Book group: Extreme caring by Stuart Donnan

Stuart Donnan wrote this book – Extreme caring: You have to go on – to share his experiences of caring for his wife Beryl after her stroke and later dementia diagnosis. It was published three years ago, in the same year that Beryl died. 

Caroline Branney, who manages our Dementia Knowledge Centre, says, ‘When his wife had a stroke in 2000, Stuart started on a journey of learning to understand and manage her needs and the complex side effects of the stroke. Beryl was also diagnosed with dementia 10 years later. This book is Stuart’s account of how they lived with the impact of these health issues.

Stuart, a medical academic, first met Beryl in Australia, where they both grew up. They moved to England together in the 1960s, where they eventually settled after spells back in Australia and in Hong Kong. 

‘It was both easy and difficult to read!’ says Janet.

‘A large proportion of the book describes the life they have led since 2000 and the practical and emotional issues they faced,’ says Caroline. ‘The second half is more reflective, exploring the meaning and ethics of this experience.’ 

Janet Sellars, a reader in East Yorkshire, says, ‘It was both easy and difficult to read! It was well written about his wife's problems, with some funny bits and some heart-breaking parts too.’ 

The book’s detailed contents page and clearly marked chapters and sub-sections make it easy to pick up again and refer to. 

‘It allows the reader to dip in and out of the book easily and return to bits to re-read quickly,’ says Caroline. 

Words and silence 

Beryl’s stroke impaired her ability to process language and produce speech – known as aphasia – but she still found ways to express herself. 

‘Although her aphasia slowly improved,’ says Caroline, ‘she never recovered her fluency. Beryl was recorded in an interview in 2005 and much of the book is based on that.’ 

When Beryl was diagnosed with dementia, she and Stuart had to face additional challenges of stigma and lack of awareness. 

‘There are some examples of how Beryl regularly surprised others by her choice of apt words and her responses even though she could hardly speak,’ says Caroline. 

‘Stuart admits that, even as a medical academic, he didn’t like the term “dementia” and its associations. He is aware of the stigma that can still surround the condition,’ says Caroline. 

‘Themes covered include the importance of music and art in their lives and how even silence – such as in a meditation session – can be enjoyed together.

‘There are some examples of how Beryl regularly surprised others by her choice of apt words and her responses even though she could hardly speak. 

‘Although Stuart does talk briefly toward the end of his book about how Beryl was before her stroke, I think it would have been more interesting if we had learnt more about her at the start.’ 

Endurance and help 

The book’s title underlines the stresses of caring, and Stuart’s story demonstrates the need to get whatever help and support is available. 

‘The term “extreme carer” has been taken from the idea of extreme sports,’ says Caroline. ‘Stuart describes caring as a feat of endurance, with many ups and downs.’ 

Janet says, ‘He doesn't hide the fact that both his patience with and his love for his wife of many years was stretched to almost breaking point at times over the years of “extreme caring”.’

‘I will tell a friend who has a family member with Alzheimer’s to read it,’ says A Lee.

‘He acknowledges how this can be unsustainable,’ adds Caroline.

‘He found that the stress meant he had to seek help and respite at various stages, and eventually Beryl was admitted into a care home.’

A Lee in Greater London, speaking from her own experience of dementia, says, ‘The book is very good, and I will tell a friend who has a family member with Alzheimer’s to read it.’ 

Extreme caring: You have to go on, by Stuart Donnan (DestinWorld, 2016), 252 pages, £9.99, ISBN: 9780995530706.