I have Alzheimer’s: my father’s story is one of the rare books in which a patient with Alzheimer’s tells his own story. The author, Stella Braam, successfully explains Alzheimer’s disease, also known as ‘Alzheimer’s’ or ‘dementia’, in a vivid and impressive way through the stories of her father, René van Neer, who was diagnosed in early 2003. The book is very personal, and at the same time reflects the general difficulties Alzheimer’s patients face and what can be done to help. René is the co-author of this book as he worked together with Stella to document the course of his own disease; he told his daughter about his experiences and she put it down in writing. The book was well received in the Netherlands when it was first published in Dutch in 2007, with approximately 60.000 copies sold; later the book was translated into German, Estonian and Lithuanian. In 2012, the Chinese version got published, for the rising number of patients with Alzheimer’s in China.
There are many books on Alzheimer’s; most of them focus only on the medical aspects of the disease, others being too scientific or too ‘plain’ without any real life stories of patients themselves. In contrast to that, this book gives you a very clear view of how everyday life with Alzheimer’s can be. Before reading the book, I personally did not have much knowledge about Alzheimer’s but while reading I sometimes even felt ashamed of my misunderstandings and assumptions about this disease.
For several reasons, I was unable to put down the book after I started. First of all, it is a book about the relationship between a daughter and a father, with all the ups and downs that occur like in other families. I felt very touched by the love between Stella and her father as it is expressed in the book. Moreover, René is a special father. Memories fade away faster while people are getting older, but for René, who has Alzheimer’s disease, the situation is worse. Alzheimer’s patients forget or are not able to remember things on a daily basis. René describes: “It’s as if part of you no longer exists. In the afternoon you can’t remember what you did that morning.” Reading the stories and experiences that happen to René, this book makes you sympathize with him, and realize that there is a lot that can be done to improve the living standards of Alzheimer’s patients in society.
The book is structured very interestingly. It starts with the disastrous situation in the nursing home where René is screaming at everyone, turns violent, and starts trying to escape from the ‘prison’ he felt he is in. Some people may think, ‘that’s normal, that’s how Alzheimer’s is, those people are just mad’. However, reading this book, you will find out that this attitude is more or less stereotype. While being perceived as behaving mad, according to René, he feels insecure most of the time. The situation gets worsened by the fact that not all the people in charge in the nursing home have knowledge to understand the behavior of Alzheimer’s patients nor have they been trained to react appropriately. Very often, there is also a shortage of nurses or care people in the nursing home; they cannot take care of each patient continuously but can only offer basic support. The attention that patients with Alzheimer’s get is far from enough given that they need constant support, even for going to the toilet.
The book reveals even more appalling conditions that characterize a life of a person with Alzheimer’s. Stella’s father had been a psychologist; he had been studying people’s emotions during his entire life whereas he does not have the ability to control his own emotions anymore. In the nursing home, he feels hopeless and anxious most of the time unless someone he trusts is there with him, such as Stella. Alzheimer’s patients are not longer sure if the world around them is ‘true’. Mostly, they cannot explain why they feel that way because their speech also gets affected. To these feelings of anxiety adds a feeling of disorientation: many elderly Alzheimer’s patients seldom leave their homes as they and their care people are concerned that the patient may lose his or her way. Alzheimer’s patients, however, do not want to be excluded from society; it is René’s dream that he will continue to ‘belong’. What are important elements of good care for Stella are sympathizing and understanding. According to her description, Alzheimer’s patients live on an island: They cannot reach us but we can reach them. Stella wrote the following poem for Alzheimer’s patients which I would like to share:
I dream of a land,
where people with Alzheimer’s,
can roam the streets,
in search of their house.
That house forever lost.
And where there is always someone who says:
“Come with me… I’ll take you home.”
Book review: I have Alzheimer’s: my father’s story, by Stella Braam (2005)