Book review by Mary McManus
A Beginner’s Guide to the End. How to live life and face death’ – By BJ Miller and Shoshana Berger
In May 2014, my 86-year-old father, who was suffering from prostate cancer, was told he had six to 12 months to live. In November of that year, my mother, aged 81, and diagnosed with mixed dementia, fell and broke her hip. Until that point, my parents had been caring for each other and living a pretty independent life with some input from family and a carer who called every morning.
The fall changed everything, giving my mother mobility problems and advancing her dementia. As a family, we had to provide substantially more care with the six of us taking it in turns to stay overnight. Having a care package helped enormously and we are indebted to those wonderful carers who made a tough time much easier. My father passed away in 2015 and my mother in 2017.
Caring for my parents with advanced illness was unchartered territory and it was difficult to get information at times, especially with my mother’s dementia.
‘A Beginner’s Guide to the End. How to live life and face death’ would have been a helpful resource for me. The combination of the experience of the authors, BJ Miller, a top palliative care consultant who has had his own brush with death and Shoshana Berger, a writer with experience of caring for her father with dementia, results in a book that contains sound practical information and advice on the medical, emotional and practical aspects of the end of life for both the person and their carer.
I liked the layout of the book. It is very user-friendly with the following sections, Planning Ahead, Dealing with Illness, Getting Help Along the Way, When Death is Close and After. It is full of useful practical information that is presented clearly and concisely using examples from the professional and personal experience of the authors.
The Planning Ahead section, for example, has information on living wills and advance statements that help people to start thinking about how they want to be cared for if no longer able to articulate their own wishes. The chapter, Symptoms 101, lists common end-of-life symptoms with medical and alternative ways to treat them. A chapter, entitled, Hospital Hacks, offers advice on how to navigate hospitals.
I would have found this chapter really useful as my mother was in and out of hospital in her final year and my father passed away in hospital.
For example, it would have been useful to know that it is possible to ask for the monitoring machines to be put on silent.
Whilst the authors are from the US, most of the information in the book is tailored for the UK, such as when and how to access palliative care.
It also gives a good explanation of palliative care, something I would have found useful when caring for my parents.
The book contains a very handy reference section at the back with references referred to in each section listed such as www.dementia-directive.org, a website that provides a form for specifying what care you would like if you develop dementia. There are also useful to do lists such as for when a person has passed away including how to shut down their social media accounts.
Reading this book on my father’s fourth anniversary was emotional for me and I did shed a tear. The authors have taken a difficult subject and written about it with knowledge, compassion and, at times, humour.
I would recommend this book as a resource to anyone who has elderly parents or who, like me, has completed that journey but will have to consider my own mortality.