from following the logical thread of the conversation and interfere with her ability to make plans and understand their ramifications, her increasing problems with executive functions would prevent her from formulating appropriate responses, and her episodic memory and personal semantic memory problems would result in provoked and spontaneous confabulations. Moreover, her thought processes and reaction times would become slower and slower, to the point that her children would bring a given conversation to a halt much more quickly than they do. Similarly, Lillie Claire writes letters that she couldn't possibly have written, not only due to numerous problems with cognitive functions (perception, thinking, reasoning, remembering, attention, and language), but also due to increasing difficulty with, e.g., apraxia, ataxia, visual agnosia, and apathy. I was absolutely dumbfounded to discover that she supposedly started writing these letters after she discovered her wallet and keys under the lettuce and continued to write them for eight of the ten years of her journey. No way.
There's more, much, much more, but I've carried on long enough. If you want to enjoy lyrical writing, read All the Dancing Birds. It's beautiful. Just remember -- it's fiction, no matter how you look at it.
If you want to understand Alzheimer's, try Jennifer Ghent-Fuller's free article, "Understanding the Dementia Experience", and videos on thoughtful caregiving:
Teepa Snow (awesome): http://www.teepasnow.com/
(You can find many videos of her training classes on YouTube, for free.)
Jolene Brackey's book, "Creating Moments of Joy".
"The 36-Hour Day" by Nancy L Mace and Peter V Rabins. You'll have to buy it -- don't trust any site that purports to let you download a .pdf for free.
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