Here is my quick review of this book: This may be the best book I have read about Alzheimer's and advanced dementia care. It is simple and should be read by every person, adult or child, who knows someone with Alzheimer's disease/dementia. Which means, everyone in the world should have a copy of this book.
Why is this books so wonderful? There are many reasons why this book is so great, but as a mother of a child who lived with his grandmother with dementia, I feel that there is no other book like this out there for kids like my son Jeffrey. While other children's books about Alzheimer's have been good at helping explain dementia to Jeffrey, most of those books talk about kids who do not actually live with their grandparent with dementia. Rather they talk about how to visit with their grandparent who usually lives in a nursing home. This book is the first good resource I have found for kids who live with a loved one with dementia and really captures what life is like for them. Being a caregiver as a child is difficult. They have to figure out how to be a child in an environment that is not always kid friendly. It can also be scary and sad for them to watch thier grandaprent change and get sicker. It is hard for them to figure out how to communicate with their loved one as the dementia progresses. This book talked honestly and compassionatly about these issues which can help kids understand living in a situation that most of their friends will not be experiencing. My son Jeffrey's review of the book (below) will help explain how a child relates to the book.
The other great thing about this book is that it is quite advanced in it's understanding of good Alzheimer's care. Even many of the books written by doctors in the profession do not talk about how to effectively communicate with and care for people with dementia.
For instance, the grandmother in the story gets frightened by a kitten, and the child, Julie, rather than "reorienting" her by telling her grandmother that the cat is a kitten and not to be afraid of it, Julie instead tries to make her grandmother feel better by telling her about her day at school. In the old, yet still often taught, way of Alzheimer's care, caregivers are taught "reality orientation" where you would correct the person and tell them that the kitten really is not scary. Such as saying "Remember, that is our kitten Molly who you have known for years. She is not scary. Let me put her in your lap so you can pet her." This kind of care increases agitation and can result in destructive behavior. Can you imagine, if you thought that kitten was a scary lion and someone plopped it into your lap? The poor kitten might go flying across the room! Instead, as the book shows, entering into the world of the person with dementia and knowing that they see things differently than we do allows us to effectively help them deal with their situation.
There is another great part in the book where Julie helps her grandmother eat by putting her food on a red plate. Again, this is advanced dementia care. People with Alzheimer's often need high contrast in order to see things well. Sometimes they can not see chicken or mashed potatoes on a white plate and so they do not eat, start to loose weight and can become malnourished. Changing the color of the plate increases their ability to eat. The same contrast can be used in many other situations such as the common problem of incontinence. Often people can not see a white toilet that is on a white wall so if you paint the wall behind the toilet dark blue, they can find the toilet and incontinence decreases.
In the book, Julie also uses art as an activity with her grandmother. Julie says, "Grandma never forgets how to make great drawings." This is the essence of the work we do with theCarolyn L. Farrell Foundation for Brain Health. We use art as a form of care. Humans seem to never forget how to be creative and use their imagination. If we can tap into that ability then we can create meaningful activities for people with dementia which increase their joy and decrease agitation and depression.
Jeffrey's Review: A Child's Perspective Jeffrey is nine years old and for two and a half years he lived in the same home with his grandmother with dementia. Now he lives just a few miles away and visits her often. This is what he has to say about "Why Did Grandma Put Her Underwear in the Refrigerator?":
"A lot of the book sounds like when we lived with Beep (that is what we call his grandmother). There was the part where the girl dresses up for Halloween but it scares her grandmother so she has to take off her costume and can't go trick-or-treating. Sometimes there are things I couldn't do when we lived with Beep because it upset her or was too confusing for her. That would make me mad but I also knew she was sick. I wanted to be able to do what other kids could do at home. The girl in the book also had fun with her grandma though, and I had fun with Beep, like our Edamame War. I understood the book and it sounded a lot like our life, except Beep is a lot sicker now."
Both Jeffrey and I recommend this book and I already bought five copies so we can give them to others who need it.
Rev. Katie Norris
About the Authors:
At 17 years old, Max Wallack is no stranger to Alzheimer's disease. At the age of ten, he was already a seasoned caregiver to his great grandmother, Gertrude, who lived at home with Max and his family. Mr. Wallack is a student at Boston University and a Research Intern in the Molecular Psychiatry and Aging Laboratory in the Department of Pharmacology and Experimental Therapeutics at Boston University School of Medicine. Max is the founder of PUZZLES TO REMEMBER. PTR is a project that provides puzzles to nursing homes and veterans institutions that care for Alzheimer's and dementia patients.
Carolyn Given is an experienced caregiver herself and an accalimed middle and high school educator with particular interest in intergenerational programming. Prior to her teaching career, she served as her town's Council on Aging Director and later became cover-story writer and editor of The Senior Advocate (now called the Fifty Plus Advocate Newspaper), a Massachusetts-based mature market publication. Most recently she was the recipient of an award from the Soul-Making Keats Literary Competition sopnsored by the National League of American Pen Women.