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The really annoying thing about dying

In his first Notes from Solitude, the death of his dad causes Roger Bretherton to reflect on the relationship and the strange emergence of 'father’.

Roger Bretherton is Associate Professor of Psychology, at the University of Lincoln. He is a UK accredited Clinical Psychologist.

A pocket watch rests next to a black and white photograph of a father lying beside a new born baby.
Photo by Anne Nygård on Unsplash.

The death of my dad was sudden and unexpected. I don’t know why it is that, from the moment he died, I have had to fight the almost irresistible urge to refer to him as father- a term of address I never used about him or to him during his life.  

Perhaps in some psychotherapy session at some point my therapist referred to my ‘father’, and I may have followed suit. And maybe occasionally when socialising with those who seemed a cut above my largely lower-middle class background, I called him father so as to avoid the flat northern vowel sounds that would expose me as an interloper. But that was just to fit in- on all other occasions he was decidedly not father and definitely just good old plain, dad.  

At death he became a classic, a museum piece, a part of history, not the dad who taught me how to ride a bike.

But for some reason the moment he died, it felt like dad wasn’t enough. I now had to call him father - those were the rules. At death he became a classic, a museum piece, a part of history, not the dad who taught me how to ride a bike by panting and sweating my five-year old self round the block, but the father who taught me to be… a man, or something like that.  

The F-word has gravitas, presence, authority. Dads are human, often bewildered, occasionally pissed off, eminently huggable, easily taken for granted - just there. Admittedly, Freud would have lost significant gravitas if oedipal theory had considered common-all-garden dads and not cigar-smoking brandy-swilling fathers. And no doubt the climactic scene of The Empire Strikes Back would have lacked considerable pathos had Darth Vader casually quipped, ‘No Luke, I’m your’re Dad’.  

The curse of the martyr, write Albert Camus, was to have other people tell their story. The principle doesn’t just apply to martyrs, it’s true of all those who die. To be dead is to become a character in other people’s anecdotes. That’s the really annoying thing about dying, we become a topic of gossip, people get to talk about us without the courtesy of ever having to talk to us. We become object, no longer subject. I think that’s why I resist calling my late Dad, Father. It objectifies him, makes of him something that he wasn’t. It, most definitely fails to do justice to all that he meant to me. 

She simply said, ‘It’s your Dad’, and held me tight in a hug that lasted longer than usually permitted in polite company. 

I say he died suddenly. It was a Sunday morning. I was in church at the time. Actually, worse than that, I was on stage speaking to a church. As a psychologist working in academia, I teach and train all kinds of people in every kind of organisation imaginable, but every now and then I get to speak in churches.  

On this occasion I was talking about character, the positive qualities of being – like love, gratitude, hope, wisdom and so on – that make life worth living. When I stepped off the stage my wife was waving to me from the back of the room, which was weird given that we don’t go to that church and she hadn’t come with me. When I wandered to the back of the auditorium wearing my ‘what are you doing here?’ face, she simply said, ‘It’s your Dad’, and held me tight in a hug that lasted longer than usually permitted in polite company. For someone who prides himself on social insight, it shames me to say that it took a while for the penny to drop. We were in the car with the engine running before it finally dawned on me what she meant. 

I try not to make too much of divine timings or fate, but there was something odd in the timing of getting that news. In that month I had addressed church congregations three Sundays in a row- which, as someone who is generally lazy and prefers not to work weekends, is an unusually intense frequency. But over three successive Sundays I had reflected aloud with those congregations that there were prayers that had accompanied the various stages of my life. Prayers that I found myself praying, almost as if they were prayed through me, as if they had chosen me rather than I they.  

In my twenties I had found myself praying as regularly as a heartbeat, ‘God do whatever you need to do with me, to make me into the person you would like me to be.’ It was a radical invitation for God to put me through whatever was needed to become who I was meant to be. But then the prayer faded. Its visit was over, it had done its work and it moved on. But as I addressed the congregations on those three Sundays I mused aloud that while the prayer of my twenties had departed decades before, I found a new prayer stirring in my forties. Now as the father of teenage boys, my new prayer was, ‘God do whatever you need to do with me to make me the father you would like me to be.’  

In the weeks that followed, people asked me whether I had had a good relationship with my dad. The most accurately answer was: we had the best relationship of which we were both capable. We both tried in our own ways to deepen our connection, but we were like the lovers in a romantic comedy; we always managed to miss each other. When he tried with me, I didn’t want to know. For several years, he left a book lying around at home that he wanted me to read. I never saw anyone touch it, but it moved around the house under its own steam. It was by my bedside, in the toilet, on the dining room table…  Macavity the Mystery Cat would have been proud. It was called, Things We Wish We Had Said. We may have wished, but we didn’t say. I never read it. Years later, when I tried with him, he was too flustered to respond. Both of us in our own ways lacked the courage to connect any deeper. But I was never in any doubt that he loved me, and I him. 

When he was alive I was most aware of how different we were. I defined myself in opposition to whatever he was. If he was gentle, I was assertive. If he was indecisive, I was ambitious.

He died of a heart attack on a Sunday morning asleep in bed, while my Mum was at church. Almost immediately his absence prompted a profound change of consciousness in me. When he was alive I was most aware of how different we were. I defined myself in opposition to whatever he was. If he was gentle, I was assertive. If he was indecisive, I was ambitious. If he was inexpressive, I was articulate. If he was like that, I was like this. And yet, almost at the very moment of his death, a reversal of awareness occurred. I started to see just how very much like him I was. His gentleness, his uncertainty, his scepticism, his care, his humour, were all mine. 

There is a rule in family therapy, that adult children relating to their parents should set their expectations to zero. We never truly see our parents until we stop viewing them through the lens of our own desires; what we wanted from them but never got. Until we do that our lives don’t really work, we sit around waiting for an impossible transformation, a payday that never comes, the moment our parents become exactly how we would like them to be, not as they are. For me, that moment of acceptance for dad only came when he was gone, I accepted him as he was when there was nothing left to accept. I don’t write this with any great sense of guilt or regret at opportunities lost, more with a sense of gratitude for what was given but often taken for granted.  

Oddly though, in the shadow of that seismic shift in my interior furniture, I detected the stirrings of an answer to my own prayer to be a better father. No longer compelled to define myself in contrast to what he was, I was freed to be what I was- both like and unlike him, and to be fair, more like him than I cared to admit. At some visceral level I came to appreciate how much of myself originated with him. I came to accept myself as a dad and my dad as a father.

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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.