Letter from Burnley: the shifting sands of the cost of living crisis

With a worsening crisis affecting his community, Alex Frost reflects on the growing struggle and the impact on its people.

Alex Frost

Alex Frost is a vicar in Burnley, Lancashire, and an advocate for the local community.

Two older men lean agains the wall of a football club's entrance, next to thin open doorways.

Burnley football club turnstiles.

Have you ever watched one of those retrospective television programmes, that takes us back to the 1980's or 1990's? They usually include clips of Wham or Oasis or Yuppies with massive mobile phones.

I don't know about you but the label 'The cost-of-living' is one that I suspect might take its own place in one of those shows twenty or so years from now. And I do wonder if things will be better or worse than they are presently.

You might that hope which ever political government of the day is in power in 2044, the cost of living crisis and poverty will have significantly shifted from where they presently are.

In my own town, Burnley in Lancashire, the shifting sands of such matters are starkly evident, and things seem to be getting worse rather than better. The evidence of a cost of living crisis has shifted matters from financial insecurity to many other areas. For example, within the cost of living crisis sits another crisis that appears to be getting more concerning as the months go by and we drop into the harshest months of the year.

He cites places of refuge as dangerous, violent, volatile places that are not in keeping with his desire to live a quiet and normal life that befits a gentleman in his late fifties.

That crisis is one of extremely worrying mental health issues with adults and some very young children in our community. On a personal level, there is nothing more painful than taking a funeral service for a young person who has taken their own life, which happened to me in recent months. Alongside such sadnesses, there are almost daily examples of individuals, many of whom are young mothers pouring their hearts out on social media with woes of poor mental health with seemingly nowhere to turn. In my own borough the mental support provision within the NHS is at breaking point with long delays for mental health counselling and support. Thank goodness then for the voluntary sector who help me to help others on a regular basis. After the pandemic of COVID in Burnley, where a recent Joseph Rowntree Foundation poverty report suggested 38 oer cent of children in Burnley live in poverty, we are in a battle to keep our most vulnerable people mentally well and with an optimistic outlook for a brighter future.

And then there is the matter of homelessness. Who'd have thought we'd be living in a time when people are now being evicted from a tent? And what about those who lived outside for many years - what are we to do for them? There is a chap in Burnley, who by choice is living rough behind our corporation cemetery because the accommodation offered to him would place him in a hostel where addiction and violence is commonplace. The only blessing to be taken from it is that he has found a warm spot and he is relatively safe against the winter elements that are coming our way during the winter. But the saddest thing about this gentleman is that it is a preferable option to what is offered were he to use the provision available. He cites places of refuge as dangerous, violent, volatile places that are not in keeping with his desire to live a quiet and normal life that befits a gentleman in his late fifties.

Watching young mums literally gathering up the crumbs from our food provisions at church is a chastening and humiliating experience for them and those who serve them.

And as the sands shift, what about our young people? In the school where I am a governor, 58 per cent of our children are on free school meals, and many come from broken homes and difficult circumstances. What encouragement can we give them to ensure their young lives are ones of opportunity, fun and learning? What can we do to ensure the struggles of the children's parents don't bring their own development to an uncertain and worrying future? Some parents in the grip of a cost-of-living crisis lose their filter on vocabulary and so every worry, concern, disappointment and crisis is shared. Shared with little boys and girls who shouldn't be constantly subjected to a world that is always churning out negative scenarios on their innocent and immature minds.

And what about the national celebration of a food bank and community kitchens and all they do for the poor people of our parishes? Three cheers for the voluntary sector who take the strain of a failing social security system that gives food with one hand but potentially snatches self-worth with the other. Watching young mums literally gathering up the crumbs from our food provisions at church is a chastening and humiliating experience for them and those who serve them. I hate foodbanks, not because of the good they clearly do, but, because they normalise and hold up a failing social security system in our country today.

As we approach Christmas and a new year, I wonder how the shifting sand of the cost-of-living crisis might influence, our cultural horizon? Is it idealistic, romantic or downright stupid to think we might change the great and mighty to think differently in their approach to poverty? I am keen football fan, and you might be familiar with the term 'He/She talks a good game' and after many years following Burnley Football Club I have witnessed on many occasions when Managers have talked a good game but sadly failed to deliver on the field of play. And I think that is true of the majority of our politicians of all parties. They can talk a good game but often fail to impress us because the substance doesn't match the sentences.

I am convinced through many years of dealing with abject poverty, that people in difficulty respond better to compassion over criticism, understanding over instruction, reality over rhetoric. So many people in my context don't want to be in poverty. They would prefer not to struggle, and they would recognise they need help. The shifting sands of surviving should encourage society to prioritise people before pedestrianisations of town centres, and hope over HS2 railway lines. As the sands of our landscape continue to shift, it surely must be the priority of the church, the government, and for people to stop people from sinking in a swell of poverty and hardship. When it does that, perhaps the church can demonstrate to the society, its role and its mission still has much to offer in 2024 and beyond.

Article

Ageing

Care

Change

Death & life

20 September 2024

6 min read

A Tolkien poem helps a nurse understand the ravages of dementia

'Not all who wander are lost.'

Helen Cowan

Helen is a registered nurse and freelance writer, writing for audiences ranging from the general public to practitioners and scientists.

An elderly woman wearing headphone looks up and to the side with a big smile.

Playlist for Life

Not all who wander are lost.

Often written on a care home wall, on an inspirational poster, these words are usually set against a forest background, or compass, for added effect. They have also been used as the title of a conference paper discussing so-called smart trackers for people with dementia, whilst, Not all who wander need be lost is the title of a concise guide to navigating the heartbreaking challenges when a loved one is diagnosed with Alzheimer’s disease or other dementia.

As a care home nurse for more than ten years, I have seen residents wander - not lost but “walking with purpose”, as it is sometimes known in the caring community. “Nobody gets up and walks without a reason,” says Suzanne Mumford, Care UK's Head of Nursing, Care and Dementia; perhaps they are easing pain, or boredom, or looking for something that they can’t describe. I remember residents exploring, enquiring into self-made mysteries solvable only by themselves, examining everything from door handles to another resident’s buttons, even escaping with surprising speed. Walking with them, often in silence, can bring a sense of relief, comfort and companionship.

What I didn’t know was that this is a quotation from a poem by JRR Tolkien, published in The Fellowship of the Ring seventy years ago. The actual line is - “Not all those who wander are lost”.

All that is gold does not glitter,
Not all those who wander are lost;
The old that is strong does not wither,
Deep roots are not reached by the frost.

From the ashes a fire shall be woken,
A light from the shadows shall spring;
Renewed shall be blade that was broken,
The crownless again shall be king.”

We first hear this poem in Chapter Ten of Book One, as Frodo reads it in the postscript of a letter from Gandalf. As I read it, the imagery of being lost, withered, frost-bitten, in darkness, burned and broken, speaks something, in poetic picture language, of the ravages of dementia, the harrowing losses, the valley of tears. It brings to mind residents unaware of familiar objects or surroundings, looking straight through loved ones without a flicker of recognition, losing also language, continence, mobility and the ability to swallow.

The TV presenter Fiona Philips recalled an agonising decline in her mother as she succumbed to Alzheimer’s, describing how, in the final stages, her mother “spent whole chunks of time just sitting and staring ahead, only able to give out a series of sounds”. Fiona herself now lives with dementia. “'It’s devastated my family and it’s the biggest health and social care challenge we face as a country,” she says.

I once interviewed retired doctor Jennifer Bute, who lives with dementia. She talked of time travel (perceiving herself as living in a time from her past); disorientation to place and person; frightening hallucinations when old memories are seemingly ‘unlocked’; and ‘emotional unzipping’ when agitation and anxiety increase, often in the late afternoon or evening in something poorly understood as a symptom, known as ‘sundowning’.

Yet there is something more to this poem – each of the pains has a promise – not all who wander are lost; the old that is strong does not wither; and, most poignantly, deep roots are not touched by the frost. In dementia, it is true that deep roots are untouched, that an enduring aspect of a person’s identity never truly withers, though it may be mostly unseen. Something remains. Oliver Sacks the famous neurologist emphasised that, even in the late stages of Alzheimer’s, the person is still ‘alive inside’ (the inspiring documentary with this title is recommended). In stunning real-life stories, he has shown how music appears to ‘call back the self’, awakening moods, memories and thoughts that had seemingly been lost. He refers to music’s extraordinary ‘neural robustness’ and describes one man, unable to tie his tie or find his way to the stage, yet able to perform a perfect piano solo. In one life-affirming, must-watch, tear-jerking video, gospel music was shown to enliven, calm, focus and engage a man simply known as Henry.

Watch Henry

Singing can “provide islands of arousal and awareness like nothing else can”, according to Alicia Clair, Professor of Music Therapy. I’ve seen singing bring the person into the present for a passing moment, illuminating a face that seemed far away. One otherwise-silent lady completed the chorus of ‘Daisy, Daisy’ before descending into dementia again. Others have laughed, clapped, danced, embraced and even shed a silent tear during music therapy sessions, when music elicits memory. Doll therapy meanwhile has sometimes restored and revealed a sense of nurture, purpose, care and pride, with residents feeding their new friend before accepting their own food, folding its clothes and taking care of it cradled in their arms. Though it divides opinion, a doll can preserve dignity if it de-escalates agitation or engagement in physical or verbal abuse; a sense of dignity also comes from the person being able momentarily to give care rather than receive it.

“From the ashes a fire shall be woken, A light from the shadows shall spring; Renewed shall be blade that was broken,” continues Tolkien's poem, and, though not the original intention, these powerful images of renewal and restoration paint a picture of something known as “paradoxical lucidity”, or unexpected cognitive lucidity and communication in some patients with severe dementia, especially around the time of death (though sometimes long before).

Anecdotes are recorded of “unexpected, spontaneous, meaningful, and relevant communication or connectedness in a patient who is assumed to have permanently lost the capacity for coherent verbal or behavioral interaction due to a progressive and pathophysiologic dementing process”. Some scientists are seeing them as a paradigm shift in the understanding and perhaps even treatment of dementia. I will never forget when a woman in the late stages of dementia, with little spoken language, was brought back to the nursing home weeks after hospital admission; she had been perilously ill. With bright eyes, she took my arm and, as if the mist had cleared for a moment, spoke warmest words of thanks to me for helping her on the day she collapsed. In another fleeting and irreproducible moment, a lady wished me happy birthday, before continuing her silent walk around the home. Witnessing such an event is ethically and emotionally transformative.

The concept of remaining ‘alive inside’ even when abilities, language and memory are eroded by dementia is taken to the next level in Christianity, which teaches that life continues even after death itself. The Bible speaks of new life beyond the grave; the fire shall be woken, a light shall spring. And there will be a crown (and the gold will glitter). The Crown of Life is referred to, being bestowed upon "those who persevere under trials." Dementia is one of life’s severest trials; a cross to bear. In the 1912 hymn “The Old Rugged Cross”, another cross is spoken of, being the cross of Christ at his crucifixion. Clinging to that cross, living out a Christian life, the hymnwriter wrote of “exchanging the cross for a crown” at life’s end. After ashes, hope awaits the Christian.

Playlist for Life is a charity encouraging people to create playlists for people living with dementia.

Playlist for Life