Article
Change
Death & life
7 min read

How to face the space of death

Losing family and friends across a life, leads Natalie Garrett to navigate the space of death we all face. Part of the How to Die Well series.

Natalie produces and narrates The Seen & Unseen Aloud podcast. She's an Anglican minister and a trained actor.

An experimental image mixes distance people with watery paint-like filters of green .
Jr Korpa on Unsplash.

Death is something I’ve thought about quite a lot. As a bereaved friend, granddaughter, niece and daughter. Also, as an Anglican priest who has pastoral responsibility for those who are grieving and who conducts funerals. And as the mother of children who live in a vicarage and hear a lot about Mummy and Daddy doing funerals, too. Death is a part of our life in a way it doesn’t seem to be in a lot of families. 

My first experience of death was when my grandfather died; I think I was about six. My memories of it are mostly about how the adults behaved. I remember, with uncharacteristic clarity, the evening when Grandma came to tell us that Grandad had died. I don’t remember what she said but I remember the feeling in the room. I remember it feeling as if someone had sucked all the air out, as if we were floating in a strange and uncomfortable space. I remember sitting in the kitchen with my mother not knowing the rules of engagement for this situation and feeling scared by that. 

And in my experience, over the many years since then and in many different situations, I think most people faced with death for the first-time experience that same fear of not knowing how to be in the space of death; “I don’t know what to say”… 

While I was a student, I had a friend who was the only Christian any of us knew. He also had cancer and didn’t have long to live. He made the choice do what people his age who didn’t have a death sentence to carry around with them were doing and went to Uni. He was one of the bravest people any of us had ever met. And at his funeral, a whole load of us from Uni turned up to pay tribute to this amazing young man who had touched so many lives by the way he had so courageously lived with death. 

I could hold that space that I had been so afraid of all those years ago; I could give form and shape to the place of that which we must all face but which we all avoid so passionately in our western culture.

One of my daughter’s godmothers died of bowel cancer. She was one of the most faithful Christians I’ve ever known. When she was diagnosed, the whole church prayed for her healing. But the cancer grew and the chances of survival shrank. But wow did she use her last few months, weeks, days well. She wasn’t afraid of dying so she talked openly about it to everyone and the healing that came from how she lived then was powerful and widespread. She was an incredibly organised person and wanted to make sure she tied up all possible loose ends, like selling her house. She told with such joy about the conversation she had with the estate agent who came round to value her house who asked all the usual questions, “So are you looking to move soon? Where are you going?” I can only imagine his face as she answered with complete honesty about where she knew she was going. And I remember, with a powerful mixture of emotions, the conversation I had with her when I went to say goodbye. “I’ll see you there.”  She said as I closed the door behind me. 

Several decades after that visit from my grandmother, as a grown up and now a Christian, I had the privilege of conducting my grandmother's funeral. Grandma had been such a huge and influential part of my life and it was unthinkable that I should lead the service and not be allowed to be a grieving granddaughter – but it was even more unthinkable to risk someone else doing it, in case they didn’t do it “well”. I visited her in a Chapel of Rest, a couple of days before the service, so that I could say what I needed to say and cry as much as I was able. As I led the service and thus guided my family through the process of saying goodbye to the matriarch of our clan, I could hold that space that I had been so afraid of all those years ago; I could give form and shape to the place of that which we must all face but which we all avoid so passionately in our western culture. Because as a Christian, I know something, I know Someone, bigger than death. 

Death seems to be the final taboo of our culture, the most intimate and unmentionable part of life. Which means we’re not very good at death. And a good death is a beautiful thing. 

There’s a famous story in the Bible when Jesus’ friend Lazarus died. Jesus isn’t there while Lazarus is ill, in fact he isn’t there when he dies – he turns up four days later. In the Jewish culture of which Jesus was a part, there were all sorts of rules to comply with around death and one of the traditions was to gather the local community, including professional mourners to weep and wail, to encourage the expression of emotion.  

Lazarus’s sisters were angry that their good friend Jesus hadn’t been there when they needed him. They were angry that their brother, Lazarus, had died. They were angry and needed someone to blame. I think we can all relate to that. When someone we love is suffering, when someone we love dies, a natural part of the grieving process is anger. And that anger is often directed at God, whether we believe in him or not. 

When Jesus arrives, he generously receives their emotional rebuke, allowing them to give voice to their pain. And then he goes to the grave where Lazarus has been lying dead for four days. And in the shortest verse in the Bible, we are privy to his reaction. Jesus wept. Even God is distressed by the reality of death. Death was never meant to happen; death was never part of God’s good plan for humanity. And it makes him weep. He turns up, unafraid of the raw reality of death and bereavement. 

Of course, in that situation, there was a reprieve – Jesus raised Lazarus from the dead. And the mourning turned to celebration. But of course, although we never hear about Lazarus’s final death, he did die, just like all the rest of us.  

Death is the one thing we all have in common. Different cultures react to death differently. In some cultures, the entire community stops doing normal life and gather round the bereaved. In our culture, all too often, we pretend nothing has happened. We are determined to keep death in a box, packed as far deep as possible so we don’t have to look at it. Death seems to be the final taboo of our culture, the most intimate and unmentionable part of life. Which means we’re not very good at death. And a good death is a beautiful thing. The Christian friends I’ve known who died untimely young deaths have shown me that. People who are not afraid of death, people who know what’s going to happen after they’ve died can pave the way for us to walk into the place of death and find beauty there. 

As we face death head on, we stare into the place of what’s really important. Everyone says glibly that on our deathbed we won’t be wishing we’d spent more time at work. But let’s not wait till our deathbed to work out where we need to spend more time. Let’s learn how to live well now, not hiding from the only guaranteed fact of our future. 

At Lazarus’s graveside, Jesus made the rather elliptical claim:  

“I am the resurrection and the life. The one who believes in me will live, even though they die; and whoever lives by believing in me will never die.”  

When Jesus died himself, naked and nailed to a cross, he took on the greatest enemy of life. And he won. As Jesus rose again on the third day, he claimed victory over death. As Christians follow Jesus through this life, they do so in the assurance of eternal life with him after death. Wow, that’s the place of hope. That’s the place where you can look death right in the face, unafraid. 

The Christian message of hope is a life raft in the cold, choppy waters of bereavement. It gives form and shape to something we don’t understand and don’t want to have to navigate. It gives us courage to accept the truth, when we really don’t want to. Knowing that there is something, Someone, who is bigger than death. And knowing that death – either my own or that of someone I love – isn’t the end of the story gives me the capacity to walk confidently and unafraid through my life towards its inevitable end. And into what’s next. To quote my friend, I hope I’ll see you there. 

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.