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Ageing
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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. 

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Care
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Education
Hospitality
3 min read

University turmoil makes the case for chaplains

Creating space, offering time, across cultures.
A cup of coffee is offered across a table to a hand that is hesitant.
Priscilla Du Preez 🇨🇦 on Unsplash.

As the university sector convulses, what’s the point of their chaplains? 

The university chaplains fulfil a role which calls for a unique set of skills, including pastoral imagination, flexibility, and creativity as they respond to various, often unpredicted, challenges. Chaplains occupy a place between highly professional Students Services colleagues at the university - think counsellors, experts on emigration and finances, and local parishes representing diverse theological viewpoints.  

Every year, while meeting and greeting international students, one of the earliest tasks for the chaplains is to explain their role, as in non-European languages and cultures there is no equivalent of a “chaplain”. Are the chaplains sort of “spiritual gurus”, “life coaches”, “champions of wellbeing”? What is the real difference for the students and the staff in a secular academic institution, between approaching a chaplain and a professional counsellor?   

In addition to all these initial questions that a student might ask, other observers question the role of chaplains in a secular academic institution, for being counterproductive. Why provide and finance a chaplain without any measurable outcomes of his or her work? Whether it is counting confirmations, ensuring Christian faith and values as clearly pronounced, or/and conducting regular acts of worship for the students and staff? 

Looking at my daily engagement with the international, diverse community of the students and the staff, there are at least three areas of presence (rather being than doing, adapting famous Gabriel Marcel’s distinction), which illuminate this unique type of vocation.  

First, currently British universities are going through a very painful, dramatic time of saving money and redundancies. Chaplaincy is becoming a visible space for emotional support to those who are worried about their immediate future. Students and staff are going through a period of uncertainly, if not confusion, so chaplaincy holds the unique space on the campus to show empathy to those who cry, and to offer time for those who need to speak about their pain.  

Secondly, chaplaincy has the privilege of being very creative in the ways of engaging with the local academic community. The memorial services for the students and the staff who died recently are not the formal funerals: yet they allow the participants to speak, play the music, show videos about the departed.  There is a real celebration of life, brings consolation to academic colleagues, families and relatives.  

Thirdly, unlike other professional services, only chaplaincy is able to show the generosity of time to anyone who comes through the door. That’s because those  individuals are welcome as the ‘image’ of God. The rest about that individual is accidental, he or she finds ‘home away of home’ in the space of chaplaincy, because through the eyes of Christian faith: he or she is precious and unique. 

What about proclaiming the message about Jesus Christ? There is a story about St Francis of Assis who said to his brothers, while approaching an Italian city: “now we will proclaim the Gospel to all who live in this city”. After that he and his companion marched through the streets in silence. When they left the city, one of his brothers, rather surprised by lack of preaching, asked: “Francis, when did we proclaim the Good News?”. “Our way of walking was the proclamation of our faith”. The way how we greet, spend time with students, talk, joke and pray – reflects that proclamation.     

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