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.

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17 June 2024

5 min read

Reading together helps us read our own lives better

The rush and tumble nearly squeezes the life out of the clock’s second hand.

Jessica Brown

Jessica is a researcher, writer, and singer-songwriter. She is studying at Trinity College Dublin, and is an ordinand with the Church of Ireland.

A painting shows two 19th century women in a carriage, one reading as the others snoozes.

The Travelling Companions, Augustus Egg.

Birmingham Museums Trust on Unsplash.

Even ordinary days seem to have frantic edges. A friend of mine, a salesman and father of four teenagers, said the other day that it felt like he was the hamster in the wheel, but so dreadfully exhausted, he’s flopped over, thumping around as the wheel keeps spinning. If we put a finger on the pulse of our current cultural desires, one pulse would be the longing not only for rest — spots of digital fasting or a day hiking — but an overhaul and renewal of what we’ve done with time. Yet it is difficult to know how to slow down, and it often seems that our attempts for self-care and being intentional are not enough to register that desired sense of slowness.

If we managed this, we would not just be able to slow down, but we would figure out how to bring our experience — the texture, the feel — of our paced lives into something like healing. The rush and tumble of a normal day nearly squeezes the life out of the clock’s second hand, and far too often, most of us reach each evening in some state of exhaustion.

Speaking from my own story, a shift happened when we moved from Los Angeles (which was, to be fair, a great place for us until it wasn’t) to East Clare in the Midlands of Ireland. It was a shift that my whole being needed—needed at a limbic and somatic level, in the spiritual self, as an artist, for family dynamics, and for my partner, a sense of freedom in work. It wasn’t that we merely got more time in our day: it was that our immersion in time, our soul’s experience of the clock, found an ‘easing up’ that — though the daily round is still arduous enough — afforded a little more time in every direction to breathe, think, walk, write; be.

It’s been in the wake of this move, nearly eight years ago now, that I’ve pondered why it felt that the hills here gathered me up into their arms and helped me to actually slow down. Is it these hills, the lovely stretches of variant greens and the countless walking paths hidden among them? Is it the congregation of artists — local artists, who refashioned my ideas about artistic success, inculcated as I was into seeing it as only with a large following? Is it the deliberate decisions to keep family overheads as low as we can, freeing up a bit of time from the understandable and ongoing need for wages?

Among the many reasons for the shift in how I experience time — for the sense, not just of slowing down, but of time affording more space — is the grace of reading with others.

The pastor, physician, and poet—this trio of us still are surprised by the deep, serendipitous connections that our poems make, week after week.

In fact, before this shift there was the keenly disappointing realisation of how little time in the land of adulthood could be set aside for reading. In the last few years, though, the regular habit of reading in companionship has grown into one of the most structural elements of my week. With Monday evening comes lectio divina, an ancient Christian practice for reading scripture in an authentically ‘listening’ way. Two lovely pals from town and I meet (often over a WhatsApp call, but sometimes in person) to read together a passage from the Bible, usually what will be read at a service the following Sunday.

On Monday night, my brother in Texas and I unpack whatever book we’re reading at the moment. We started with Tom Stoppard’s Arcadia, went onto Michael Foley’s School of Life book on Henri Bergson, and after a few more texts, are now reading the stunning poetry collection The Art of the Lathe by the Texan-Kansan poet B.H. Fairchild.

On Tuesday nights, I gather via Zoom with two other women—a minister in Connecticut and a doctor in Sydney; we met at an online course about Rilke in the winter of 2021, and still meet regularly, each bringing a poem to share and the stories of our lives as we’re living through the week. The pastor, physician, and poet—this trio of us still is surprised by the deep, serendipitous connections that our poems make, week after week.

I think too what happens in this reading companionship is that the muscles we use to attend to words together are the very muscles needed to read our own lives.

As these fellow readers and I weave together silence and articulation, listening and exploration, our time together edges eternity. In this, I think I glimpse how God works to redeem the violence we do to time. When we enter into the invitation to holy spaces—like time spent with the Bible, times in prayer, times of friendship—our usage of clock time becomes secondary to the content within that duration, and certainly secondary to the presence of others (be it the writer of the Gospel of John, Emily Dickinson, the Holy Spirit, or a friend down the road). Our experience of time becomes inflected by the psychological richness and the interplay of spiritual growth with another person or persons.

I think too what happens in this reading companionship is that the muscles we use to attend to words together are the very muscles needed to read our own lives. In this, we can suss out how the longing for slowness is an appropriate one and one to listen to. Using metaphors at hand, reading our lives with the modalities of dialogue, listening, and in-time discovery means that our longing for slowness can help us see that we’re looking for a waypoint, a stop along the road; or a few days at basecamp, patching up and cleaning worn gear; or a longer stretch of wintering in the plains before crossing the mountains; or a period of convalescence in a home by the sea. These images for rest, for pause and restoration, can help us see how to open to God’s care in our living narratives, care that seeks to renew and redeem our often grueling experience of time.

The special grace that reading companionship yields is not just the hour’s content that is spent in shared conversation, though this is nourishing and transformative in its own right. It is how this hour sets the context for all the other hours. The humble stance of reading with attention and cherishing the voices of others models a kind of immersed slowness for the rest of our personhood. At the end of the day, I think it’s a radical counterpoint to what we often ask of a day, an infusion of divine grace into the pumping vessels of time.