Article
Change
Mental Health
4 min read

Don't try and cope on your own

The company of those who care helps when handling traumas.
a man in a wheelchair sits in a subway station holding a sign reading 'seeking human kindness'.
Michael, Boston, 2018.
Matt Collamer on Unsplash.

I did a horrible piece of training at the weekend. You have to do a lot of continual learning if you’re a counsellor, and some of it is hard going. This particular session (with Cruse, a national bereavement charity) was about self-harm, and it contained sheets and slides and lists of the ways in which people hurt, damage and punish themselves. Usually as a way of expressing another kind of pain or because it’s the only thing they can control in a chaotic world. Six hours of it, on Zoom. 

All of us have topics that we struggle with – areas that we find difficult to contemplate – and self-harm is one of mine. It is so far from my own experience of reality that it makes me feel square and naïve and overprotected, and every part of me revolts against it in some way. How terrible that people who are already suffering can only find relief by inflicting further harm on themselves! And some of the injuries are so grievous. Mortifyingly, my main reaction on this occasion was an urge to put my fingers in my ears and tell everyone to STOP IT... not just the trainer, but the poor souls involved in hurting themselves too. Training can be humbling, in the way it reveals the limits of your own compassion to you.  

Clearly though, telling people to ‘stop it’ is not an option, however you might feel! So what to do? 

Christianity, usefully, offers quite a lot of different options for coping with difficult life stuff, so I started considering some of these as I attended to the trainer. The peaceful, thoughtful series of Lent reflections I’ve been listening to recently, for instance… might they help? Um no, not suitable really. Too meditative. You can’t ‘gather the scattered pieces of your consciousness and centre them on God’ when someone is talking about teenagers cutting themselves in ‘risky places, or too deep’ I found. Tranquillity of mind is too passive a response.  

So then I thought about people talking sometimes of being able to hand over their troubles to Christ. He ‘takest away the sins of the world’, as the communion service puts it... his arms are open and he is God, so he can bear the weight. But that didn’t work either. Too mystical. It felt as if action was required, not meek handing over of sorrows because I couldn’t bear to contemplate them. I don’t think we’re meant to dodge responsibility and simply go, ‘Ugh, you have these ones Lord because I don’t want them’.  

So, I sat there writhing inwardly and feeling sweaty and miserable and wishing I was somewhere else. 

This kind, accepting, unshocked conversation was immensely comforting and reassuring, I found. There was safety in it, and daylight, and hope. 

But then I started wondering how everyone else at Cruse copes with such things. I began looking at the other faces on my screen… the 21 of my colleagues who were also attending the training, almost all of them volunteers.  

There was the strong, calm face of Manju, an Indian doctor lady, and Suki, a smiley gappy-toothed African lady, who both work on the triaging team, assessing callers as they come in and assigning them to helpers. There was Richard the First and Richard the Second, both white, one younger than me, one older, both friendly and knowledgeable and kind. There was Naga, a retired nursing sister who looked Scandewegian, and Christina, ditto – except she’d been a teacher. And Nick, not much more than a teenager by the look of him, and Sat, a big Brummie taxi driver in a turban. William looked as if he might be an academic, with his leather elbow patches, and Keith had his sound off due to the presence of a large cat on his desk, which leaned over periodically to miaow into his mike. Lots of others too. 

And suddenly I realised that there was my answer: all those good people, giving up their Saturday because they cared. Listening to stories of suffering because they wanted to understand better, in order to be able to help – to do something for the broken and the sad among us. 

That’s the presence of God, surely: that an army of people turn out, day in, day out, to do things simply because they are good. There is no payment, no special recognition. They have to listen to some very difficult things and contemplate darkness that they wouldn’t necessarily in their own lives. But there they all were that morning, one small group among thousands of others all over the country no doubt – ready to serve, and cheerful and friendly and attentive. 

They talked matter-of-factly about cases they’d encountered and situations which can lead people to injure themselves, and about self-harm as a phenomenon in certain social groups. About how it can be treated, about how it can heal and disappear with the right care and compassion. About how sometimes it can even be preferable to other alternatives. It is much easier, for example, to stop self-harming than it is to recover from an eating disorder. 

This kind, accepting, unshocked conversation was immensely comforting and reassuring, I found. There was safety in it, and daylight, and hope. A feeling that even if someone is suffering, there are others who are able to meet them there, to keep them warm and hold them up. That people do act as the hands and feet of God actually sometimes, regardless of creed or faith or fallenness. 

Looking at them all I felt so much better… and that if they could do it, I could. We only need to work in company together and our collective strength will keep us all afloat, rescuers and rescued alike. ‘Be not afraid’ the Bible says over and over again. It is very much easier not to be, when you’re not trying to be brave by yourself. 

  

Article
Ageing
Care
Change
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.