Article
Ageing
Care
Change
Death & life
6 min read

A Tolkien poem helps a nurse understand the ravages of dementia

'Not all who wander are lost.'

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. 

Article
Change
Freedom of Belief
Middle East
7 min read

Letter from Amman: discovering resilience around the dinner table

Dining in a different culture lets Belle TIndall contemplate struggle and belonging across the heartlands of the Middle East.

Belle is the staff writer at Seen & Unseen and co-host of its Re-enchanting podcast.

a Lebanese meal of many dishes displayed on a table.

Did you know that a traditional Lebanese meal is usually served in four or five courses?  

First comes the vegetarian feast; a smoky eggplant dip, a mountain of pita, grape leaves that are rolled around vegetables, rice and nuts, bowls of pickled turnips and ribboned cucumber.  

Then a hint of meat is introduced; chicken wings and slow-cooked liver, beef meatballs unfused with onion and parsley and smothered in breadcrumbs, all served alongside more dips, more vegetables and more pita.  

The third time the servers come around, you are presented with the climax of the meal - a plate of painstakingly cooked lamb and chicken skewers. Only once that has been enjoyed can you expect desert before a final course of fresh mint tea and little almondy-flavoured treats.  

Each time the servers re-appear, you find yourself convinced that there cannot be enough room on the table to accommodate yet another round of plates. And each time you realise that you were wrong. Lebanese cuisine, similar to many other Middle Eastern cuisines in this respect, is designed to be enjoyed slowly, continually, and communally.  

I did not know this.  

When I found myself at a Lebanese restaurant in their neighbouring country of Jordan (affectionately referred to as ‘the oasis of the Middle East’ throughout the evening), I naturally loaded up my plate on the first round, wondering why everyone around me was being so overly polite with their miniature portions. That was, of course, my mistake. By the third (and arguably best) course, I was defeated. My far savvier dining companions that evening were Christians leaders from across Jordan, the Middle East, and beyond. Among those present were Anglican bishops and archbishops, those whose provinces spanned countries and even continents. Leaders from the Oriental Orthodox family – representing Coptic Orthodox, Syriac, Indian, Greek and Armenian. There were Maronite leaders from Lebanon, Lutheran leaders from Jordan, and Anglican leaders from Israel to name but a few. And then there was me. I am twenty-seven years or so into this Christian life of mine, and as well as being exposed to six or seven different expressions of ‘church’ in my lifetime, I also read a lot. So, I had kidded myself into thinking that I understood the immense diversity encapsulated in the term ‘Christianity’. It turns out that I was wrong, again (are you beginning to sense the theme of my trip?).  

If there is such a thing as sacred geography, I think I may have experienced it that afternoon.  I was able to soak in the past, and it was glorious. Almost as glorious as the glimpse of the present that I was granted that evening. 

Utterly honoured to be at that table in Jordan’s capital city of Amman, I was exposed to more diversity in that one meal than I had experienced in my entire life. I am truly not exaggerating when I say that there wasn’t a single minute spent at that restaurant where I wasn’t soaking up something entirely new; whether that be a story, a statistic, a taste or a custom. There were seemingly endless details to learn about differing expressions of a faith that I knew so well, lived out in contexts that I knew not at all. The whole experience was a sledgehammer to any notions, consciously denied yet subconsciously held, that Christianity had come to set up its largest camp in Europe.  

On the contrary; we are, at present, but a quarter of the story.  

Furthermore, the Middle East, in many respects, is the birthplace of Christianity. These countries are the ‘biblical heartlands’, as Rupert Shortt puts it. The Christian presence there dates back to the lifetime of Jesus Christ himself, who travelled and taught throughout the then Roman-occupied lands. As a Biblical studies scholar, one of my favourite oddities of Christianity is that it is, to a degree, situated. There’s human context involved; tangible, immersible, learnable context. The death and resurrection of the Son of God happened in human history. Of course, Christianity simultaneously bursts the banks of such contexts; in a far truer way it is unplaceable and certainly uncontainable, transcending time, space and matter. It resides beyond all that we can measure. God is, after all, over all things, through all things, and in all things (to borrow a phrase from Paul… who wrote this in a particular letter, to a church rooted in the particular city of Ephesus, during the particular timeframe of 60-62 AD. So you see my point…).  

But still, the context is there: the depth of history, the breadth of legacy. As Augustine once said of the Church: it is on a pilgrimage through time. And I would suggest that nowhere is such a pilgrimage more obvious than the ‘biblical heartlands’ of the Middle East. Indeed, one of the variables that fed into me being embarrassingly eager at the dinner table that evening was the appetite that had been worked up that day. An appetite caused by venturing into the Jordanian wilderness, walking along the Jordan River, journeying up Mt. Nebo, looking out over the landscape that one can find detailed in the pages of the Bible.  

‘Not a bad place to have a cup of tea, aye?’, remarked the Archbishop of Dublin (who knows these regions well), as we sat next in the grounds of a Franciscan Monastery on the top of Mt. Nebo, looking out over the Dead Sea and all that surrounds it.  

If there is such a thing as sacred geography, I think I may have experienced it that afternoon.  I was able to soak in the past, and it was glorious. Almost as glorious as the glimpse of the present that I was granted that evening.  

I began to ponder at length what faith looks like when it is laced with defiance. By the third course I was beginning to appreciate (albeit in an incredibly limited sense) what hope feels like when it must be stubborn to survive. 

Over a long and shared meal, the kind that makes getting to know the stranger opposite you quite inevitable, I was able to hear about what it’s like to be a Christian in the Middle East in the here and now. The hospitality extended to me at the table included me being so generously provided with stories of what it can be like to be a Christian in their contexts.  

Of course, many stories shared throughout my time in Jordan were pertaining to the on-going Israel-Palestine conflict. I was able to speak with a Greek Orthodox Bishop about the Greek Orthodox church, filled to bursting with refugees, which was struck and destroyed in a Gaza City blast. I was able to hear about the Anglican-run Cancer Treatment Centre of the al-Ahli Arab Hospital, which was hit and damaged in a similar way.  

I learnt about the Christian communities who are readying themselves to respond to the needs and trauma of those who may, eventually, be able to seek refuge in their countries. I heard compassion flow from people whose eyes hadn’t for one moment turned away from the on-going plight of the Palestinian, nor the Israeli, people.   

I also realised that evening, just how much there is much to be learnt about the faith that one has taken for granted, from those for whom the very same faith is a source of discrimination, even danger. The pressure that 360 million Christians across the world are living under is referred to by Rupert Shortt as ‘christianophobia’ and profoundly coined a ‘360-degree threat’ by Janine Di Giovanni.  

I heard how it feels to receive word that members of your community have been executed for their Christian faith; how such news incites instant fear and unimaginable grief. I spoke to one man who plans to leave the country he’s currently residing in as soon as a certain political leader is no longer present, because according to him, this sympathetic leader’s presence is the only reason his Christian faith has been tolerated thus far.  

And very quickly, I realised that I was no longer learning about these Christian leaders and the communities they represent, I was learning from them. I began to ponder at length what faith looks like when it is laced with defiance. By the third course I was beginning to appreciate (albeit in an incredibly limited sense) what hope feels like when it must be stubborn to survive. I glimpsed first-hand the difference that resilience can make to one’s compassion. Like I say, I was intending to learn about these communities, but I found myself learning from them.  

Sitting at a table in a country that I had never been to before, with a group of people who were all strangers to me before this trip, trying to wrap my head around contexts that I have no experience of, the words of the afore-mentioned Janine Di Giovanni sprang to mind,  

‘It (Christianity) combines ritual, which soothes in anxious times, with a vast sense of belonging to something much larger and greater than yourself.’ 

How, in that situation, where I had utterly misunderstood the meal-time etiquette, could it be that I felt a sense of belonging? On one level, it could very well have an awful lot to do with how naturally hospitality seems to come to people in Jordan, and it appears, the Middle East in general. But, I would suggest that it is something else too; something larger, something greater, something unseen.  

Perhaps Christian community, in accordance with the Son of God upon which it is built, is both completely situated in one’s individual time and place, and simultaneously utterly un-containable.