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

Review

Comment

Culture

Death & life

14 August 2023

5 min read

'Do you guys ever think about dying...?' - Barbie

Pat Allerton reflects on the Barbie movie, the societal questions that it answers and the existential question that it doesn't.

Pat Allerton

Pat is vicar of St Peter’s Notting Hill and author of A Pocketful of Hope.

Margot Robbie as Barbie in Greta Gerwig's Box-Office smash hit movie

So I’ve just got home from watching the brand new and much acclaimed ‘Barbie’ at the cinema (don’t worry, I also watched ‘Oppenheimer’ last week). It’s 11pm, my wife and our 8.5 month old daughter are asleep upstairs and despite having church in the morning, I feel stirred to write some thoughts.

First and foremost, huge congratulations to Margot Robbie, Ryan Gosling, the whole cast, crew and team. It’s an absolute belter! Full of laughs from beginning to end. I thoroughly enjoyed myself and would encourage anyone else to go and see it.

But secondly, far from being the shallow, plastic cliché that you might expect, what you actually get is an intelligent, searing critique, albeit somehow gently done, of the world we live in and what’s predominantly wrong with it. Which is, you guessed it, men. Or more specifically, patriarchy.

The film begins in ‘Barbieland’ where everything is seemingly perfect, as encapsulated by Barbie when she describes the day we first meet her as, ‘the best day ever. So was yesterday, and so is tomorrow, and every day from now until forever.’ That is, until we meet Ken (played by the excellent Gosling). It is here that the first inkling of imperfection or wrinkle in their world is detected. As the narrator (voiced by Dame Helen Mirren) makes clear, ‘Barbie has a great day every day, but Ken only has a great day if Barbie looks at him.’ (We’ve all been there guys). His niggling insecurity and consequent competitiveness towards other Kens however, still aren’t enough to wake Barbie from her dream-like state and reveal that all is not well in paradise.

Issues of equality, respect, independence and identity are addressed in a way that left this 'pale, stale male' challenged but not condemned.

That moment arrives unexpectedly, during what appears to be a standard evening with ‘a giant blowout party with all the Barbies, and planned choreography and a bespoke song’ to which Ken is told he should ‘stop by’. The dance is breathtaking, the happiness palpable, and yet suddenly, as if from nowhere, Barbie blurts out the pivotal line in the film, the hinge on which the whole (Barbie) world turns, ‘do you guys ever think about dying?’ Cue the DJ’s vinyl record screeching to a halt, the choreography closing down, the dancers looking at her in disbelief, and the general sense of a serious buzz-kill. ‘Dying to dance’, she disingenuously adds, desperate to keep the party going, to shrieks of relieved delight and Dua-Lipa's return. Disaster averted, reality restored.

Except it’s not, it’s simply avoided. Avoided by everyone that is, bar Barbie. Something has changed for her, she knows it, and she must somehow find out why. That wrinkle in her world (along with the wrinkle on her thigh) turns out to be caused by a tear in the fabric separating her plastic world from the real one.

Long-story short, avoiding spoilers where I can, Barbie and Ken then embark on an eye-opening, perspective-shattering, journey from their world to the real world in order to find out where such unnerving questions (and cellulite) were coming from. Major issues with (or norms within) our world are encountered, from the objectification of women (Barbie receives immediate unwanted attention from all kinds of men), to the totally unmerited respect of any man (with someone even asking Ken if he had ‘the time’). They each go on an existential journey of discovery, with Ken delighted to learn that in the real world, men rule the roost (except for a brief time when he thought that horses did). Inspired with fresh vision, he quickly returns home in order to make some fundamental changes to and establish much of the best practice that he’s witnessed in patriarchal L.A.

I won’t say how things end up, but suffice it to say, issues of equality, respect, independence and identity are addressed in a way that left this ‘pale, stale male’ feeling both challenged but not condemned. Kudos to the team for getting that balance right! However, as big and important as these issues are, and as satisfying an ending as was reached from a social justice warrior’s point-of-view, it struck me that the biggest elephant of all was still left there in the room, or at least charging around on the beach. Because the very question that began her journey, the deepest one that woke her up, is the very one that’s just left hanging, unaddressed and ungrappled with.

The music stops and that is it. And yet don't our hearts long for more?

It’s almost as if that moment of existential angst on the dancefloor (and who hasn’t had one of them), realising the fragility of our own mortality, did nothing more than focus Barbie on the need to lay hold of everything she can in this life, rather than exploring the reality (or not) of the next. Our culture has a word for it. YOLO, if you didn’t know, standing for ‘you only live once’. Which of course is true, whether you’ve got faith or not. But the Christian worldview would go further, saying that whilst indeed you only live once, the Scriptures tell us that you also live forever (or YALF, to coin a phrase). Which sounds ridiculous on the face of it (the concept, not the phrase, although granted, YALF might not catch on). After all, as the creator of Barbie, Ruth Handler, tells us in the film, ‘ideas live forever, humans not so much.’

Unless, of course, they do, or can, which only our creator could possibly make possible. And so Ruth’s appearance raises another interesting question, if she made Barbie, who made Ruth? Only when we’re dealing with questions of this nature can we be positioned to take on the big mama (I was tempted to say ‘daddy’) question of, ‘do you guys ever think about dying?’ Which, of course, every one of us does. You can’t be human and avoid doing so. You’d have to be a doll in a made-up world.

But it’s a frightening thing to do, whether in Barbieland, in England’s green and pleasant land or anywhere for that matter. Because it all just looks so final. Like the music stops and that is it. And yet don’t our hearts long for there to be more? For one more song, for the beat to continue? Dare we hope for resurrection where life and light beat death and darkness? Because as beautiful as this life is, with all its opportunity for growth and freedom, be it in self-revelation and actualisation like Ken (the film ends with him wearing a hoodie that says, ‘I am Kenough’), or greater progress and equality on a socio-political level, experience tells us that until we have an answer for Barbie’s first and biggest question, then our own days here on earth, however good, happy and choreographed, will always be rudely interrupted by the reality of death and its long shadow. Find an answer for that... and let the DJ’s music play.