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

Comment

Culture

Politics

3 December 2024

5 min read

The assisted dying debate revealed the real role of Parliament

MPs from areas where people are vulnerable and at risk were more sensitive to the dangers.

M. Ciftci

Mehmet Ciftci has a PhD in political theology from the University of Oxford. His research focuses on bioethics, faith and politics.

An MP stands and speaks in a parliamentary debate.

MP Diane Abbott speaks in the debate.

Parliament TV.

What would be the effect of allowing assisted suicide for those ‘people who lack agency, the people who know what it is to be excluded from power and to have decisions made for them’, asked Danny Kruger MP, as he wrapped up his speech? ‘What are the safeguards for them? Let me tell the House: we are the safeguard—this place; this Parliament; you and me. We are the people who protect the most vulnerable in society from harm, yet we stand on the brink of abandoning that role.’

His words capture an important aspect of Friday’s debate: what is the point of Parliament? Do MPs meet to turn public opinion polls into policies? If the majority are in favour of something, do MPs have nothing left to do but to follow the public and sort out the fine details? We might instinctively say ‘Yes!’ It seems right and democratic to treat those whom we elect as people we select and send to do our bidding. And the polls do seem to show the majority of people supporting assisted suicide, at least in principle – although there are good reasons to be sceptical about those figures and about the conclusions drawn from them.

But there are numerous times when the majority are known to be in favour of something but politicians refuse to endorse it. Polls repeatedly show that a majority are in favour of reintroducing the death penalty. Why might it be right for MPs sometimes to ignore what the purported majority thinks and to use their own judgement?

Because Parliament is not just a debating chamber.

An older way of referring to it was to call it the ‘High Court of Parliament’ because ‘parliament, classically, was where individuals could seek the redress of grievances through their representatives,’ as law lecturer Dr Robert Craig writes. It performed its function admirably in response to the Horizon scandal: a legitimate grievance was brought to its attention, and it responded to redress the wrongs done to the sub-postmasters by passing a law to ‘overturn a series of judgments that could only have been obtained, and were only obtained, by a toxic, captured and wilfully blind corporate culture’.

Friday’s debate featured many MPs who understood what they were there to do. They acknowledged the ‘terrible plight of the people who are begging us for this new law’ as Danny Kruger said. But they also spoke up for those who were in danger of being harmed and wronged by the bill: the disabled and the dying, and all the vulnerable who were not there to speak on their own behalf.

Many echoed the concerns expressed by Diane Abbott about coercion: ‘Robust safeguards for the sick and dying are vital to protect them from predatory relatives, to protect them from the state and, above all, to protect them from themselves. There will be those who say to themselves that they do not want to be a burden. … Others will worry about assets they had hoped to leave for their grandchildren being eroded by the cost of care. There will even be a handful who will think they should not be taking up a hospital bed.’ And evidence of coercion is hard to find and trace: ‘Coercion in the family context can be about not what you say but what you do not say—the long, meaningful pause.’

An analysis shared on X by law lecturer Philip Murray found an association between the level of deprivation in a constituency and how likely a Labour MP was to vote against the bill. He also shared figures showing that 2/3 of MPs from ethnic minorities voted against it. In other words, MPs from areas where people are vulnerable and at risk were more sensitive to the dangers of helping people to kill themselves.

The second reading of the bill on Friday was a crucial moment for them to decide whether the bill would fix an injustice or whether it would itself cause harm.

But it seems that many MPs did not appreciate what the debate was about or what they had gathered to do. Layla Moran MP said: ‘The media are asking all of us, “Are you for or against the Bill?”, but I urge hon. Members to think about the question differently. The question I will be answering today is, “Do I want to keep talking about the issues in the Bill?”’ But James Cleverly MP intervened: “she is misrepresenting what we are doing at this point. We are speaking about the specifics of this Bill: this is not a general debate or a theoretical discussion, but about the specifics of the Bill.” He was right to be impatient. Unlike the Oxford Union, the vote has consequences. Parliamentarians are not there merely to debate. As the term ‘High Court of Parliament’ suggests, when MPs (either on their own initiative or as a government) propose bills, what they are often doing is conveying a plea to redress some grievance, and their debates are to decide whether to respond by making laws to grant justice to the wronged.

The second reading of the bill on Friday was a crucial moment for them to decide whether the bill would fix an injustice or whether it would itself cause harm, because the scrutiny that the bill will undergo in the following stages is not likely to be as rigorous as with government bills. As a Private Member’s Bill, the assisted dying proposal is free to be scrutinised by a committee selected by the MP who has proposed the bill, i.e. Kim Leadbeater. When the bill reaches the stage for a final vote in the Commons at the third reading, no further amendments can be made and the time for debate is likely to be short.

It is rare but bills are sometimes defeated at the third reading. With eighteen abstentions on Friday and at least thirty-six MPs claiming they might change their minds later, there is still hope.

Each sitting of the Commons begins every day with a prayer by the Speaker’s Chaplain, who prays that MPs ‘may they never lead the nation wrongly through love of power, desire to please, or unworthy ideals but laying aside all private interests and prejudices, keep in mind their responsibility to seek to improve the condition of all mankind.’

We can only hope and pray that at their next opportunity, MP will consider this bill in light of their responsibilities as the country’s High Court, charged with protecting the most vulnerable in society from harm.