Dementia, Who Are You and What Have You done with My Mother? by Sarah Jones

In a professional sphere, I’ve spent time with hundreds of clients living with dementia. I’ve seen grief and uncertainty on the faces of their loved ones; I’ve seen gentle patience and agonising impatience; I’ve used all my desperate skills to peek through the layers of clients’ minds to find them, even briefly.

I have held hands and sung songs. I have stage-acted my way through strange scenarios. In some cases, I have even run through suburbs searching for escapees. I have snuggled people back into bed, I have had breakfast with widowers who can’t remember where their wives have gone. I have shed tears and prayed with precious people as they’ve faded away. I have been allowed to love deeply, in unique and sacred ways. 

In the diverse and often bleak world of dementia, I have seen so much. I have, however, never experienced the heartache of losing a loved one to the disease – my own, personal loved one. If this is the case for you too, then this book will be a help. With the population ageing, the estimate is that, by 2050, almost one million Australians will have dementia. If you haven’t been touched by dementia yet, you will be.

If you haven’t been touched by dementia yet, you will be.

Written by Sarah Jones, a Christian author from the northern beaches of Sydney, this is a warm and honest autobiographical book, commencing years ago in Jones’ childhood. It describes a generous, loving mother and a happy family life, revealing the Jeannie Somerville of “before”: she who would soon become the protagonist in a story of change and unstoppable decline. 

Jones recounts a growing disquiet. “Strange things like these kept happening”, she writes, as the family begins to observe behaviour that was not usual for their wife, their mum, their grandma –   beginning with hearing and memory loss, and then moving into massive changes of identity that were truly unnerving and, at the start at least, impossible to explain or understand. 

I found myself grappling with the evolution that was taking place...

“I found myself grappling with the evolution that was taking place,” Jones writes, as she and the family lean slowly and reluctantly into the diagnosis of frontotemporal lobar degeneration. We are then taken on the journey through their fears and concerns, surprises and joys, as she moves from a relationship of mother and daughter to stranger and carer. 

We follow as she transitions from caring for Mum at home, to caring for her through full-time residential care. We watch as long-held family traditions evolve to make way for what now was realistic or even best for Mum. There is guilt and heartbreak and daily grief, and we rise and fall with Jones on the rollercoaster of challenges – great successes (the wondrous effect of music!) and tremendous losses (language, personal hygiene). And almost all of it is out of their control. 

We are invited to observe and learn...

This is a personal story, and we’ve been allowed to look through its window. The book is described as a “daughter’s journey”. We are invited to observe and learn as privileged readers, as it is both a private journal and a trainer’s manual. 

Jones has walked alongside her Mum, caring for her rightly and with dignity while wishing desperately for the past, all the while rocketing towards this known, and unknown, future. We witness here the power of holding someone’s memories for them, the challenge of loving someone who is present and yet very much absent. And praying for help from God – comfort and courage – every step of the way.

Sally Swan is a care advisor with Anglicare. Dementia, Who Are You and What Have You Done with My Mother? is available at www.wordsbysarahjones.com/books