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

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Psychology

27 August 2024

5 min read

Recovery came softly

A vision of grace amid an eating disorder.

From Mockingbird

Mockingbird is an organization devoted to “connecting the Christian faith with the realities of everyday life."

Under a tree, backlit by a sun set, two people sit in chairs outside and talk.

Harli Marten on Unsplash.

This article, by Lindsay Holifield, first appeared in Mockingbird. Published by kind permission.

I turned sixteen years old in a lavender-walled bedroom on the eating disorder unit at Texas Children’s Hospital. Surrounded by eagle-eyed nurses watching my every move and whirring machines keeping me alive, I quietly transitioned to Sweet Sixteen. The unit’s charge nurse was a gruff woman named Lupe, and despite her job, she did not particularly like children. But it was my birthday, and in an uncharacteristic act of kindness, Lupe offered me a slice of cake. She must have briefly forgotten her surroundings, because I was not a normal teenager. I was a patient on a pediatric eating disorder unit, and I broke down sobbing at the mere thought of such a high-calorie food entering my body.

This was my first birthday in a clinical treatment facility for anorexia, but it would not be the last. After receiving the initial diagnosis of anorexia nervosa as a teenager, the doctor’s pronouncement sounding like a death-knell at the time, I would admit to twenty treatment facilities on separate occasions across a period of fourteen years.

The treatment staff began to greet me knowingly when I would re-admit after only a few months out, as though I was an old friend returning from vacation. “Welcome back, Lindsay,” they would say, as they took my luggage and inserted yet another nasogastric feeding tube. Over time, I began to be labeled “chronic,” and I internalized a belief that I was one of the sufferers who was fated to live the rest of my life under the oppressive weight of this struggle.

I would have to try harder. I would have to pull myself up by my bootstraps and willpower my way into recovery. After each attempt under this approach, I would fall flat on my face.

It seemed that no matter how much motivation I mustered up, this internal drive to self-destruct would not leave me alone. I desperately wanted to wake up each day without having to submit afresh to the hellish existence of self-starvation and running till my lungs felt on the verge of collapse. But I felt chained to this destructive cycle deep into my bones, despite my best intentions.

I was often berated by various treatment providers for not having enough motivation. I didn’t necessarily want to die, but I could not find the strength within me to fight off the voice in my brain that demanded self-destruction. Doctors and mental health clinicians made it clear that if I really wanted to get better, I would have to try harder. I would have to pull myself up by my bootstraps and willpower my way into recovery. After each attempt under this approach, I would fall flat on my face. The despair of my situation began to swallow me whole: there was no way out, because I could not yell at myself enough to make myself well.

Because of the lavish softness I was shown, I began to approach myself with greater softness.

I was twenty-six years old, and I was sitting in a green folding chair in the summer on a farm in Nashville, Tennessee. The woman in the folding chair across from me is decidedly in support of my recovery, but she isn’t yelling at me or giving me a stern lecture. Instead, she is explaining with great care and tenderness how much sense my struggles make in light of my previous life experiences. “Perhaps,” she says gently, “your brain was trying to survive great pain. Perhaps you were simply trying to make the ache go away the best way you knew how.” Her compassionate words break something open within me, and I start weep like a small child. No one has ever approached me with compassion like this; they are all afraid being too soft will simply enable me to further harm my body. But they are wrong. It is precisely this compassion and sense of being witnessed that softens my armored heart.

Recovery did not come overnight, but I can unhesitatingly say that the compassion of a woman on that farm in Nashville is what radically changed the trajectory of my life. Because of the lavish softness I was shown, I began to approach myself with greater softness. The voice of condemnation quieted, and I slowly turned from self-destruction to life.

Do you not hear the gospel ringing out here? My story of recovery is simply a zoomed in image of the grander story, the beautiful truth that makes up the fabric of our existence. Admitting powerlessness to destructive forces of sin and death is important, but the condemnation of the law will not save us. It is the extravagant, one-way grace of God that resurrects the dead.

I have heard similar fears in faith communities that I continually hear in my recovery communities: if we are too extravagant with compassion, we are enabling sin and destructive behaviors. But I am a living testament that compassion is what softens hearts of stone, armored up by self-protection and attempting to earn love through behavioral perfection. I would have died many times over save for the compassion that chased me down and embraced me, and being held in such tender kindness was the only thing that could have changed my fate. I believe this for mental health, yes, but more importantly, I believe this for the rescue of all of humanity. The grace of God is the sole agent of resurrection and change.

To the surprise of those who cling tightly to rigid, white-knuckling versions of recovery, my behavioral change occurred only after I was met with a grace without strings attached. This should not be surprising to Christians, however. Here again, the gospel glaring back at us, that repentance is a response to the kindness of God. This is the God who loved us while we were dead in our sins, while we were powerless to the forces of the world, the flesh, and the devil. Against our behavior-driven moral sensibilities, God offers us grace that is a free gift, compassion in its fullest expression, and it is the only thing that will bring renewal and healing to the inhabitants of this desperately aching world: minds, hearts, and bodies included.