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Life & Death

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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

The Wild God we can't coerce

Weird and increasingly encountered beyond the wilderness.

Belle Tindall

Belle is the staff writer at Seen & Unseen.

A pianist raises his arms while sitting at a grand piano amid recording equipment.

Nick Cave recording Wild God.

nickcave.com

Christianity is a wild thing.

I say this, even while only half-understanding what I’m saying. It’s something that I’m learning. Or perhaps it’s more appropriate to say that it’s something that I’m unlearning. Because, admittedly, I’m far more familiar with a somewhat domesticated view of my own faith tradition. The kind that allows me to fashion fences out of my expectations; to put parameters around God’s presence and boundaries upon his behaviour. Both of which are a farce, of course - but a comforting farce, none the less.

You see, there is nothing ‘comfortable’ about a God who cannot be wholly predicted or comprehended, let alone controlled or contained. A wild God is always going to be a challenge to a culture that has enthroned comfort. We’re too easily spooked and too unused to the sensation of being cosmically baffled.

But, affronting as it may be, I am trying my best to sit in the knowledge that the God I believe in is a wild God. And I’m finding this wildness increasingly hard to ignore. Perhaps it’s all the Rowan Williams I’ve been reading, or my newfound interest in the Romantics (as in, the eighteenth and nineteenth century poets, not the 1970’s American rock band). Or maybe it has more to do with Nick Cave and the Bad Seeds’ new album, which I have been listening to relentlessly over the last week.

In this musical offering, Nick Cave introduces us to his ‘Wild God’, who I think is my God too. It’s just that ‘wild’ has never been the first adjective I reach for when describing him.

Until now, I suppose.

Let me clarify what I mean by wild, because what I’m not saying is that God is inherently chaotic, unruly, reckless or irrational. Wild Gods, as we know them from the myths and legends, act on tempestuous whims, and are more than a little havoc prone. They are perilous, largely because one can never truly know where they stand with them. That couldn’t be further from what I mean. The entire Old Testament - as complex, nuanced and masterful as it is - can be understood as a collection of ways in which the God at its centre is saying – this is who I am, this is what I desire, this is what I’m going to do, this is where you stand with me. If you were to read the Bible, it would become pretty clear pretty quickly: God is insistent that those who seek to know him will never have to second guess him. God’s wildness does not mean that we cannot know the essence of who he is or how he feels towards us. I like to think that we can endeavour to know him accurately, but never exhaustively.

Rather, what I’m trying to get my head and heart around is the knowledge that God, and therefore Christianity, cannot be wholly domesticated. Despite my best efforts, it cannot be made into an entirely comfortable and cozy thing. To make it so, one would have to dilute it, shrink it, bleed any truth out of it. In his poem - Sometimes a Wild God -Tom Hirons writes,

Oh, limitless space.
Oh, eternal mystery.
Oh, endless cycles of death and birth.
Oh, miracle of life.
Oh, the wondrous dance of it all’.

There’s an innate weirdness to the Christian worldview, a pure wildness at the heart of it. It’s brimming with mystery and mysticism. As Hirons hints, it’s bigger and more consequential than our comfort-zones would like it to be. And, what’s more, much of it is communicated through the natural world. Biblical narratives and poetry are endlessly pointing us toward the places and spaces that are outside human cultivation – the stars, the mountains, the oceans – the things that pre-date and will outlive us.

Christianity is wild in that there’s an alluring organic-ness about it. Its truth sits beyond human manipulation and coercion.

For millennia, whole lives have been given over to this truly wild and, I believe, wildly true story. Can I give you just two recent examples? Two people who have (utterly unexpectedly) adventured their way into this wild and wonderful way of seeing the world? Two people I’ve had the joy of learning from over the past year?

First up is Paul Kingsnorth.

Paul is an award-winning poet and a best-selling author of both fiction (including the Buckmaster Trilogy: Wake, Beast and Alexandria) and non-fiction (including Real England, Confessions of a Recovering Environmentalist and his ongoing Sub-Stack series: Abbey of Misrule). He is, and always has been, an advocate for treating the natural world as if it were far more than a machine to be used or a resource to be obtained. Such behaviour is, according to Paul, nothing short of sacrilegious. As well as an enchantment with what he can see and sense in the natural world, he also has a long-standing fascination with all things mystical.

Buddhism, Witchcraft – you name it, he’s tried it.

He told Justin Brierley and I the story of how he his adventures have led him to arrive at the wildest possible destination: Christianity.  

And then there’s the renowned mythologist, Dr Martin Shaw, who decided to do a 101-day wild vigil in Dartmoor. Despite not being a Christian, on the very last night, he prayed. While praying, he looked up and saw something utterly unexplainable, something ‘properly Old Testament’. And that was it – after a night of dancing, several other ‘odd’ experiences, and eighteen months of deep pondering – he was able to say, ‘I went into the forest expected to be wedded to the wild and I came out wedded to Christ’.

Thinking about it, it’s probably no accident that ‘Christianity’ began on the margins, and from there, worked its way into the cities. There was a time where the prediction of Jesus’ arrival was being yelled out into the countryside, so loudly that people were emptying the surrounding towns to come and hear more. A time when rumours of redemption were being whispered in the rural hills. A time when its chief messenger was an inexplicably weird man named John the Baptist; who shunned his prestigious priestly heritage to live in the wilds, to dress in camel skins, to eat honey and insects and insist upon the imminent coming of the long-awaited Messiah. This Messiah, by the way, who would be born where animals are kept, sleep on mountains, retreat into deserts, walk on water, speak to storms, and break people (including himself) out of stone graves.

You see what I mean, Christianity is a wild story to believe and live in accordance with.

It’s the story that drove the ‘Desert Mothers and Fathers’ of the Third Century AD to reject civilisation and all its comforts, in order to seek God in the silence and solitude of the desert. It’s the story that is still inspiring people to live in caves on Mount Athos, secluded islands just off the coast of Wales and forests in the heart of Ireland. An uncontainable message has, since its inception, been lived out in uncontainable places.

Honestly, you want weird? Christianity can darn-well give you weird.

Don’t be fooled by over-familiarity or be swayed by that pesky left-side of your brain, the part that wants to convince you that you know all that there is to know. Christianity is a story that I, myself, had forgotten was quite this wild.