dementia

Granny’s funeral – “un oeufs an oeuf”

“What’s the best thing that women have compared to men?”

“Nipples that work!”

My mum Emily had a  weird and wacky sense of humour and my brother Ned was first up at her funeral to reveal it.  Within minutes of starting his eulogy he had recounted an early joke of Emily’s that set the tone for an  evening of unexpected delights as we shared memories of our wonderful mother and grandmother.

Emily Norah Edmonds 20th April 1917 – 26th November 2015

Emily died while Jane and I were still on our travels in Central America.  We got the news while stuck on the border between Honduras and El Salvador.  The coach we were on was being searched for drugs and with an unexpected internet connection, Jane received a message that our daughter Rosa had tried to contact us.  We phoned her straight back.   Good or bad, significant news  always seems to be associated in my mind with a still image; like a photograph it remains imprinted on my memory bank yet often has absolutely nothing to do with the news itself.   With tears trickling down, I listened to Rosa’s account of her Granny’s last moments, while out of the side of the coach I watched a truck driver laboriously unpack the tarpaulin from his load in readiness for a customs inspection.  Like an image on a book cover this is what I see when I recall the news of my mothers death.   In the scheme of things two random events caught in my imagination – a man bent over struggling with the weight of his labours and my mother’s lifeless form in her bed at the residential home she had lived in for the past three years.    But this scene was all I had until we returned home a month later and I could visit her in the funeral parlour.    At which point the fact of her death became real … really real.    When we heard the news of Joshua’s death an image closely associated with that moment also has me looking out of a window and two police officers walk up our garden path.   It’s as if these images get stuck in time and the work of grief is to gradually erase them to reveal a truth that we can at last assimilate.    In any case I am a firm believer of viewing the corpse, not just as a way of helping us to recognise the unassailable fact that our loved one has died,  but as a first step to rebuilding and continuing our relationship with them.

7th January 2016 – we manoeuvre Emily’s casket prior to bearing her into the funeral
Respect for the dead

Relationships seemed to figure high in our speeches, eulogies and conversations at Emilys funeral – or celebration of life that many would prefer to call it. Ned and myself both referred to the idea that our relationship with Mum was “kind of complicated” – in that the way we were brought up, sent away to boarding school, and discovered new things about our past only after Dad had died.  These and other testimonies all started to build a picture not just of who Emily was but what she meant to all and each of us differently.

For grandson Joe it was childhood visits to their house in Sussex  where he discovered  “that old wooden box of brick dominoes that lived in the cellar.  Hours were spent constructing a domino rally down the winding stairs and through into the living room

Memories of signatured and scribbled words from generations past on wooden domino blocks… Wow, playing at Granny’s really rocks!

Joe’s most terrible rhyming puns would resonate for many; Emily’s unlikely love of snooker on the telly elicited this

Dozing off in the armchair was sheer heaven, We’d never quite stay awake for the big break 147.

For grandson Jonny it was Emily’s warmth:  “a warmth of welcoming visitors and those she loved dearly.  The kettle was put on, the biscuit tin was stocked, the table was set – even the breakfast table.  If you were a vegetarian, she found it slightly amusing and somewhat confusing – “not even some black pudding, Jonny?” 

And he recalled another of Emily’s favourite jokes – one that we have all heard over and over again and will continue to enjoy, not for any intrinsic hilarity in the joke, merely because it is and always will be .. sooo Emily –

“Why does a frenchman only have one egg for breakfast?”  “Because un oeuf’s an oeuf!”  

Granddaughter Claire read from a letter her granny had sent in which she made reference to the Australians seeming inability to laugh a themselves – unlike ‘us limeys’.  Written in 2000 her letter reveals the first signs of the dementia that would take hold of her in the years to come.  She had just moved to be closer to us in Chalford and writes “space is limited and I only have one bed I can shove things under.  The fridge is so small beers and cokes have to go under the dresser but having packed everything away I have difficulty remembering where I put things…”

Jane had been looking for photographs of Emily and came across a postcard that Josh had written to his gran from Vietnam.  “Hi Gran, Josh here!” (we always asked people to announce themselves at the beginning of a letter or card)  “travelling is one of the most amazing things ever” he continued “it is tough being on my own but I am learning so much and meeting loads of people all the time”     The postcard was unsent and had come back with the rest of Josh’s belongings; it now reminded us in the most poignant way how important Emily was to all her grandchildren.

Emily’s Grandchildren, Nikki, Claire, Jonny, Ben, Joe and Rosa
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Film showing at Emily’s funeral
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Eulogy from grandson Jonny

All these contributions speak to a relationship as much as they do to the person.  Joe’s experience of playing at his Granny’s house, Jonny’s enticement for us all to remember and share in the joke, Jane’s reading of Josh’s desire to connect with his Granny and tell her his news and Claire’s precious airmail.

Along with film clips, photographs on the walls and on the screen, we had built a small ‘set’ – a replica of Emily’s front room with her chair, her knitting basket, todays Times crossword, a bowl of humbugs, all her actual stuff but triggers to memories and the life that once was.   Forget multi media, this was ‘interactive’ in the best possible way as people took turns to sit in her chair or add their own memories – a scrabble bar with the word ‘twitten’ – meaning ‘alleyway’ or path between two hedges and specific to our home county of Sussex (and a good score in scrabble apparently as it uses all seven letters).   Emily was a wizz at the Times crossword and would normally finish it by nightfall – today’s remains only partially completed!

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So in a very real way, mourners for Emily were able to recall not only their memories of the person, but to actively engage with the space in which she lived – a truly visceral experience to be remembered in its own right and carried with us as part of our on going connection to her.  But it was also fun, really good fun which had Josephine (at just two and a bit, our youngest mourner) unravelling a ball of wool as she wandered around the guests and plenty of laughs as we watch clips from the film I had made in 2007 which featured Emil and her friend Yvonne discussing life after death and getting stuck in the lift.

Another departure from the norm (though this only became apparent to us afterwards) were the volunteers of the bearers for Emilys casket – we had the men carry her in and the women carry her out, something many remarked they had never seen before.   And for Jane in particular a special moment; one she would not have been comfortable with had she not been so up close and personal to death these last few years. Coming from a family where the D word was never mentioned, helping to carry Emily’s casket was for her a kind of rite of passage – she felt that there was something so primitive and powerful about this part of Emily’s journey being in the hands of women.

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My beautiful mother then spent the night in our living room, an honour that meant so much for us.  Our home is closest to where Emily lived for the last 15 years and it only seemed right and proper that we should host her one more time.

Again to have a dead body in your living room feels a bit untoward in this day and age – I don’t know why given what an ancient tradition this is.   In days past you might even have invited a photographer to make an image of the dead person such was the lack of squeamishness about these things.   You certainly wouldn’t have balked at having an open coffin.    For us it meant a wee bit of alone time in which we could lift the lid and say one more ‘goodbye’, to acknowledge that in the stillness and the coldness of her frame,  yes she really is gone but also in that very stillness, in her deadness our relationship though changed could still be very much alive .. my mama, my mama, my mama …

I think we had got to know my mum particularly well in the last chapters of her life (certainly in a completely different way from when we were children)  including the years in which the dementia progressed, years in which even while her memory and her capacity dimmed, her straight talking, her self effacement and her humour always shone through –

How you doing today Mum? Much the same, old and doddery.  You’re looking well.  Am I?  I don’t feel it.  It’s about time you put me in the oven

Emily may well have long fallen out of love with life, but her love for us never died.   If only we could have honoured her dying wish of putting her in the oven with as much flair and bounce as we’d managed at the celebration of her life though how we could have done that does stretch the imagination.

The service at the crematorium the next day was a more solemn affair – but by having two ceremonies we bucked a certain trend articulated by Su Chard the celebrant who did for both Josh and Emily – importantly we had separated two necessary (but normally conflated) rituals attendant at someones death: the funeral and the disposal of the body.

Thanks for reading

Jimmy

January 2016

This post appears both here on BEYOND GOODBYE and on our blog for The Good Grief Project

(for Su’s ideas on the nature of contemporary funerals see our film Beyond Goodbye )

and here is a short (i.e. edited) conversation between Emily and Jane that should amuse … recorded on her phone in Steppes, the residential care home she lived in for three years.

We’d like to thank Harriet Lewis for the wonderful Paella that rounded off the evening and James Kriszyk for some great photos of the day.

THE WAITING ROOM – first public screening

THE WAITING ROOM SHOWN AT DEMENTIA CONFERENCE

A short version of Jane’s film THE WAITING ROOM was the centre piece of the 8th Annual Conference on Dementia and End of Life organised by The National Council for Palliative Care and the Dying Matters Coalition and held in London on 4th December 2013.    The film is about the time Jane’s Dad spent on a psychiatric ward and was programmed to illustrate the lived experience of people living with dementia – it seems that people were truly shocked by what they saw and we have been humbled (and pleased) by the response to the film.

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We have been making The Waiting Room for over five years, long before Josh died.  Filming started when Jane’s Dad, (Josh’s Grandpa) Gerry went into hospital in 2008. Then aged 92, he had early stage vascular dementia and after her Mum Pat had a stroke and could therefore no longer look after him at home, efforts were made to find a suitable place for him in a local residential home but none were available. So Gerry was admitted to the Ailsa Psychiatric Hospital near Ayr, their home town in Scotland.

This was a far from ideal solution to the problems faced by the family, and with the thought that surely things would improve for both Gerry and Pat, we began to film with them both. As it turned out Jane spent more and more time trying to deal with a system (its called the NHS!) than actually being with her parents as they moved into the final chapters of their lives.   She now sees these as lost years rather than last years.   But  as the dementia progressed to its inevitable end stage,  Jane’s efforts to find a more ‘person friendly’ care package, a more stimulating environment,  a more comforting and less intimidating final ‘home’ for her dad,  were mostly in vain. For reasons we believe were the result as much as the lack of care as of the progress of the disease, Gerry’s well being went into steady decline and he never left the hospital.   He died earlier this year and you can see our farewell tribute to him here – FAREWELL GERRY.

FAREWELL GERRY was culled from the many hours of footage we have of Gerry and is a very different film to THE WAITING ROOM which had its first public screening at the Conference for the NCPC/Dying Matters Coalition.    Shown at the start of proceedings, the film quickly became a talking point for the remainder of the day as delegates recognised it as a cautionary tale for a health service faced with an ever increasing ageing population many of who will die with dementia.   You can watch it here.

This version of THE WAITING ROOM is 81/2 minutes long.   It should and could be longer – it should and could be made available as a educational or training resource for all in the caring professions.    But without adequate funding we are not currently in a position to develop the project further.   So …  if you or you know anyone who can help us achieve this goal, please do contact us.

Here’s what people have been saying about THE WAITING ROOM

“amazing man, loved by his family failed by the system “ – Beth Britton @bethyb1886 (Leading Dementia campaigner and blogger)

“harrowing to see footage of a highly intelligent inventor shut in an empty room without stimulation.   Jane has portrayed a hospital specialist dementia unit but it seems as if there’s no insight into the person they cared for”   Simon Chapman @SimonSimply (Director of Public Engagement,  National Council of Palliative Care)

“very moved by Jane Harris’ film about her Dad.   Reminds us to look for the person, not the disease”  Emma Hodges @StGilesDCEO (Deputy Chief Executive of St Giles Hospice

“a brilliant film”  – Professor Alastair Burns (National Clinical Director for Dementia – Dept. of Health)

“a powerful film – No person with dementia should spend four years in hospital” – Sharon Blackburn (Communication Director, Dementia Action Alliance)

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Unfortunately we didn’t have the following information at the screening of THE WAITING ROOM at the conference.    We have only just had a reply from the NHS trust for Ayrshire and Arran as to the total cost of Gerry’s care while he was in hospital.     And it is staggering – the cost per day for a patient in an Elderly Mental Health Bed is £408.      So the total costs for the four years that Gerry was in hospital amounts to close on £581,000.   But this is a minimum estimate and does not include the extras for two hip replacements and their aftercare, antipsychotic drugs, and the one to one observation that Gerry required to stop him getting out of his chair.      Compare that with the costs for keeping Jimmy’s mother Emily (of a similar age and with a similar condition – advanced alzheimers dementia) in a private residential home  – this is £650 per week or a possible £135,000 over four years – less than one quarter of the cost of Gerry’s care.     This raises so many questions we can’t go into here but if you’ve watched the film you will know that  this is money not well spent.

LINKS

www.dyingmatters.org 

www.ncpc.org.uk

www.alzheimers.org.uk

www.bethbritton.com

Farewell Gerry

 

 

 

 

 

Saying Farewell to Gerry – a timely death at 95

 

Gerry Harris

12th March 1918 – 28th January 2013

Death is always a shock. Even though Josh’s grandpa Gerry had been living with dementia for a good many years; even though he had recently been moved to the end of life ward at the hospital where he spent the last four of those years;  even though we had been told that his temperature had dropped to 31 C, that he had been put on the Liverpool Care Pathway and was not expected to last for more than a few days or weeks; even though we had visited him and could see for ourselves that Gerry would not “be getting up from this one”, still death comes as a shock.

Josh’s Grandpa is Jane’s dad and we loved him very much.  That is why his death, his life no more, is still hard to take in.  Gerry was 95 and had had a good and inventful (sic) life.  The obituary in the Glasgow Herald headlined him as “businessman, inventor and pilot who taught Prince Philip to fly.”   He was nearly 80 when his last creation, a revolutionary fire fighting device, won the John Logie Baird Award for innovation in 1996.   We are sad to see him go, but we are at peace with his passing.  Unlike Josh’s, Gerry’s death is in the natural order of things.      If there is a timetable for death, if there is fairness in death, then clearly Josh died too soon and Gerry perhaps too late.

In hospital – June 2012

But justice is a concern for the living – for death itself there is no moral dilemma.   It remains for us who would still breathe to make an account of these deaths, to mourn them as we do, and to wonder if there can be anything like a good death.

By strange coincidence, on the weekend between Gerry’s death and his funeral, Jane and I  had attended a symposium on “what makes a good death”.   Organized by the Wellcome Foundation, and intended to contribute to a growing conversation about death and dying, we were both curious about how others were dealing with and talking about this so-called ‘difficult’ subject.    The show opened with various readings from literature including Roger McGough’s poem …

Let me die a youngman’s death
not a clean and inbetween
the sheets holywater death
not a famous-last-words
peaceful out of breath death

When I’m 73
and in constant good tumour
may I be mown down at dawn
by a bright red sports car
on my way home
from an all night party ….

It continues in similar vein.     To my mind a rather distasteful attempt to glamorize death, to sanitize it and to take death away from its natural place as a conclusion to life’s inevitable story.    In these lines you can find both Gerry and Joshua but neither of these deaths were in reality what McGough would wish for as his own ‘good’ death – Josh never got to be 73 and Gerry, instead of a slow decline to a morphined non-existence would, I suspect, much rather have gone out with a bang.

The day before Gerry died

What the poem does point to though is the wish to have some kind of conscious control over how we die.   In modern society this is presented almost as a consumer choice; the planned for death, with living wills and demands for legally assisted suicide.  The more agency we have, the better our death will be – if it is we, that is, who are doing the dying.     But what of those left behind?    After ‘our’ death it is still left to the living to mourn the nature, tragic or otherwise, and the consequences of our death.    So perhaps a better question to be asking is “who is the good death for – the living or the dead?”    Or both.    If we understand our lives, our individual selfish lives to have meaning only in relationship with others, (…… no man is an island etc) then our dying and our being dead can only find fitting resonance with the survivors of our death.    For both Gerry and Joshua who now know no more of their lives, this is actually meaningless.    For us it couldn’t be more relevant.

While Gerry’s was to be expected, the unnatural circumstances of Joshua’s death precludes an easy ‘inbetween the sheets’ kind of mourning as we struggle to continue our relationship with him.   His life cut short creates a vacuum not only in our hearts but also in the story we would want to tell of him: we fill it by projecting our wishes and ambitions for him on to the future he never had.    If Josh were alive now, he’d have found another job, he’d have found another lover, he’d have traveled again, set up his own video production company making underwater music films, he might even have gone back to college.  Our dreams for Joshua will forever haunt our nights and days, but we have no need for such fantasies for what an old man might do with the rest of his life.     A good death is perhaps possible only after, what McGough’s poem doesn’t reveal, that which makes for a good and full life, as lived by Jane’s Dad, Gerry.

How then to tell of the life that gave life – that gave life to Jane and thence to Josh and our other children?    I have known Gerry for as long as I have known his daughter.  My first encounter with him was when he took us out for dinner soon after the two of us had got together.  I was immediately taken and excited by his anarchic behaviour, his unabashed sociability and his seeming need to display both as publicly as possible.   If there was a table to dance on he’d be the first on it.

Gerry Harris was an engineer by trade, but I knew him best as a difficult father, an over protective husband, a terrible businessman, a gifted if slightly bonkers inventor.    Gerry’s triumph was BLASTER, a water jet that started life as a new form of garden sprinkler but ended up as a fire fighting device that could drench flames in seconds and with minimal water damage.   Gerry had first showed me his creation a few years before and we now have precious video footage of him running round his garden in the pouring rain as he attempts to activate a series of sprinklers made from bits of bicycle and beer bottle caps.   These rudimentary  contraptions were to become BLASTER or … wait for it – ‘Boundary Layer And Surface Tension Energy Release’.  By introducing a carefully positioned rotor blade in the path of the water jet Gerry had found a way to turn water (a liquid) into water vapour (a gas), so reducing the amount of water needed to put out a fire by a thousand fold.   Gerry was not only well into his 80’s when he discovered this but also well on the way to establishing a principle that may still revolutionize fire control.    

If Gerry had a ‘good’ life how was his death?  Or how was his ‘dying’?

Gerry began his last journey 5 years ago when after a series of small strokes he developed vascular dementia, a cruel disease that slowly robs the person of their capacity to reason and to hold thoughts in any meaningful way.  From our visits to see him over this time it’s difficult to say whether Gerry’s emotional being, his own personhood, suffered a similar decline.  The one question the family always seemed to be asking – how much of Gerry is still there? – was never really answered.  But death stalked that question at every turn as the frustrations of the disease and its affects on other members of the family began to take its toll.   That and the inadequacies of the care system that Gerry seem to be caught up in – all seemed to conspire to invite death’s continual refrain – when shall you summon me?

In fact Gerry exhibited super human strength in his will to stay alive.   Whilst in hospital he broke his hip twice occasioning major surgery both times and was later sent back to the ICU with a collapsed lung.  Gerry was fit.  He had incredible energy both mental and physical. Despite the progress of the disease Gerry remained bored out of his mind, and despite being confined in his chair, no longer able to walk, he remained constantly on edge with an almost manic inability to sit still.    Ironically it was this energy that would keep him living with the distressing effects of dementia for so long.

You can see something of Gerry’s life in this short film we prepared for the family to watch the day before his funeral.    An early scene in which Gerry recites one of his favorite poems was filmed shortly after he was admitted to hospital.   Click on play button in the bottom left of the screen.

Putting this film together was, as you might be able to imagine, a rather delightful experience, sad but rewarding and I was honoured to be able to do this for Gerry and for Jane’s mum Pat and her brothers.  It felt like I was contributing to the postscript to a long and successful life story.     What I was not doing was dealing with a trauma.   In that sense their was no distress, no break down of confidence, no insecurity, no fear, all of which were so present in the months following Josh’s death.     Equally and despite the initial shock of witnessing Gerry’s lifeless form, I suspect we will be able to ‘move on’ from his death in ways that we are not able to with Josh.   This I think has to do with the way that we as parents are changed as a result of the death of our child – fundamentally and irrevocably changed.

By contrast to Josh’s, Gerry’s funeral was a very small affair, this partly because of Jane’s mum’s wish to keep it very low key and private, but also because of the simple fact that by the time you get to 95 you actually don’t have many friends left to bid you farewell.   Josh of course was known by many, old and young.    If there over 300 who came to say goodbye to Josh, just 12 of us attended Gerry’s funeral not including the celebrant and the funeral directors.   But it was no less meaningful for that.    There was something poignant in its very ordinariness that gave comfort to the idea that death is survivable, no matter if it’s your grandfather or your son.

Jimmy (Feb 2013)

photos by Jimmy and Rosa

 

 

Click here to see more photos from Gerry’s life

….  and for our film about Josh’s fundraising efforts for Alzheimers Scotland

click here JUMPING FOR ALZHEIMERS