‘I remember the choir I joined and how I loved being part of it, but I had to leave because the organiser refused to allow me to hold a piece of paper on stage so I could read the words.”

“What a bastard” I said out loud when I read these words in Wendy’s book. I sang with a choir and I too greatly enjoyed the experience. I can imagine how much it would mean to a person with dementia. It illustrated to me how small-minded and thoughtless we are to people with dementia, how cruel we are, how little we understand this insidious and pervasive disease.

Wendy, a single English, mother of two now-adult girls, a long-term, non-medical member of the NHS and a fit and highly functioning woman was diagnosed with early onset dementia when she was fifty-eight. Her world was turned upside down as her way of life, the functions she once performed without thought totally changed or were no longer possible. This book, her second, tells how she fought tooth and nail to fight this disease. 

Reading her words made me realize how little I, a medical person, knew about this disease. And what I did know was so out-of-date - indeed cruel. I have since discovered that most people, like myself, believe that a dementia diagnosis means immediate non-functioning and immediate care, supervision and direction. A total loss of self. Wendy proves to us that this is not the case. Immediately she is diagnosed she fights the system, life and herself in a constant search for dependence, acceptance and happiness. We should all read this book - not only to understand dementia but also to understand ourselves.

What Wendy tells is so sensible, so basic - so sensible and basic that we tend to overlook it! She tells us about the affect the disease has on the senses. How noise is so distressing, the eyes have difficulty differentiating between colours and how their deterioration affects communication, the loss of taste and how that affects her enjoyment of eating, how her loss of smell has reduced and how it has changed her memories, how her sense of touch has changed. It is not pleasant reading about the slow and sad deterioration of another human being - but it is something we should all do. There but for the grace of God go you and I! And won’t we want people to understand and make allowances for us - not just cast us aside. 

At the time of publishing this book, 2022, Wendy still lives alone, still rides the bus, still copes. She has some good days, some bad days and some very bad days. But, as we age, we all face that! It is just more confronting, depressing and difficult for her. She walks us through her emotions, sadness, fear, anxiety, anger, guilt, happiness and, occasionally, her hopelessness and frustrations. She talks about the seasons, feeling lost, how she copes living alone in her own home, her memory room and her beloved walking and taking photographs. 

Coping takes determination, strength and guts. But she does it. She tells us about the attitude of the professionals; that after diagnosis she received no follow-up, no treatment. How she has received support via peers and how she supports the Alzheimers’ Association in the U.K. Fortunately she has strong support from both her adult daughters, one of whom is a nurse. (The differing opinions these two daughters have to their mother’s resuscitation, if necessary, is interesting. This demonstrates the importance of having an Advance Care Directive.) 

It is her sense of self, her positivity, her determination to assist other dementia sufferers, as well as herself, that keeps her going.

Wendy has much to tell and teach us. We will all benefit from reading Wendy’s story, more importantly we will be better able to understand and cope with the many, and increasing number of people, who have this disease.

If your understanding of dementia is not up-to-date, if you know someone with dementia, if you are caring for someone with dementia, if you have recently been diagnosed with dementia - Read this Book! It will give you hope.

Review by Patricia J Armstrong-Grant