By coincidence while Jane was helping to launch the Dying Matters BEING THERE Â campaign in London last month (2nd November 2014) our older son Joe was in Mexico visiting Hollie, one of Josh’s best friends. Â Â Â The Dying Matters event was the focus of their annualÂ Day of the Dead celebrations and guess what, Joe and Hollie were remembering Josh at the real deal in Oaxaca, birthplace of Las Dias de Muertos. Â Â Here is his account of their day …
Experiencing Dias de Muertos – Oaxaca, MexicoÂ
We experienced Dias de Muertos here in Mexico in Oaxaca City. Each year Mexicans celebrate the dead leading up to 2nd November (Dias de Muertos) by creating colourful altars for their loved ones that have passed, dressing up in death related costumes and face paints, drinking and eating and holding street parties. Within Mexican tradition, the 2nd of November is kept for the dead to return to this world and share in the offerings given to them.
Having lost aÂ brother andÂ a best friend, Hollie and IÂ Â wanted to honour our Josh this past weekend and ensure that his presence and soul was celebrated. We created a colourful mobile made of traditional Mexican tin, that carried pictures of Josh on star shaped card and little skeleton figurines and a sacred tin shaped heart. We visited a candle lit vigil for the dead in a cemetery just outside of Oaxaca Centro. The scene was magical.Â Night had fallen but the cemetery was lit up with candles, bright marigold flowers and the sound of music from people playing instruments and singing beside the graves of their lost ones.
We found a suitable tree that Josh could now call his own and hung his mobile to a branch. We scattered Josh’s ashes at the base of the tree and shared a small bottle of tequilla with Josh whilst sitting with him.
Although in the UK, it is not un-common to see relatives and friends visit Â a cemetery and to hold time with a lost loved one, this experience felt very different. A more shared experience and less private, where visitors walked in between the dead and were invited to learn more about them. The dead felt more alive due to the decoration of their graves and how families were sitting, eating, drinking or even singing or having a smoke with them.
We shared our love of Joshua with a mother and a wonderful young child who became instantly interested in Joshua’s memorial mobile. He asked questions about who Joshua was to us and it was nice for us to introduce him to Joshua. He was so taken with the mobile that Hollie simply had to give him the sacred tin heart for keeps! He was chuffed to bits.
Here in Mexico, people’s relationship with death seems very honest and open. The dead are not forgotten. They are celebrated and seen as still part of this world.
Josh’s mobile still hangs in the cemetery and now he has two trees in this world he can call his own.
to view more photos from Joe’s trip to Mexico click here
Almost half of Britons (47%) say they would feel uncomfortable talking to someone who has been recently bereaved, and many bereaved people have experienced negative reactions to their grief, including people avoiding them and the loss of friendships, according to a new study released by the Dying Matters Coalition.
This is a finding of a special report commissioned by Dying Matters to coincide with the launch of a new campaign designed to support people with what to say andÂ do after a friend or family member has been bereaved. The BEING THERE initiative comes at a particularly poignant time for many bereaved families – this is the lead up to Christmas, a time when, as in our case, the absence of a loved one is more keenly felt.Â BEING THERE is addressed to people who like many of our friends have naturally moved on their lives and away from the intense pain that we feel. This is normal but it is also very hurtful – the affect upon the bereaved is to suffer not just one loss but many … with death being such a taboo subject in our culture, grief too becomes a feared emotion and all too often our friends and family shy away from a state of mindÂ they see as uncomfortable,Â disruptive and avoidable.
So the BEING THERE campaign is a really good starting point for all those wanting to know what to say and do as well as what not to say when a friend or family member has been bereaved. Â Here is a link to the Dying Matters press release :
Dying Matters is a coalition of a number of organisations from across the country set up to promote public awareness of dying, death and bereavement. Â Â The Coalitionâ€™s Mission is to help people talk more openly about dying, death and bereavement, and to make plans for the end of life. This, they say, Â will involve a fundamental change in society in which dying, death and bereavement will be seen and accepted as the natural part of everybodyâ€™s life cycle.
Josh’s mum Jane is on their advisory committee and contributed to the launch of BEING THERE Â with a number of radio interviews across the UK including BBC Radio 5 LIve, Radio Scotland, Gloucestershire and London and the West Midlands . Â This is what she had to say about her conversations around Josh…Â â€œWe discovered that whenever we talked about our son Josh to friends and family there were awkward silences and people just didnâ€™t know what to say or do for the best or even avoided us altogether. The first Christmas after Joshâ€™s death was particularly upsetting, especially when we received Christmas cards that didnâ€™t even acknowledge his death. However, talking about our loss, remembering Joshâ€™s life and being allowed to say his name really helped us, as did the kindness and support from those people who went the extra mile to be there for us.â€
The Compassionate Friends, the charity which supports parents following the death of a child of any age, has launched a guide to getting through Christmas when someone so important is missing:Â Coping with Christmas
Annie BroadbentÂ is the author of new book ‘We Need to Talk About Grief’, which gives first-hand advice on supporting someone who is grieving:Â visit Annie’s website
Kate IbbesonÂ has written a blog about feeling unsupported at Christmas following the deaths of her parents:Â Read Kate’s blog
Cruse Bereavement CareÂ offers a helpline for bereaved people all year round, including throughout the festive season:Â Cruse Bereavement Care
SilverlineÂ provides information, friendship and advice to older people who may feel alone; the free helpline is open throughout Christmas:Â Silverline
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. Â Â 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.
We have been making The Waiting Room for over five years, long before Josh died. Â 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. Â She now sees these as lost years rather than last years. Â But Â as the dementia progressed to its inevitable end stage,Â Jane’s efforts to find a more ‘person friendly’ care package,Â a more stimulating environment, Â a more comforting andÂ less intimidating final ‘home’ for her dad, Â 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. Â Â 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. Â Â 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 healthÂ service faced with an ever increasing ageing population many of who will die with dementia. Â You can watch it here.
This version of THE WAITING ROOM is 81/2 minutes long. Â 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. Â Â But without adequate funding we are not currently in a position to develop the project further. Â So … Â if you or you know anyone who can help us achieve this goal, please doÂ 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. Â Jane has portrayed a hospital specialist dementia unit but it seems as if there’s no insight into the person they cared for” Â Simon Chapman @SimonSimply (Director of Public Engagement, Â National Council of Palliative Care)
“very moved by Jane Harris’ film about her Dad. Â Reminds us to look for the person, not the disease” Â Emma Hodges @StGilesDCEO (Deputy Chief Executive of St Giles Hospice
“a brilliant film” Â – 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)
Unfortunately we didn’t have the following information at the screening of THE WAITING ROOM at the conference. Â Â 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. Â Â And it is staggering – the cost per day for a patient in an Elderly Mental Health Bed is Â£408. Â Â Â So theÂ total costs for the four years that Gerry was in hospital amounts to close on Â£581,000. Â But this is a minimum estimate andÂ 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. Â Â Â 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 Â – this is Â£650 per week or a possible Â£135,000 over four years – less than one quarter of the cost of Gerry’s care. Â Â This raises so many questions we can’t go into here but if you’ve watched the film you will know that Â this is money not well spent.
More nice news – SAY THEIR NAME has been nominated in the Good Funeral Awards 2013, to be held in Bournemouth on 7th September. Â Â The video, which we made for THE COMPASSIONATE FRIENDS, is in the running for the Best Internet Bereavement Resource and I have to say we are honoured, excited and encouraged by the recognition it has received.
Now in its second year, The Good Funeral Awards is actually the brainchild of Charles Cowling who writes, promotes and speaks up on everything do with making sure that the funeral you have is the one you want. Â Â Â As well as being a consumer guide to the Funeral Industry, Cowlings blog and book “The Good Funeral Guide” Â is an advocate for independence of mind, spirit and body, especially if its a dead one. Â Â Â Interestingly, though the awards are primarily about the ‘funeral world’ with other catagories like ‘The best Gravedigger ofÂ the Year’, ‘The best Embalmer of the Year’ and the “Eternal Slumber Award for Coffin Supplier of the Year”, they are also shine a significant light on our understanding of death and bereavement in contemporary society. Â Its probably true to say that ‘gallows humour’ mixes with serious intent as more than 75 nominees compete for 15 different awards.
This years ceremony will be hosted by Pam St Clement who as many will know starred as Pat Butcher in Eastenders culminating in a brilliant dying scene which touched millions of viewers.
If you haven’t yet watched SAY THEIR NAME you can view it here – SAY THEIR NAME
As we have noted before, we believe the video to be the only one of its kind in this country – made by and for bereaved parents, it gives comfort to the newly bereaved and understanding to their friends and family.
How do you spell blogosphere? Â We’ve not really been there before but now that a number of blogs have been spreading news about BEYOND GOODBYE, I guess its time we took a look.
First off, this lovely woman from across the border in Scotland added an item about the film on her site – see it hereÂ final fling. Â Final Fling is a great site started by one Barbara Chalmers who has dashing white hair and wears bright red lipstick. Â Â From what I can gather she’s an artist, a life coach, an independent celebrant and plays in a samba band. How she finds time to put this site together is beyond belief but its full of masses of information about what to do to prepare for a good death and a good funeral. Â Â Nice site Barbara – and thanks for spreading the word about our film.
You’ll also find Beyond Goodbye on the front page of the Natural Death Centre’s website . Here they’ve used it as an example of what is a good funeral. The Natural Death Centre is the main resource in this country for independent funeral advice. Â They see their role as “playing a central part in demystifying the traditional funeral, encouraging thousands of families in having the kind of funerals they wanted, and helping create opportunity for new rituals to emerge.”
Earlier in the year the film had been featured on Seven Ponds, a website on the west coast of USA – see here for some of the comments. Â Â Seven Ponds also blogged about Rosa’s show In Absentia. Â Â Â Suzette Sherman, founder of Seven Ponds says in her introduction, “We see a world where everyone can experience death in their own personal way and feel it’s all okay”. Â Â Everyone’s death is unique and everyone will experience grief differently. Â Seven Ponds is a fantastic resource for helping people to embrace end of life with real love and compassion. Â As well as being environmental friendly, with advice about planning a home funeralÂ (home births why not home funerals?)Â the site also has masses of examples of the ways people have responded to death and dying in art and creativity.
Dying Matters is part of the National Council for Palliative Care with a missionÂ â€œto support changing knowledge, attitudes and behaviours towards death, dying and bereavement, and through this to make â€˜living and dying wellâ€™ the norm”. Â Â Â Its actually a coalition of various organisations across the NHS, voluntary health and care sectors, trade unions, the funeral industry and more. Â Â Â It’s website recently featured our contribution to their Day of the Dead conference. Â We had showed our film at the event and Â Jane’s had spoken about bereaved parents being peoples worst nightmare. Â Â The article Turning grief into positive action quotes herÂ â€œour aim is to share our grief in a positive way, both for people who know us and those who don’t. We hope that in our death-averse culture, by bringing our experience into the public domain it will encourage others to open up more about an area so shrouded in silence….Â Our aim was, and still is, to celebrate Josh’s life as well as mourn his death.â€
The one thing in common with all these links is the wish for people to have meaningful and life affirming experiences of death, dying and bereavement. Â Â And the best way to do that is to talk, Â to shareÂ feelings, and be a support for one another. Â Â What’s amazing is that through the internet, it’s now possible to find a sense of universal understanding and compassion from people we may most likely never meet. Â Â Â Â We are glad that, from our own tragedy, others have found some comfort (and perhaps example) from the things we’ve done for Josh.
Itâ€™s held every year on the 1st November and is one of Mexicoâ€™s more well-known public holidays.Images of brightly coloured masks, skulls and skeletons dancing to street music in riotous celebration are what come to mind.
Somewhere between Hallowean and Thanksgiving, its an opportunity for families to remember their dead, both personal and well known public figures.
Last week, Jane and I attended The Dying Matters annual Day of the Dead conference in London.
Iâ€™ve just downed tools at the end of a long edit for a BBC 2 series covering a year in the life of Claridges, an exclusive hotel in the heart of London.Â Â Â Â Weâ€™ve missed a number of deadlines but 12 o clock on Thursday 1st November is absolutely solid one â€“ no more extensions â€“ thatâ€™s it ..Â finito!Â Â But its now 12.30 and weâ€™re late.Â Jane and IÂ are hurrying round the corner of the British Museum looking for the venue of the Dying Matters conference held to coincide with Mexicoâ€™s famous day.Â Â Â Weâ€™ve been invited to screen the film of Joshâ€™s funeral but Iâ€™m still not sure exactly what kind of occasion this is.Â Â These days I find that it really doesnâ€™t matter that I have no idea what we might be getting into â€“ should I be nervous about speaking in front of a huge audience, are they professionals, charity workers, or bereaved parents like us.Â It seems Joshâ€™s death has given me the wherewithal not to care about these things.
We arrive in a large room with a low false ceiling still relatively empty â€“ strip lights, three large screens along one wall and around a dozenÂ round tables decorated with homemade sculptures modeled on those familiar images of hollowed eye sockets and gaping jaw lines â€“ there are bowls of sweets and plates of biscuits with similar blood dripping themes.Â
In one corner we find the table reserved for speakers.Â Â Â Jane will easily fall into conversation with her neighbour;Â I enjoy a moment of my own silence among the gathering audience, now numbering close to a hundred. Â It feels comfortable to be here. Â Thereâ€™s a growing buzz of chatter which I am not part of, but then I have always liked that moment when as a child I would drift offÂ into my own reverieÂ secure in theÂ knowledge that the world was carrying on around me.
Itâ€™s a packed programme of speakers and presentations, power points and sincere deliveries â€“ but the messages pass me by. Â Â Something about volunteers to hold the hands of the dying, pathways to a good death, the launch of a form for funeral wishes, a film called â€œI didnâ€™t want thatâ€ which I didnâ€™t quite get. Â Â Then Jane and I are standing by the podium, a little apprehensive now aboutÂ introducing something of a more personal significance.
‘Beyond Goodbye’ has been seen by quite few people â€“ maybe hundreds, perhaps a thousand or so â€“ not exactly a blockbuster but gratifyingly, it does have an audience. Â Itâ€™s been on this site and on Vimeo for nearly a year now, and weâ€™ve had a load of feedback as to how moving and comforting the film is.Â Â But this has been from people we either know well, orÂ who are complete strangers.Â Â In both these cases people have made a conscious choice to view the film. Â Â Now as I stand here, it somehow feels like we are about to inflict our story and our grief on an audience who canâ€™tÂ escape. Â Â And I canâ€™t escape my doubt â€¦Â of what value is this film to people who never knew Josh. Â These were professionalÂ funeral directors, academics and educationalists, casino online social and care workers, concerned surely with changing policy and attitudes towards death and dying. Â Why should they want to identify with our grief amongst all others in their lives or the world in general.
Then there were those nagging thoughts of what Josh himself would have made of this.Â Â Â Â Â All those photos of him on the screens â€“ 3 times over â€“ his coffin, his parachute jump, his aliveness and his deadness. Â Â Could he, would he, be happy with this spectacle? Â Â In the dark, Iâ€™m not so much looking at a film, as reliving the past two years. Â I can feel the trickle of a tear on my cheek.Â Â I brush it away along with thoughts that in exposing him to the world, of exposing his death to all and sundry, we are doing him a disservice. Â Is there in all this, something shameful about dying? Â Something so wrong, culpable, especially at such a young age. Â And do we as Joshâ€™s grieving family carry that shame. Â Is that what Iâ€™m feeling now?
I do NOT want the lights to come back on.Â Â Â Â Â But they do, in a muted silence followed by a gentle gathering of applause.Â Â As I stare fixedly at a paint crack on the wall, I imagine all eyes are on us.Â Â Â Â Another of the speakers on our table hands me a note â€“ â€œIâ€™m glad Iâ€™m not on nextâ€. Â Â The audience has been moved. Â Â They have got to know Josh, and us, and his friends and they have found us real. Â Â That if anything is the power of showing our film to a live audience, (as opposed to a remote, on line, disconnected viewer) – it makes our lives more real, more accepting of our reality without Josh.
When the note giver does speak she introduces herself as Dr Kate Granger,Â an Elderly Medicine Registrar and the author of two books – The Other Side and The Bright Side.Â Â Â Â She then tells us that 14 months ago she was diagnosed with a rare and aggressive sarcoma which will end her life before too long.Â Â Â Now that she is both patient and doctor, Granger explains that she wants to help health care workers to better understand what being a patient is really like, and how a doctorâ€™s behaviour, no matter how small or seemingly insignificant, can impact massively on the people they look after.Â Â Â Â Her books recount her personal battle with control, how and when to relinquish it, but Granger herself was an inspiration with her total openness about dying and what it means to her.
I must have learnt something about openness when it comes to death as my question to her, â€˜how long have you got?â€™ comes quite easily.Â Â Â Â Â The answer was in effect â€“ anytime soon â€“ the average life expectancy of people with this diagnosis is 14 months.Â Â Â Most would put Grangerâ€™s composure in the face of such tragic circumstance, as manifest of an extraordinary well of individual courage and positive thinking.Â Â Â Â But its also true, and as she remarked, itâ€™s those family and friends close to her that are more distressed than she.Â Â Â Â I can understand this.Â Â Â Â The perceived nightmare is far worse than the actual nightmare. Â Â Â Â If the doctors she wants to enlightened are death denying (possibly seeing a patients death as their own personal failure), we too know about a grief denying complex that seems to affect so many of our own acquaintances.
Dying Matters exists because of these denials. Â â€œLetâ€™s talk about itâ€ the website almost screams. Â Â But it feels we have a long way to go before we can have our own â€œDay of the Deadâ€ here in Britain.Â Â Â Â If we donâ€™t go to next years event with Dying Matters, perhaps youâ€™d like to join us for an evening of margueritas, encilladas, and possibly a sombero laden guitarist crooning â€˜guantanameraâ€ here in Chalford Hill.
8 Nov 2012
Dying Matters have now put Beyond Goodbye on their front page along with a nice article about Jane’s contribution – check it out here. Â Â They’ve called it ‘Turning Grief into Positive Action’
Part of me still can’t believe that I’m writing this but our film of Josh’s funeral has found some new audiences. Â Â In the coming months we have been invited to show ‘BEYOND GOODBYE’ at The Compassionate Friends Annual gathering (that’s on 8th September) and at the Dying Matters “Day of the Dead” event in November. Â Â Â The Compassionate Friends is a support network for bereaved parents and siblings andÂ Dying Matters is a coalition of all sorts of people connected with end of life care. Â Â Â Each screening will be followed by a discussion.
Are we nervous? Â Yes. Â Are we pleased? Â Â Kind of. Â Does it matter? Â Guess so. Â Â But two years ago who could have thought that we would be showing a film about our son’s funeral to audiences like this. Â I am sure we will be received with kindness but my stomach sinks when time and again I have to rethink that terrible day we heard the news that Josh had been killed. Â Â Â For many a journey through grief is essentially a private matter but from the moment Josh died we have needed to reach out to friends and family for support. Â Â Documenting his funeral for what many have found a very moving film, was part of this process. Â Josh’s sister Rosa remarked “Josh wasn’t just ours”. Â Â How right she was and we have found real solace in getting to know so many of Josh’s friends both from his life in Gloucestershire as well as in London.
But to take this openness to another level that includes a wider public provokes some pretty weird feelings. Â Â Yes, it is gratifying to be asked to show our film but the idea of sharing our grief on such a public stage is a complex one. On the one hand we Â want to share Josh and to share the burden of our grief.Â Â But part of me also wants to keep my relationship with him private lest my memories and all my thoughts about him now become somehow adulterated. Â Â Both Jane (Josh’s mum) and I also have a nagging doubt that going public is a kind of diversion from grief proper (whatever that is), or at least a distraction from the pain of our loss. I know that when we attend these events, many will admire the strength and courage we show, but obviously that’s a bit of a mask, and the actual chaos of our mourning lives will be carefully hidden (or at least held in check) by the civilised practicalities of putting on a good show.
But we have been changed by Josh’s death. Â For good or for bad we are who we are now and I’m glad we have been able to open up like this because the rewards have been many.
Now comes the news that we have also been nominated for the Good Funeral Guide annual awards (a kind of Baftas for the death industry) to be held in Bournemouth later this month. Â Â Â This is for the “Most Significant Contribution to the Understanding of Death in the Media” …. Â that might sit nicely alongside my real Bafta, but oh, how I wish our skills had not been called upon in this way.
I’m afraid the Compassionate Friends event is for members only Â but if you’d like to attend any of the others here are the details –
The Dying Matters – CELEBRATING THE DAY OF THE DAY – event is on 1st November at Â Senate House, Malet Street, London WC1 7HU (near Euston Station). Â Â Â The full programme is not published yet Â but you can keep up to speed by visiting their website hereÂ DYING MATTERS .