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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Change

Character

14 June 2024

7 min read

What’s the point of purpose?

We need a wider understanding of our purpose – grand or small.

Emerson Csorba

Emerson writes on geopolitics. He is also a business executive and holds a doctorate in theology.

A white arrow on tarmac points towards a setting sun and people walking by a silhouetted lamp post.

Chris Loh on Unsplash.

In his 2009 book Start With Why, the leadership speaker and consultant Simon Sinek encourages leaders and businesses to think about their purpose. He encourages them to answer the question ‘Why?’ before moving to ‘How?’ Sinek’s book is part of an industry, with no shortage of self-help books, executive coaches and university programmes assisting individuals in finding purpose. Surely Sinek is right that a sense of mission (the ‘Why?’) needs to come before the development of a strategy (the ‘How?’ as well as ‘Who?’ ‘What?’ ‘When?’ and ‘Where?’). Yet working out our purpose is not easy. It takes time, effort, listening and crucially, an open mind.

In a ‘purpose economy’ (to use the term coined by writer Aaron Hurst), we risk arriving at fast, superficial, or inflated purposes disconnected from the unique vocations to which we are actually called. Several years ago, I undertook a project, of which elements were shared in the Harvard Business Review. One interviewee stated ‘We are a generation that is ruthlessly comparing ourselves with those around us and our role models at the same time. And if we are not doing something exceptional or don’t feel important and fulfilled for what we are doing, we have a hard time.’ In an age dominated by social media and its emphasis on presentation of superficial images inviting us to compare ourselves with others, these are words worth dwelling on.

This reflection struck me at the time, implying that many people believe that their purposes must be significant. Without grand purposes, we tend to struggle. That interviewee was right. Many of us value purposes involving high levels of excellence if not notoriety, whether pursuing elected political office, climbing the ranks in prestigious industries such as finance or consulting, or entering professions that are well-known and whose value can be readily explained to others (such as medicine, law or accounting).

The problem with an idea of purpose focused on excellence is that only some people will be seen to have worthy purposes. The consequence is more ‘ruthless comparison, in which we all look over our shoulders to what our peers are doing, wondering whether their respective purposes measure up or not. Of course, this issue could be dismissed as little more than a case of early-career angst, in which ambitious self-starters seek to outdo their peers in climbing the career ladder, but I doubt this is a good explanation.

Her calling is not as impressive in the world as the more publicly recognised calling of a profession, but surely the calling is of equal value.

After all, modern workplaces are full of people, across all generations, searching for purpose. More generally, rapid industrial transition over recent decades – whether the loss of the shipbuilding or coal mines (not to mention important parts of the steel industry in recent months) in the UK, or the recent loss of manufacturing jobs in the United States – and waves of technological change leave countless thousands of people feeling lost at sea. A sense of aimlessness is amplified when personal dignity is connected to work rooted in local communities. When this industrial work vanishes seemingly overnight amid shifts in government policy and technological change.

These examples suggest the need for a wider understanding of purpose, which makes room for many kinds of excellence, whether grand or small. Consider the example of a single mother. In comparison to the high-flying politician, business executive or university administrator, her purpose is anonymous. A paid job in the workplace is unlikely to be the source of the single mum’s purpose. Rather, the raising of a family is almost certainly the driving purpose in her life, a purpose which is nevertheless no less significant than those occupying more esteemed, high-status roles.

In the eyes of God, the single parent is called to the vocation of parent (I don’t think there is a difference here between a vocation or purpose), possibly through an unexpected event such as a divorce or passing of a spouse. Her calling is not as impressive in the world as the more publicly recognised calling of a profession, but surely the calling is of equal value. Indeed, from a Christian perspective, the lone parent fulfills a vital role of service in raising children who can help to approximate the Kingdom of God on Earth. Martin Luther pointed it out well: every person has a divine calling providing them with purpose, whether they are aware of this or not.

The idea is that a sense of what we are becoming matters more than the circumstances we find ourselves in.

How then can we define our purpose when elements of culture, technology and other forces tempt us to identify clear purposes as rapidly as possible? To start, it helps to resist the urge to form large and lengthy purposes. Our purposes are often revealed gradually. Even the most profound events altering the landscape of a person’s life must be digested slowly. Tom Wright, in his biography of Saint Paul, writes that after Paul’s encounter with Jesus while on the Road to Damascus, he returned to Tarsus for ten years to meditate on what he had learned. In all likelihood, Paul spent this time working as a tentmaker, working within a ‘small, cramped workshop,’ in which ‘he prayed, he studied, and he figured out all sorts of things.’

It is only ‘by the end of the Tarsus decade [that] Saul had worked out in considerable detail what it meant that the One God had revealed himself in and as the crucified and risen Jesus.’ Paul’s purpose was formed over many years, ‘hammering away’ at what he learned on the Road to Damascus. Had Paul wanted to make sense of his encounter with Jesus in a single go, then his purpose would surely have been truncated, thereby limiting the fulfilment of his unique calling that transformed the world we live in today.

Our circumstances may also limit the scope of our purposes. Our family, geography, gender, and socioeconomic situation all shape the people we become – at least in the short-term. The philosopher Robert Adams writes in Finite and Infinite Goods that ‘One’s actual circumstances condition and in various ways influence and limit one’s vocation. The vocation, however, is not the circumstances, but what one is called to do in them.’

The idea is that a sense of what we are becoming matters more than the circumstances we find ourselves in. The question of who we wish to become is a crucial one, involving personal vision, and Adams sees this question as outweighing extensive consideration given to existing circumstances. Another idea of vocation, proposed by the theologian Oliver O’Donovan, is more gradual. He says that we come to be a certain person over time, without too much planning. Our purposes develop one day at a time. Specific events give us chances to put our purposes into action, but we do not know when these events will occur.

With this approach, clear purposes are formed over time through constant practice, rather than revealed at the outset of an activity.

How then can we find our purposes when they are often ambiguous, intertwined with our personal circumstances, and without too much recourse to self-help books, life coaches or university programmes recommending quick answers?

Our purposes need to be worked out through consistent, small-scale practice of the things we enjoy. For some, this is the playing of a musical instrument, for instance the piano or guitar, two hours per day. For others, this is the constant practice of a given sport in the early hours of the morning. And for others, this is working away on a tricky mathematical problem that simply grips them.

With this approach, clear purposes are formed over time through constant practice, rather than revealed at the outset of an activity. It is then unexpected events – as Harold MacMillan said ‘Events, dear boy, events’ – which shape us. These events may change us, setting us in entirely new directions much like Paul’s encounter on the Damascus Road, or the lone parent following a divorce or death of a spouse. But it is not only the events that create purpose. The seeds of purpose are planted well ahead of time, through practice in relation to the things that bring us joy.

Our purposes, then, should be less a cause of anxiety requiring self-help industries – needing to figure everything out at once – than a reason for play, practice, and prayer, listening to the still small voice – perhaps the voice of God, gently leading us to a settled sense of purpose. This allows purposes we never imagined to reveal themselves to us over time, sometimes merging with – and sometimes out of – our circumstances and personal attributes that are more easily visible.

Rather than search for fast answers to our purposes, we can take comfort knowing that we do not need to do all the work ourselves. We may begin to work out our purpose through action, but trust that our purposes will come to fruition when the time is right.