Book review: I have Alzheimer’s: my Father’s Story

I have Alzheimer’s: my Father’s Story is one of the first books in which a patient with Alzheimer’s tells his own story. The author, Stella Braam, successfully explained Alzheimer’s in a vivid and impressive way through the stories of his father, René van Neer, who was diagnosed of Alzheimer’s in early 2003. The book is personalized, also reflects the general difficulties Alzheimer patients face, and what can be done to help. René was actually the co-author of this book, he worked together with Stella to document the course of his own disease. He told Stella what he experienced, and she wrote it down. They ‘worked’ closely with each other, like all the old times. The book was well received in the Netherlands when it was published in Dutch in 2007, then it was translated into German, Estonia and Lithuania. In 2012, the book was translated into Chinese, for the uprising Alzheimer patients in China.

Indeed there are many books about Alzheimer’s, but they all focused on the disease itself. On the one hand, they are too scientific in average; on the other hand, without the live stories in this book, they are a bit too plain. However, this book gives you a very clear view of how life can be with Alzheimer’s. Personally I didn’t have that much knowledge about Alzheimer’s before, but after reading the book, I even felt ashamed of the parts I misunderstood Alzheimer’s.

I was unable to put the book down after I started. At first, it is a book between a daughter and a father, like all the other families. By reading the book, you feel being touched by the love between Stella and his father. Moreover, René is a special father. Memories fade away faster while people are getting older, but for René, who has Alzheimer’s disease, also known as “Alzheimer’s” or “dementia”, the situation is worse. Alzheimer patients forget/are not able to remember things on a daily basis. As what René described to Stella: “It’s as if part of you no longer exists. In the afternoon you can’t remember what you did that morning.” By reading all the stories and dramas happened to René, this book makes you to sympathize with Alzheimer patients, and realize there are a lot can be done to improve the living standards of this group.

The structure of the book is also interesting. The book started with a dramatic story in a nursing home. René screamed at everyone in the nursing home and became violently, trying to escape from the ‘prison’ he was in. Well, some people may think, that’s normal, that’ how Alzheimer’s is. Those people are just mad. However, after you read through the book, you will find out that is more or less stereotype. Have you ever bothered to figure out why they are mad? According to René, he felt insecure most of the time. What makes the situation worse is, not all the workers in nursing home have enough knowledge to understand that, or they have not been trained to deal with Alzheimer’s. There is also a lack of enough workers in the nursing home, they cannot take care of each patient all the time, what they can offer is mainly the basic helps. But for the people with Alzheimer’s, who cannot go to toilet if no one tells them the closestool is just in front of them, that little attention they get are far from enough.

There are some even sadder facts in the book. Stella’s father was a psychologist, he had been studying people’s emotions for his whole life, but at the end, he couldn’t even control his own. In the nursing home, he was hopeless and anxious most of the time, unless, someone he trusted could be there with him, such as, Stella. Another sad fact is that many elderly Alzheimer’s patients seldom leave their buildings, both with the family and the nursing home. The main concern is that the patient may lose his way. But Alzheimer’s patients do not want to be excluded from society, and it is René’s dream that they will continue to ‘belong’.

All in all, through all those ‘ridiculous’ stories, you realize that Alzheimer patients are no longer aware of the world around them is not true. Sometimes they do experience stronger emotions. But they can’t explain why they feel that way, because their power of speech is also affected. What Stella finds important for a good care is to sympathize and understand. She describes Alzheimer patients as living on a kind of island. They cannot reach us, but we can reach them. Everyone gets old, no one keeps healthy forever, how we help the people who are suffering now, is how we make the situation for ourselves better in the future.

There is a poem Stella wrote for Alzheimer patients that I would like to share with you:

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.”

 

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Amsterdam Social Science is a platform for young social scientists. We publish a hardcopy peer-reviewed journal, and we maintain a blog.

One Response

  1. Dr Arshad Javed Rizvi
    Dr Arshad Javed Rizvi at | | Reply

    fantastic and thought provoking