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

Death & life

9 November 2023

4 min read

The cold truth of Canadian lives not worth living

Canada’s implementation of medical assistance shows that a society considers some lives not worth living.

M. Ciftci

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

A IV drip bag hangs from a medical stand.

Marcelo Leal on Unsplash.

Alan Nichols’ application for euthanasia mentions only one health condition as the reason for his request: hearing loss. “Alan was basically put to death,” according to his brother. He was hospitalized after being found dehydrated and malnourished in his house. He asked his brother to “bust him out” of the hospital as soon as possible. A month after being admitting, he was euthanized through MAID (medical assistance in dying), despite the desperate objections of his family and his primary health practitioner. They were informed of the procedure over the phone only four days before it took place. They have since reported Alan’s case to the police; they argue he was not in a fit state of mind to understand the procedure or make decisions for himself. He had no life-threatening conditions. He was vulnerable.

Canada’s relaxed laws around MAID came to international attention when CTV News reported that a fifty-one-year-old woman chose MAID after failing for two years to find housing that would allow her to manage her multiple chemical sensitivities. Despite the best efforts of friends and even her doctors to get her suitable housing in Toronto, letters left behind documented her desperate yet fruitless search for help. She begged officials at all layers of government to help find an apartment free from the chemicals and cigarette and marijuana smoke that worsened her symptoms. “The government sees me as expendable trash, a complainer, useless and a pain in the a**,” she said in a video days before her death.

These are only some of the terrible stories that have been reported after Canada became the first Commonwealth country to legalise assisted suicide and euthanasia. Advocates of MAID will point to how comfortable Canadians are with it. As a recent poll revealed, MAID is supported by 73 per cent of Canadians, with 27 per cent supporting MAID even if the only affliction is poverty, 28 per cent for homelessness, and 20 per cent for any reason whatsoever. Those numbers may shift as disability activists and medical professionals continue to raise the alarm over the consequences of growing numbers choosing MAID, from 2,838 deaths in 2017 to 10,064 in 2021.

MAID was introduced in 2016... Only those suffering from incurable diseases whose death was “reasonably foreseeable” were eligible, initially.

There are two reasons why the Canadian example teaches us to remain firmly opposed to the legalisation of assisted suicide and euthanasia in the UK.

The first is that the slippery slope in this case is real. Campaigners for Dignity in Dying claim they want only the legalisation of assisted suicide, not of euthanasia. The latter involves a doctor directly administering lethal drugs, without requiring the patient’s participation. (MAID permits both, although euthanasia is the method used in 99 per cent of cases.) They argue there is no evidence that legalising assisted suicide in the UK would lead to a loosening of laws over time. But this is contradicted by the timeline of events in Canada.

MAID was introduced in 2016 following the Supreme Court of Canada’s ruling in 2015 that the criminalisation of assisted suicide violated the Canadian Charter of Rights and Freedoms. Only those suffering from incurable diseases whose death was “reasonably foreseeable” were eligible, initially. But the MAID evangelists did not wait long before complaining that this was too restrictive. The courts obliged, and in 2019 the court of Quebec found the “reasonably foreseeable” condition to contravene the Charter. In 2021 the laws were changed to allow MAID for those whose natural death was not foreseeable, but who have a condition considered intolerable by the applicant. Those suffering only from mental illnesses will be eligible for MAID in March 2024.

The slope becomes more slippery still: the government is considering further expansion to allow “mature minors”, vaguely defined as children mature enough to make their own treatment decisions, to ask to be killed, even against a parent’s wishes.

A society that kills those who ask to be killed has already made a choice to consider some lives not worth living,

The second lesson is about what kind of society we want to be. For a doctor to present the option of being killed, which Canadian doctors are now obliged to do whenever “medically relevant”, even if the patient does not bring it up first, does not expand patients’ freedom. It is rather an invitation to despair. This is frequently forgotten when some think that denying patients the choice to seek death is “imposing Christian values” as one cleric of the Anglican Church of Canada said. Roman Catholics, Evangelical Christians, and others have opposed MAID because a society that kills those who ask to be killed has already made a choice to consider some lives not worth living, and to invite those already made vulnerable by their pain and distress to see themselves as a burden to others. Not to mention the perverse incentives created to reduce medical and palliative care.

We can and should support those who are frail and in need of care at the end of their lives to die with dignity, without hastening their deaths, without deeming their lives no longer worth living. Dame Cicely Saunders and other pioneers of the hospice movement have shown us what an alternative to assisted suicide and euthanasia would look like. Hospices put into practice the parable of the Good Samaritan, who responded with pity to the man beaten by robbers, bandaging his wounds and giving him a place to rest and receive care. Jesus tells the parable to show what it means to be a good neighbour to someone and how to react with compassion to suffering. What would have been the message of the parable if the Samaritan had instead reacted to the sight of the suffering man by reaching for his dagger?