dementia « neverimitate

This review was written for and first published by Bookmunch.

“Whenever Peter and his mother argued, part of him believed that if he just found the right words, his mother would understand and everything could be resolved”

An increasing number of books are being published, fiction and nonfiction, that explore aspects of clinical conditions indexed under the label of dementia. An aging population means more people will have to live with this debilitating disease – as patients and carers. Most literature I have read on the subject to date focuses on the patient, perhaps with the aim of providing comfort or elucidation to carers. Relatives, in particular, of those whose brain function is deteriorating can come to feel guilty and alone as they struggle to remain calm when dealing with what feels like an onslaught of personally targeted vitriol. They may know logically it is the illness talking but such attacks, often repeated and denied, come through as perceived criticism of necessary interventions and can be challenging to take.

Travellers to Unimaginable Lands documents the author’s personal experience alongside case studies they have worked on as a counsellor to caregivers. Kiper explains why a healthy human brain will naturally struggle to deal with someone whose cognitive functions are being eroded. In clear and persuasive language she details how humans are psychologically programmed to expect certain behaviours, and if these are not forthcoming there will be stress reactions. Loved ones can cause deeply felt upset as they use shared history and long running reproofs as weapons drawn from within their illness.

“when caregivers are yelled at, lied to, ignored, unfairly accused, or not recognized, how can this not affect their sense of self?”

Also examined is how the mind processes memory. Just as there is an orbital blind spot of which most remain unaware, as the brain fills in the gap and vision appears complete, so memories are rebuilt each time aspects are recalled – and can therefore differ over time. The roles of conscious and unconscious decision making are discussed, something that enables a dementia sufferer to conceal symptoms of their illness, especially in situations they have long performed within such as social or work contexts. We all like to feel in control yet are often driven by reaction rather than considered action.

“what makes the self truly sneaky is that it believes itself impervious to outside influences, whereas in fact it collapses all too easily under the weight of social pressure”

The various case studies explore why a patient may behave in certain ways. An individual’s actions and arguments often stem from their life experiences although this may be masked by how the illness manifests. Carers’ reactions to situations they have struggled with are then delved into by the author. Knowing it is the disease driving behaviour will not always be enough to prevent the healthy brain reacting as comes naturally, often resulting in deep feelings of guilt.

The psychology of care giving proved fascinating to read as did the explanations of why interactions with dementia sufferers can be so challenging. One niggle I had with the case studies was the author’s habit of describing how a client looked – their body shape and eye colour. This felt irrelevant compared to state of mind, skill sets and the reasoning around occasional breakdowns.

Mostly, however, this was an interesting angle from which to explore a growing problem that garners much overt criticism from those as yet unaffected.

Any Cop?: A worthwhile and accessible read both for carers and those who may not understand the pressures under which these often underappreciated workers must somehow find ways to survive the loss of a loved one who continues to live.

Jackie Law

A Little Unsteadily Into Light is a collection of fourteen new short stories that were specially commissioned for this anthology. Each explores the experience of living with dementia but from a variety of perspectives. It grew from a project being run by a small team of academics at my alma mater, Queen’s University, Belfast. The team also included a practising writer, Jan Carson, whose role was to ensure the research had a meaningful impact on the wider community. She read widely to familiarise herself with fictionalised accounts of dementia already published. As she writes in her introduction:

“I soon realised there was a distinct lack of diversity in the dementia novels and short stories which have so far emerged. This anthology … is a small attempt to redress the existing balance of dementia fiction.”

While this academic background is of interest, not least because it provides the promise of authenticity in character portrayals and development, the collection offers stories from both emerging and established writers that are, quite simply, a pleasure to read. So many people, including myself, have been touched by this distressing illness and, within these pages, will find resonance. As well as carers, friends and family members, voice is given to the patients. Not all of them were nice people even before diagnosis, although some hid this well. It is also made clear that dementia does not just affect the elderly, or the white middle-classes.

The first story, This Small Giddy Life by Nuala O’Connor, focuses on two sisters, Sharon and Imy, whose mother has recently died with dementia. Their upbringing was peripatetic leading to feelings of resentment towards their single parent. Imy now lives in Spain and left Sharon to provide whatever care their ill mother needed. Feelings of duty, if not love, are not always shared by siblings.

Downbeat by Chris Wright also features two sisters who do not always agree on the care they should provide for their ill father. The man can be difficult to deal with as he attempts to assert agency. Caring for him is stressful, affecting the sisters’ home life – including a husband trying to be supportive but also requiring attention for himself.

Some stories are set in care homes where staff must deal with those in the later stages of dementia.

Our Dear Ladies Have Outnumbered Us adds a touch of humour when a well ordered facility faces disruption in the form of a spirited new resident.

Fingerpost by Mary Morrissy explores how the illness can affect lifelong friendships when normal social filters break down.

“Was this the illness talking? Or was this what Delma had felt all along?”

Immurement by Sinéad Gleeson features an attentive daughter – turning to sex and alcohol as coping props – whose mother now talks critically of her as if she is not there.

“A good girl. Had loads of potential but messed it all up. And she’s putting on weight now too”

Some of the authors adopt slightly surreal approaches. A New Day, Tomorrow by Henrietta McKervey explores memory and loss. The Portal by Caleb Klaces uses a story within the story to show a young man how an older one views his world.

Children looking after ill parents reflect on their relationship over time, how damage caused by words or attitudes has cast shade over decades. Coming and Going by Paul McVeigh was particularly poignant, especially around the time the protagonist came out to his parents.

“My sister told me that I had no right to tell him and Mum. That it would be selfish of me … It was exhausting pretending to be someone I wasn’t.”

Caring for a relative with dementia requires that lies are gone along with to avoid upsetting the patient – pretending to share what is their current reality.

Of course, not all the families featured are fractured. The final story, My Way Home by Caleb Azumah Nelson, has two siblings willingly caring for their father in shifts, with occasional crossover.

In the Afterword, Jane Lugea writes of the research project and how information was gathered.

“The most significant thing I learnt is that creative writing offers ways of understanding dementia that medical factsheets, media representations or casual conversations cannot.”

In offering the reader such a wide variety of fictionalised experiences, this anthology provides an understanding of behaviours – which some actively embrace while others find they need to walk away from. Just as the ill are individuals with personalities and differences, so too are those whose lives they have affected, before and after diagnosis of dementia.

A fine collection of short stories that happen to have a theme of living with dementia. It will foster empathy in the reader, and that is vital if society is to help the growing numbers who will come to need it.