Article

Ageing

Care

Change

Death & life

20 September 2024

6 min read

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

Explainer

Care

Creed

30 June 2023

6 min read

Bed rotting and an old art of rest

In a culture where “exhaustion is seen as a status symbol,” bed-rotting is an emerging trend. Lianne Howard-Dace reflects on self-care and how to rest and refresh.

Lianne Howard-Dace

Lianne Howard-Dace is a writer and trainer, with a background in church and community fundraising.

a sleeper pulls a blanket up over their head.

There’s a trend doing the rounds on TikTok which is attracting a fair amount of comment; the practice of taking (at least) a day in bed to recuperate when you’re running low on energy. Gen Z are - with characteristic directness - calling it ‘bed rotting’.

At first, this sounds like nothing new. People have been taking to their bed for centuries. Gen X might’ve called it vegging out, millennials would call it a duvet day.

From the discourse that’s sprung up about bed rotting though, it seems like some bigger questions are being explored around this trend. Firstly, Gen Z are reclaiming the need to stay in bed by branding it as a form of self-care. This picks up on some broader wellbeing trends online, where people are trying to decouple their sense of worth from their productivity. This train of thought picked up steam during the Covid-19 pandemic, and seems to continue to be something people are wrestling with.

As others are pointing out... is getting to the point of needing a day to rot in bed is really a good approach to self-care?

I rather like the visceral nature of the phrase ‘bed rotting’ and I’m sure that, whichever generational cohort we fall into, we can all relate to the occasional need to totally switch off to refresh and recalibrate. However, as others are pointing out, a second consideration is whether getting to the point of needing a day, to rot in bed, is really a good approach to self-care. Or would more preventative measures be the better way to care for yourself? Some commentators on TikTok have suggested that a combination of other gentle activities would actually be better at delivering the desired results than lounging in bed alone.

Dr Saundra Dalton Smith suggests in her book Sacred Rest that there are seven types of rest: physical, mental, spiritual, emotional, sensory, social and creative. Whilst bed rotting provides perhaps three or four of these types of rest, it may not provide the long-term refreshment sought if it doesn’t nurture the other parts of us as well.

Should we all just be expected to mindfulness our way out of a mental health crisis or yoga our way out of chronic pain?

While framing this extreme need for rest as self-care may give people permission to stop and reduce the stigma of doing nothing, it also puts the onus on the individual. I think the risk of self-care narratives in general is precisely in the focus they put on the self. While it can be healthy and empowering to take action to improve your wellbeing, it also draws attention away from the societal systems and structures that are contributing to everyone feeling so exhausted all the time. Should we all just be expected to mindfulness our way out of a mental health crisis or yoga our way out of chronic pain? Or should we be looking more widely at what is going on in the world?

This tension between taking responsibility for my own wellbeing but also reflecting on how I relate to the wider concepts of work, productivity and success is a very live, everyday issue for me. I have fibromyalgia, a chronic health condition characterised by fatigue and widespread muscular pain. Whilst conventional medicine gives some relief, I have to manage my energy levels very closely and intentionally pace myself to avoid my symptoms flaring up, though sometimes it is out of my control.

Unfortunately, if I were to let myself get to the point of desperately needing to bed rot it might take me a week or two to fully recover. I have to resist the urge to say yes to every invite and make sure I have a balance of work, rest and play in each week. This is helped by the privilege of being able to schedule my work around my own needs, it would certainly be much harder if I was tied to a very strict working pattern. In a way, it's like I have an early warning system for burnout, and I’ve become very attuned to fluctuations in my mood, energy or pain levels that might indicate the equilibrium is off.

As part of my energy management strategies, I have also found that the ancient practice of sabbath from the Judeo-Christian tradition has helped me to both take regular time to rest and to remind myself that I am a human being, not a human doing.

In Genesis, the opening poem of the Hebrew scriptures, we hear that after six days of hard work creating the universe, God rested on the seventh day. For thousands of years, Jews and Christians have attempted to learn from this and incorporate a day of rest into each week. The practice also exists in Islam.

Each Sunday I try to do as little as possible and particularly to disconnect from digital channels, because I know they often take more energy than they give me.

The way that this plays out in people’s lives ranges from very strict observance to more loosely held rules and rituals. However, you approach it, there is much to be learned from this ageless wisdom. I initially began practicing sabbath myself when I went freelance and realised how easily I could end up working seven days a week if I didn’t pay attention. This was six months or so before the first Covid-19 lockdown in the UK and I was extremely grateful to have established this habit in my life when that occurred.

For me, sabbath isn’t just ensuring I’m squeezing rest into each week but also creating rhythm. It punctuates my week and gives everything else breathing space. Each Sunday I try to do as little as possible and particularly to disconnect from digital channels, because I know they often take more energy than they give me.

In The Ruthless Elimination of Hurry, John Mark Comer helpfully suggests two simple criteria to decide whether something is permissible on the sabbath. Is it rest or worship? If it’s not one of those two things then it can wait. For me, worship usually means going to church, but for you that could be something else that helps you connect to something bigger than yourself and experience a sense of wonder. Perhaps immersing yourself in nature, or engaging with an awe-inspiring work of art.

Another helpful piece of advice about sabbath I heard from Annie F. Downs on Instagram:

“If you work with your hands, sabbath with your mind. If you work with your mind, sabbath with your hands.”

As someone who spends most of my working week creating content on a computer, this is a useful reminder not just to read and journal on my sabbath but to swim, crochet or cook as well.

Lastly, Jesus said “The sabbath was made for man, and not man for the sabbath”. This reminds me to do sabbath in a way that is life-giving for me, even if that looks different to what works for others. These guidelines have helped me establish a practice of sabbath which provides clarity and routine, whilst being expansive enough to allow me to give myself whichever type of rest I need at a given time. Occasionally I do just bed rot, but usually I do things that restore me and bring me joy, whether that’s taking a walk or cycle if I have the energy or simply taking my lunch to the beach.

Of course, I’m not always perfect in the way I sabbath. That’s why it’s called a practice. But I do notice I flag later in the week if I’ve skip it. So, even if I occasionally switch the day or bend one of my rules for a practical reason, I keep coming back to it.

If you don’t already, I really encourage you to try the routine of sabbath for yourself. Pick a day of the week that works for you, put some boundaries in place, try it for a few weeks and adjust accordingly. Treat it as an experiment, a gift to yourself and perhaps as a little way to opt out of the madness of modern life for a beat. And by all means, bed rot if you need to. As Brené Brown says: