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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Creed

Death & life

1 November 2023

5 min read

The lost art of dying well and what we can learn from it today

Living well in order to die well doesn’t simply happen. It takes work. It takes preparation. For All Souls Day, Lydia Dugdale asks if we are prepared for death.

Lydia Dugdale

Lydia Dugdale is the author of The Lost Art of Dying. She is Professor of Medicine at Columbia University and Director of the Center for Clinical Medical Ethics. She is a specialist in both medical ethics and the treatment of older patients.

A medieval book illustration of a person dying in bed.

A 15th Century ars moriendi, or ‘art of dying’ image.

Basel University, via WikiCommons.

The first of November marks All Saints Day on many church calendars—a day when we Christians remember our martyrs together with all the faithful, both living and departed. On that day, we celebrate that our communion is not simply with one another on earth but is also with all saints of all time, including those who have died.

For some people, the notion of fellowship with departed saints might be quite exciting. They may have pondered questions about the saints since school assemblies or RE lessons. What was racing through Abraham’s mind when he attempted to sacrifice his son Isaac? What would Mary say a sinless Jesus was like as a toddler? Did Jonah float around inside the great fish, or did he find something on which to perch himself?

But others among us might wish to skip All Saints Day altogether. Talk of dead saints feels positively medieval, even a bit morbid. Some of us might wonder about our own saintliness—or lack thereof. Could we really experience ineffable joy in an afterlife? Moreover, the very suggestion of an afterlife implies that we ourselves must die—an uncomfortable prospect for most of us.

Such divergent reactions to the day are revealing. On the one hand, the idea of having saints to remember is to inspire us to live well. They invite us to examine their lives and to grow ourselves in response. On the other hand, they remind us that our days are numbered. And because our days are numbered, we should attend carefully to what it means to live wisely. Saints teach us that if we want to die well, we must live well.

But living well in order to die well doesn’t simply happen. It takes work. It takes preparation. Which is why this year on All Saints Day it’s worth asking the question: Am I prepared for death?

Death exists as a paradox for Christians—as something at once lurking and vanquished.

In the late Middle Ages, the ars moriendi, or ‘art of dying’ genre of literature developed in response to mass loss of life from a fourteenth-century outbreak of bubonic plague. The genre consisted of a number of handbooks on how to prepare for death. Although the earliest text was anonymous, historians believe that its authorship had a connection to the Western Church. After the Reformation, Protestant versions began to circulate, and later handbooks omitted religious particularity altogether. The handbooks grew in popularity throughout the West for more than 500 years.

This notion of living well to die well lay at the core of the various iterations of the ars moriendi. Early texts warned readers that five temptations lead to dying poorly—temptations to doubt, despair, impatience, greed, and pride. If you don’t want to die a doubting, despairing, impatient, greedy, and proud person, you must cultivate the virtues of faith, hope, patience, generosity, and humility now. But the ars moriendi texts were very clear that virtue did not happen to a person all at once at the end of life. Rather, it required habituation. Cultivating virtues was the work of a lifetime. If you want to be remembered as a person of sound character, a generous person of hope and good will toward others, you cannot delay making such attributes a regular practice. If you are willing to be martyred for your faith—as some of those early saints were—you have got to be sure it is a faith worth dying for.

I once met a man who had converted from the religion of radical self-centeredness to Christianity. When I asked him why, he told me that of all the world’s religions, Christianity had the best story. As with the martyred saints, it was for him a story worth dying for. And All Saints Day reminds us that in Christianity, death is stranger than you might think.

Death exists as a paradox for Christians—as something at once lurking and vanquished. Death is the enemy that at long last will be destroyed, and death has already been swallowed up in victory. But you might ask: if death has already been defeated, what remains to be destroyed? And if death will be destroyed, how has it then been defeated? This enigma might partially explain why many regular church attenders are neither physically nor spiritually prepared for death. Researchers at Harvard University have shown that people who describe themselves as most supported by their religious communities are also most likely to reject hospice care and instead to elect aggressive life-extending technology.

The story goes as follows. Death is an enemy because it suggests rejection of God. From the beginning, God tells our forebearer Adam that he can freely eat of any tree in the garden but one. If he eats from the tree of the knowledge of good and evil, he will die. Thus, from the beginning, God equates the possibility of human disobedience with the actuality of death.

Of course, Adam and Eve eat the proverbial apple. And when they do, they don’t immediately die, but they experience a sort of death. For the first time, they become filled with shame and fear. They hide themselves from God. They cast blame. God tells them that moving forward their life will be filled with great suffering. God says to Adam, ‘By the sweat of your face you shall eat bread until you return to the ground, for out of it you were taken. You are dust, and to dust you shall return.’ Disobedience is what Christians call ‘sin’—and it brings death. Sin severs that once harmonious relationship between God and people—a fact that also grieves God, which is why God does not let death have the final word.

The story gets better. Since we humans cannot possibly undo the drastic results of our disobedience, God becomes fully human in Jesus Christ, so liable to death, while also retaining full, divinity which cannot die. Then, as a human on a cross, he dies as the ultimate sacrifice on behalf of humankind. But this God-Man does not stay dead. After three days in the tomb, Christ is resurrected, defeating death, on what has come to be known as Easter Sunday. Christ’s resurrection functions as a sort of guarantee that all God’s people will one day be resurrected and receive new bodies, that day on which the great enemy of death will be destroyed once and for all. If Adam and Eve brought death into the world, the resurrection hope is that death will be no more.

This year on All Saints Day we have the opportunity to consider what it means to commune with ‘all saints’ extending back to Adam and forward to future generations. We have the opportunity to study the saints and then examine ourselves. What sort of people are we becoming? Are we living well to die well, as the ars moriendi handbooks teach? And of all the stories out there, which provides the greatest hope in life and in death?

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