Liz Charalambous is a qualified nurse on a female, acute medical HCOP (Health Care for Older People) ward at Queen’s Medical Centre, Nottingham University Hospital Trust. She tweets at @lizcharalambou and is a regular guest blogger for the BGS.
Beloved old age is a fitting tribute to Margery Allingham, author of detective fiction (including most notably that of Albert Campion, later converted to a TV series). Published on the 50th anniversary of Allingham’s death, and illustrated with black and white photographs from both eras, the book is a work of two parts. It contains the accounts of caring for older relatives, seamlessly interposed between each era to span over half a century. Allingham’s previously unpublished work, ‘The Relay’, describes her experiences of caring for three elderly relatives more than fifty years ago. The account is brought to life by Julia Jones as she picks up the baton and continues the story with her experiences of being a carer for her mother with dementia, to present the story of ‘Beloved old age and what to do about it’.
She balances Allingham’s work by sharing her own present day refreshingly honest and frank account of caring for her mother with dementia. Allingham’s exploration of caring for older people includes the process of ageing itself, and the location, types and importance of care. This is followed through in each subsequent chapter by Julia Jones, to give us a balanced and contemporary perspective of caring for an older person with dementia. Allingham concludes by painting an inviting portrait of what ideal care could look like.
When Julia Jones takes up the baton of the relay and continues with her account, she not only describes the physical aspects, but also the nuanced and often abstract elements of care that the role of carer entails. She describes the reality of life with her mother’s diagnosis of dementia, offering the reader a glimpse into her personal story. A nautical theme runs through the book to cleverly illustrate the journey of all those involved in ageing care. In describing how dementia has affected their lives, Julia Jones dismisses the word ‘journey’ in favour of a ‘voyage’ where the crucial difference is that one can harness support and help to sustain the ‘crew’ for the long haul and travel together. She acknowledges that being a lone carer is burdensome for the person living with dementia, as well as the carer.
There are discussions on gains as well as the losses resulting from their changed relationship. The reality of the continuing responsibility which never leaves her. The so called ‘free time’ away from directly providing care and support is balanced with poignant reflections of how the experience has given added meaning to her life. Watching the falling leaves and the changing seasons will never be the same again after experiencing it through the eyes of her mother.
The changing landscape of older person care is exemplified by language. Allingham talks of ‘a care’ when describing the virtues of a carer. This reminds the reader that much of the language we use today simply wasn’t around then, but has evolved as older person care has become more commonplace. It is also fascinating to read how Allingham relates the wonders of the newly created NHS, marveling at how all manner of equipment and services were available, much of which is now seen as part of the usual landscape of healthcare.
As well as the differences, there are similarities threaded through both stories which have stood the passage of time. For example concerns over finances and material necessities such as balancing care, whether for children or parents, are acute concerns for carers of today. Likewise the relay, or handover from one generation to the next, is underpinned by the importance of all generations to be well cared for. The vital importance of environment, belongings, company, fresh air, all remain the same; as do the concerns of family delegating care. The principles underpinning the ‘tips and hints’ on successfully employing a carer still hold true today. It still remains a challenge to appoint a competent, suitable and appropriate person for the job and underlines how love, kindness and caring never go out of vogue in dementia care.
The book serves to remind us that the dangers of frail old age and illness do not change. The risks do not diminish or disappear in the face of advances in technology and healthcare. Falls, incontinence, and pressure ulcers are as dangerous to frail older people now as they were then.
What a treat to read this book for me as a registered nurse I felt privileged to be allowed access to both accounts. It reinforced my belief that we have a bridge to build across the chasm which yawns between the position of carers and healthcare professionals, as we each operate within our preconceptions of the other. Strategies I particularly enjoyed reading about in the book were when Julia Jones would receive a call from the care home in an attempt to help settle her mother whose distress was exacerbated by her forgetfulness. In my role as Staff Nurse I have frequently telephoned relatives to do the same, often worried that I was being a nuisance and feeling somehow a failure, my job being to bravely care for their loved one. This illustrates how marvelously shared care can work as the whole ‘crew’ pull together to steady the often rocky voyage of dementia.
The oft-unheard voice of the carer echoes through the book with reference to the work of Atul Gawande and Tommy Whitelaw. It raises important issues faced by carers and acknowledges the phenomenal amount of unpaid care which is delivered every day by relatives. I hope it will not take another 50 years for the relay to recognise the importance of ‘mutually respectful partnership’ described so eloquently in the book. I hope that John’s Campaign will have achieved its goal well before this time, that of welcoming the carers of people with dementia whenever the patient needs them, when they are admitted into hospital.
Julia Jones draws comfort, strength, and inspiration from ‘The Relay’ to face such questions as ‘how can I survive tomorrow?’ in the face of her mother’s unrelenting march of dementia, and the cruelty it can unleash. Maybe in another 50 years the relay will have moved towards answering this enigmatic question and the things we see as commonplace will include seamless partnership working.
I hope we don’t have to wait that long.
In the meantime, as we work together to find a solution, I am optimistic that that others who are touched by dementia can draw comfort from this gracefully articulate narrative.