BOOKS BY (OR FOR) CARE PARTNERS
The Faraway Nearby
by Rebecca Solnit (2013)
I first heard about this book from a reader of this blog. She asked me about my feelings about the use of the phrase "decline into Alzheimer's", which appeared in an interview with the author of this book, Rebecca Solnit, published in the Guardian. I decided to give the book a go.
I listened to this as an audiobook, read by the author. As an Australian speaker, I initially found the broad American accent quite jarring, but after a short while, I was completely captivated by the poetic quality of both the writing and the reading. I would recommend immersing yourself in this book in this way.
The writing is, quite simply, exquisite. This book is similar to 'Iris' (described below) in that it is not a book about dementia per se, but it does go deeply into the experience of having a loved-one with dementia, in this case, the author's mother. Solnit weaves together stories from her life, stories from literature and history, to tell the broader story of the interconnectedness of our worlds.
The picture that Solnit paints of her mother is not a generous one. She is honest about the tensions in their relationship that existed long before her mother was diagnosed with dementia, and about how this shaped the way she feels about her mother now. This is another delightful example of a story that does not reduce and simplify the experience of dementia to one of suffering and grief, but recognises the inherent complexity of lives lived. Although it may be slightly peripheral if you are trying to learn about dementia and/or caregiving, this book is a real treasure.
I Still Do
By Judith Fox (2009)
Photographer Judith Fox documents her life with husband Ed, who has a diagnosis of Alzheimer's dementia. This is largely a photography book, with short comments and reflections throughout. I really like that in this book Judith writes to reflect on her own experience as a caregiver, rather than trying to construct some idea of what Ed's life is like. The photos of him tell that part of their shared story.
Photographing the man I love is an intimate process. When I watch Ed through my camera lens, despite the distance of several feet between us, I feel as though I am caressing him. My camera isn't an obstruction, its another way of touching him.- Judith Fox, afterword
The photographs are indeed intimate and candid, documenting the many aspects of Ed's life and personality, as well as how these change with the progression of his dementia. Judith's motivation for photographing Ed was to remember and celebrate him and keep him close as his dementia progresses.
Foreword by Roy L. Flukinger.
Judith has also made a lovely video where she talks about her motivations for creating this book.
Iris: A Memior of Iris Murdoch
by John Bayley (1998)
Once a Professor of English at Oxford, author John Bayley writes of his life with his wife, prolific English writer Iris Murdoch. It is beautifully written, and oh-so-romantic. The book is written in 2 sections, 'Part 1: THEN' and 'Part 2: NOW'. Very loosely, the first section describes Bayley and Murdoch's early relationship, and the second section describes their life together after Iris's diagnosis of dementia. The way Bayley writes of Iris is so generous, warm and loving. You really get a sense of why she was so successful and why he fell in love with her (heck, this book made me fall in love with her!). On the cover, it quotes Nicci Gerrard from the Observer calling this book "The greatest love story of our age: incomparable". I just might have to agree.
To me, there are two really valuable qualities of this book. Firstly, it emphasises the importance of relationship and social history, and the context this provides to the way people with dementia and their families experience their everyday life. It is in the context of our knowledge of Bayley and Murdoch's history, of their devotion to and admiration of each other, that we come to understand how Bayley in particular experiences their life together when Iris develops dementia.
Secondly, there is an astoundingly candid report of the anger and frustration that Bayley often felt toward Murdoch. In particular, Bayley describes one outburst over Murdoch overwatering plants that he had told her not to (see pages 248-249). Bayley 'explodes' in a fit of rage, yelling and performing "furious aggressive gestures", with a bewildered Iris looking on. Set in stark contrast with the very gentle and loving account of their relationship that permeates the remainder of the book, this is a most poignant representation of the complexity of human emotion that can manifest in the shared experience of illness. I am grateful to Bayley for sharing this honest account of his experience, especially as parts of it do not paint him in the best light.
I would highly recommend this book. I loved it!
This book represents the first a series of books by John Bayley, known as 'The Iris trilogy'. The second in the series is 'Elegy for Iris' (1999) and the third is 'Iris and Her Friends' (1999).
A popular film was released in 2001, called 'Iris', with Dame Judy Dench playing the role of Iris Murdoch. I have not yet seen it (largely because I wanted to read the books first) but it comes highly recommended.
Please feel free to contact me with recommendations! I am always looking for new books to add to the collection!
Reviews to come...