Article

Ageing

Care

Change

Death & life

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

Article

Assisted dying

Care

Creed

Death & life

19 November 2024

5 min read

“Shortening death” sidesteps the real battle

We need to do more than protest bad deaths, we need to protest death itself, it's more than biological.

Tom Dove

Tom is a physician and completing a theology doctorate.

A hand drapes over the side of an object out of shot.

Michael Schaffler on Unsplash.

What is “death”? It’s surprising the term has received little attention in the assisted dying discussion so far, because more hangs on the answer than one might expect. At a press briefing, Kim Leadbeater MP stated that the assisted dying bill she is proposing is about “shortening death, not ending life.”

But what meaning does “death” have here?

The current bill defines neither “death” nor “dying.” Granted, it implies a biological definition. The bill speaks of administering approved substances to “cause that person’s death” and of capacity and decision-making around “ending life.” These fit the understanding of death with which the medical profession operates—death is the point in time when the combined functions required for human life cease. It is a one-time event, the end of physiology, and so is recognised by a combination of physical signs.

Death, then, is a diagnosis.

So, too, “dying”—though here the waters are murkier. Setting aside sudden deaths, medical talk of dying takes us out of binary territory. Dying speaks of a process, of the “terminal phase.” Within medicine a diagnosis of dying heralds the expectation that a person’s death will occur within hours or days. And so, the focus shifts. The task of care is no longer the coordinated work of investigation, preserving life, and treating symptoms. Now attention is on bringing relief to the process of dying.

The bill seems wise to much of this. Though definitions of death and dying are absent, the bill does define terminal illness—“an inevitably progressive condition which cannot be reversed by treatment” and from which the event of death “can reasonably be expected within 6 months.” And so, it clearly distinguishes terminal illness from biological death and, implicitly, from dying.

Of course, terminal illness and biological death are related. Terminal illness is irreversible, and where terminal illness leads is death. Or, you might say, it leads to the end of life. Apart from the timescale of six months, the same may be said of ageing: ageing is irreversible, and where ageing leads is death. This is why Kim Leadbeater’s comment was puzzling to me. I suspect what she really meant was “shortening terminal illness.” If so, this is confusing because, within the framework of the bill, “shortening terminal illness” and “ending life” are identical. It seems she was getting at something else.

“It seems odd that in the name of eliminating suffering, we eliminate the sufferer.”

Stanley Hauerwas

I suspect Kim Leadbeater was echoing a conviction at home in the Christian faith. That is, try as we might to keep death at a distance and restrict it to a faraway frontier, the life of human beings involves death. I don’t simply mean the biological death we witness—the deaths of friends, relatives, or even strangers. I mean death intrudes upon the way we experience life. Death is more than simply biological.

The fear of death belongs in this category. For some, the impending loss of relationships and joys casts a shadow over life, giving birth to apprehension. Death is not simply a factual matter but something that exerts power and influence. Or take disease and illness. Built into the notion of terminal illness is the idea that the sickness borne by a human body will ultimately bring about that body’s death. That body already speaks of its death. Death is making itself felt in advance.

And so, death is more than a biological event. Even living things can bear the marks of death.

This is no novel claim. The creation account recorded in the Bible says that in the beginning, there was good. But an intruder appears. In the wake of humanity’s choice to go its own way rather than the way of its Maker, death arrives on the scene. And death is an imposter—not simply a physiological fact at the end of the road, but a destructive and alien presence in God’s good world.

Understood in this way, death is not something that God intends humans simply submit to. Death is something to protest. This is why Kim Leadbeater’s comment gets at something important: this kind of death should be protested. The marks of death should not be accommodated, because they do not belong to the goodness of what God has made.

At the heart of the Christian faith is God’s own ultimate protest against the force of death. Christians celebrate that God himself came in the man Jesus to “destroy death.” This is plainly more than biological. Jesus came to free humanity from the entirety of death’s grip. Hence why, when Jesus speaks of “eternal life” he means more than endless biological existence. He means liberation from all the havoc that death brings to bear within God’s world. To the Christian imagination, the power of death must be protested because God protested it first.

The question is how to protest death. Within the framework of the bill, shortening death or terminal illness is identical with ending life. This is the only form protesting death can take.

But the Christian faith makes a far more radical claim: God alone overcame death by dying. This is the point: Jesus was the one—the only one—who emerged resurrected victor in the contest with the power of death. In seeing his death and resurrection, an unshakeable hope emerges. Death is not the victor. And this hope stands above our present experience of death—in whatever form—and, at the same time, calls us to join the protest.

Ethicist Stanley Hauerwas once wrote: “it seems odd that in the name of eliminating suffering, we eliminate the sufferer.” I have deliberately avoided discussing suffering, not least because it would take me too far afield. Yet Hauerwas has put his finger on what I’m getting at. Protesting death—in the big sense—belongs to the Christian faith. Protesting suffering and pain, economic and racial injustice, fractured relationships and broken societies, are all part of this protest. But can eliminating those who live within the shadow of death be part of this protest? I think not. The Christian faith believes there is only one who can overcome death in this way, and that is God himself—who has already done it.