January 15, 2016

book reviews by a carers on fiction, carer stories and help and answers for the carer !

KEEPER, Andrea Gillies.

book review -

This is a really important book.

It draws the reader into her story very quickly, and anyone who has cared or is caring for an older loved one with dementia will immediately find themselves in the story. It's a compelling book, sometimes heavy going.

However, anyone who is caring for a loved one with dementia at any age will find this book a good source of knowledge. The author intersperses the story with many down to earth, easy to understand facts explained in layman's terms about the functionality of the brain and the effects of Alzheimer's disease on the brain function. There are so many amazing insights into the disease, which are then related to observations of her mother-in-law walking the dementia journey. 

The carer's gradual slide into crisis is somewhat disheartening, but this is partly caused by the very poor support available at that time in the UK for carers of people living with dementia. One would hope that the appalling lack of accommodation in residential facilities for and lack of appropriate assessment of people who need 24/7 care has hopefully been tackled in today's health care environment in that country.

As a book about a carer reaching crisis point, it does eventually become heavy going and somewhat depressing, but thankfully the story ends positively.

Some really compelling spots in the book:

The author speaks at one stage about escaping into "laptop land" as a source of relief from the constant responsibility - I can relate so well to that!

P26, bottom para - "Doing is a big preoccupation." So true - watch any residents in a care facility and you'll see that, if they're still able, they're all trying to be "doing" something.

P39, par 4 - nomadism is a good description of what seems to keep many happy. 

I recommend reading pages 66, par2 through 68: so often carers are told all the things that will definitely work if you try hard enough, do it right -  these pages echo my sentiments - theory is theory is theory: a person walking the dementia journey is unique and telling carers that this will work if they do it right leads them to feeling a failure and further stress because they couldn't make it work.

p296, top of page - a carer grows weary of the journey, very moving and so relatable: "I'm tired of Alzheimer's. I'm tired of her decline. I'm tired of being yelled at. I'm tired of dealing with it all."

A very important book.

book review on Ten thousand joys & ten thousand sorrows : a couple's journey through Alzheimer's by ALZ NSW Healthcare professional

Because I have a background in Buddhist meditation I really connected with the story and the couple’s experiences of living with dementia as described in the book. I have often wondered what the experience of living with dementia would be like for experienced meditators. I think it possibly taught me more about the benefits of meditation.  I was so moved by Hobb’s capacity and willingness to describe his experience. I think it gives a rare insight into what it might be like for a person with dementia. We don’t often have the privilege of hearing it from ‘the horse’s mouth’ and certainly not with such humour, poetry and precision. I was inspired by his capacity to continue living with a sense of purpose, learning and personal growth throughout the course of the disease and heartened to know that is possible.

The carer’s experience also gave me insight into the enormity of that role. I imagine her as a pretty calm, sensitive and resilient person with a great deal of family and community support… and yet, with all that on her side, she was clearly exhausted by the experience. It made me think about carers who go into the role with significantly less resources and I guess increased my understanding of and compassion for carers. What a staggeringly enormous undertaking!

 Quite simply it was a beautiful story about a truly inspiring couple.  Their capacity to ‘be with what is’ supported them through the journey with incredible positivity, wisdom and acceptance.

books to help with meditation and mindfulness include:
Mindfulness for carers : how to manage the demands of caregiving while finding a place for yourself
by Dr Cheryl Rezek
This book shows how simple mindfulness techniques can help caregivers to manage the stress, anxiety, depression and burnout that too often accompanies the care of people with physical, psychological or emotional needs. The enjoyable mindfulness exercises will help caregivers to regain control and maintain a positive outlook.

this book may also be helpful!!
we have more copies of ..."Dementia Support for Family and Friends”
Book review Dementia Support for Family and Friends by nurse and daughter in-law of mum with moderate to severe Dementia

"Dementia Support for Family and Friends”

by Dave Pulsford and Rachel Thompson.

As a nurse and daughter in-law of mum with moderate to severe Dementia, I found this book to be amazing, and I cannot recommend it more highly.

When you have a family member who is not yet diagnosed, or has already been diagnosed, all the knowledge you may have gained as a professional goes out the window and you are in shock, and to a degree lost as to what information is helpful.

I believe this is the book that all doctors and professionals should recommend to family and friends to read…. It answers a lot of questions that people may have had, but were too overwhelmed to ask. I have found it personally to be the “go to book” for all information I needed to help us to know what to expect, and what we could do to help, such as using dementia empathy, etc…

How it effects the person who has dementia and family dynamics through each stage…. It’s the sort of book you want to keep in your glove box or bag, so you have it on hand.

I found a lot of books focused either on the beginning stages of the Dementia when symptoms first appear, or when / when not diagnosed, or at the very end stage when someone perhaps may be in care or have a career, and very little helpful information in the middle.

Not only is this book written in a friendly, supportive, and realistic way, but it also almost feels like the book is like having a wise experienced friend there 24 hours a day to guide you through each step of the way, without judgement.
This book gives supportive useable advice relevant to people from all walks of life, where I found other authors only focused on one area, or it was written in such a way that you felt the author didn’t really empathise or have true insight…. This book gently helps you through each stage of the Dementia process, it’s written in a way that keeps the person you love in a dignified light so you feel empowered to then help them.
This book is like a true snap shot of a 24 hour day with a loved one with Dementia at every stage.

this is available for loan to members of AANSW - if you would like to reserve them please email the Library on nsw.library@alzheimers.org.au

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