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

Belief

Care

Creed

4 December 2024

4 min read

Understand what we thirst for

Whether for water or meaning, it’s a primal force.

Helen Cowan

Helen is a registered nurse and freelance writer, writing for audiences ranging from the general public to practitioners and scientists.

A child wearing a wool hat holds a glass and drink water from it.

Johnny McClung on Unsplash

Quenching thirst is a global problem. It can also be profoundly personal, impaired by illness. For nurses, it can be ethically and emotionally difficult, when treating dying patients. But is there ultimate relief?

Thirst is the subjective sensation of a desire to drink something that cannot be ignored. The world is thirsty; globally, 703 million people lack access to clean water. That’s 1 in 10 people on the planet.

Thirst is a life-saving warning system that tells your body to seek satisfaction through swallowing fluid. It works in partnership with other body processes - such as changes in blood pressure, heart rate and kidney function - to restore fluid, and salt, levels back to where they belong. Failure of any part of this beautifully balanced system leads to dehydration (or water intoxication), and perhaps to seizures, swelling of the brain, kidney failure, shock, coma and even death.

Sometimes it’s difficult to quench thirst, because of problems with supply. According to the World Health Organization, at least 1.7 billion people used a drinking water source contaminated with faeces in 2022. Sometimes in war, water is weaponised, with systematic destruction of water sources and pipes. Water laced with rat fur, arsenic and copper has meanwhile been reported in prisons across the USA.

At other times, there may be “water everywhere, but not a drop to drink” because of individual problems with swallowing. As a nurse, some of my most heartbreaking moments have been when I have been unable to fulfil a need as basic as a patient’s thirst; when even thickened fluids have led to intense coughing and distress, and a realisation that I can only moisten mouths and give so-called “taste for pleasure”: very small amounts of a favourite liquid or taste using a soft toothbrush, or a circular brush gently sweeping around the mouth and lips to release some of the liquid - even, and especially, at the end of life when the patient is unconscious.

Difficulties in drinking are common in dementia when fluid can seem foreign and swallowing a surprise to the system. It’s thought that over 50 per cent of people in care homes have an impaired ability to eat or drink safely; 30 to 60 per cent of people who have had a stroke and 50 per cent of those living with Parkinson’s may struggle to swallow.

Other conditions that may affect swallowing include multiple sclerosis, cerebral palsy, and head and neck cancers. Diabetes is characterised by a raging thirst owing to problems with insulin (diabetes mellitus) or an imbalance in antidiuretic hormone levels (diabetes insipidus). In intensive care, patients are predisposed to thirst through mechanical ventilation, receiving nothing by mouth, and as a side effect of some medications. But thirst is a “neglected area” in healthcare, writes palliative care researcher Dr Maria Friedrichsen.

“Knowledge of thirst and thirst relief are not expressed, seldom discussed, there are no policy documents nor is thirst documented in the patient’s record. There is a need for nurses to take the lead in changing nursing practice regarding thirst.”

Is there another thirst that is also being missed in nursing, and in life in general – a spiritual thirst, beyond the physical desire to drink? In his book, Living in Wonder, writer Rod Dreher argues that humans are made to be spiritual, and that a critical sixth sense has been lost in a “society so hooked on science and reason”. We humans crave love in our deepest selves; we have an insatiable thirst for everything which lies within – and beyond – ourselves. Auschwitz survivor Viktor Frankl, who was later appointed professor of psychiatry at the University of Vienna, became convinced that human beings have a basic “will for meaning.” “The striving to find a meaning in one’s life,” he wrote, “is the primary motivational force in man.”

In the harsh sun of a Middle East day, an ancient story of a man and a woman encountering each other at a water well illustrates this dual thirst for water and meaning. The man, Jesus, thankful for a drink of water given to him at the well by an outcast Samaritan woman, said that “Everyone who drinks this water will be thirsty again, but whoever drinks the water I give them will never thirst. Indeed, the water I give them will become in them a spring of water welling up to eternal life.” In that midday sun, such imagery made a powerful statement.

Being mindful of spiritual thirst when drinking water is something also captured in a Ghanaian proverb and pictured perfectly in the many birds that drink by gravity, so tipping their heads back when they swallow.

“Even the chicken, when it drinks,

Lifts its head to heaven to thank God for the water”.

Unsatisfied thirst is part of the human condition, we long for something more; it’s living proof of our immortality, says French poet Charles Baudelaire. Despite his Olympic success, athlete Adam Peaty said that society didn’t have the answers he was seeking, and that a gold medal was the coldest thing to wear. He “discovered something that was missing” when attending church for the first time, and now has a cross with the words “Into the Light” tattooed across his abdomen, symbolizing his spiritual awakening. We are more than mechanical machines with physical needs. We are rather gardens to tend in a dry and thirsty land, with souls in need of intensive care.