Dying well: what is neglected needs to be put right

How each of us can prepare ourselves and those we leave behind.

Matthew Hutton

Matthew is the author of Your Last Gift – Getting Your Affairs in Order.

A group of grieving friends with their hands on each others backs.

The Good Funeral Guide on Unsplash.

In their November 2023 Theos report Love, Grief and Hope: Emotional responses to death and dying in the UK, Madeline Pennington and Nathan Mladin produce the surprising finding that, over the past year, one quarter of Brits had thought about their own death at least once a week. They go on to consider related emotional responses, chiefly fear. But, however often we think about death (maybe never), what do we do to prepare for the certainty of it, when we are used to making all sorts of preparations for practically everything else in our lives?

First, we can, without being morbid, live our lives in broad terms in the consciousness that we are mortal (and, if you will forgive me as a classicist for delving into Latin, living ‘sub specie aeternitatis’ which means ‘from the standpoint of eternity’). Second, there are things we can do in terms of getting our house in order, both for our own peace of mind and for the benefit of our loved ones and those we leave behind. This is both spiritually and materially, though I would want to argue as a Christian that the whole of life (whether in this world or in the next) combines both aspects.

Having had quite a feisty and competitive brother/sister relationship (with not a little ribbing from her about my own faith), we came to enjoy the warmest possible sibling love for and appreciation of each other.

My dear sister Debbie died aged just 49 in July 2005. She had telephoned me only eight months before to tell me of the grim diagnosis of stage 4 lung cancer, saying that there were two things she needed to sort out: her will and her relationship with God. I replied (as a Christian and as a private client lawyer) that we could sort both those out. I referred Debbie to a vicar I knew in a church round the corner from where she lived. She was a bit hesitant, saying that, having kept God at arm’s length for all her life, wasn’t it a bit presumptuous now to be knocking on the vicar’s door? I suggested that she should think of it from his point of view, in terms of job satisfaction: that after all was precisely what he was there to do, telling people about God and helping them to find a personal faith.

So that’s just what she did, coming to that faith herself following time with the vicar, with me and with other friends, in the February. And she died as a self-proclaimed Christian five months later. For me, the most precious thing apart from knowing that she would be with Jesus forever was this: having had quite a feisty and competitive brother/sister relationship (with not a little ribbing from her about my own faith), we came to enjoy the warmest possible sibling love for and appreciation of each other.

Second, my mother, whose ideas of Christianity were never terribly clear, though she was a very faithful listener of my sermons, came to faith (as I saw it) just 12 days before she died in May 2010. It was at a home communion given by one of the local clergy team that, as she received the bread and/or the wine (I forget which), a most powerful voice within my spirit told me that she had received Jesus. And that night, by way of confirmation, my wife Annie had a very clear dream of my mother (it had to be her, wearing her most distinctive pink kaftan) dancing at the foot of the Cross.

We lived just five minutes from Mum and, again, my early evening visits to see her, to chat, to read from the Bible and to pray were somehow transformed. While I am not sure that she had the same clear consciousness of having moved from darkness to light as had Debbie, I was quite clear that she had – and noted in my prayers at her funeral that at the end she had received Jesus.

Third is my very close friend Jim who died aged just 67 in November 2020: I had talked to him about the Christian faith on a number of occasions, but he simply didn’t want to know. Then just one month before he died, in a telephone conversation with him in hospital Jim asked me to explain it, from a position of dire physical need and wanting to hear. I didn’t know how ill he was and, having explained the essence of Christian belief in very simple terms, prayed with him over the telephone.

As it happens, Jim survived another month at home, during which time I was able to visit him four times and (now having been ordained) give him and his Christian wife Judi Home Communion, as well as pointing him to and talking about Mark’s Gospel and praying with him. His new faith led to a new intensity in our friendship. Jim was quite clear about his new relationship with Jesus, seeing himself as the lost sheep, on which I preached at his funeral, before (as a profoundly moving experience) conducting his burial.

None of us of course knows for sure what happens after death. But Christians are by God’s grace given this ‘sure and certain hope’ of an eternity to be spent with Christ in God’s new creation. And it’s the clear Christian message that that eternity starts now, when we come to faith. There’s a new relationship with God in Christ and, which is my experience, with our brothers and sisters in Christ, especially precious when those folk are close to us anyway.

And then of course, perhaps most importantly, what is broken needs to be put right.

That’s the spiritual aspect. What of the material – by which I mean all the practical ‘stuff’: those who are left behind having to sort out our possessions, Inheritance Tax where payable and a whole host of other things? It is a subject touched on in the Bible, perhaps surprisingly. Consider Paul writing to Timothy that a person should provide for their relatives and especially close family), which I take it would include post-death as well as lifetime provision. And then supremely of course Jesus in providing for his dear mother by entrusting her to his beloved disciple John.

In this context, I can do no more than make a few pointers, which with other suggestions I develop in my book.

There are what I call ‘The Three Essentials’: Lasting Powers of Attorney in case of mental incapacity (for both property & financial affairs and health & welfare), Wills (including the all-important choice of executors) and funeral arrangements. Just 44 per cent of UK adults have made a will.

Then there’s a host of other things, including appointing guardians for any minor children, providing for dependent relatives and making arrangements for pets. What about access to digital assets, for example? Let alone dealing with things about the home.

And then of course, perhaps most importantly, what is broken needs to be put right - relationships, where forgiveness could be sought or given. And, more widely, are there people you want to spend more time with, things you want to do or places to visit?

My suggestion is that dying well embraces first of all the peace which comes from the belief that Jesus has died the death my sins deserve and consequently a restored relationship with God our Heavenly Father; and second, making what practical arrangements we can in advance, to ease the stress of those we leave behind in sorting out our affairs.

Matthew Hutton is the author of Your Last Gift – Getting Your Affairs in Order.

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