THE GOOD GRIEF PROJECT has now entered a new phase. As you will know Jane and I travelled to the USA and Mexico last year in order to meet with and film other bereaved parents as part of an on going project to collect and publish stories of how people grieve for a child. Seven of these stories now form the substance of our rough cut for a 90 minute documentary which we are hoping to release this coming September along with brand new websites, both for Good Grief and Beyond Goodbye.
And to help promote the project and to keep you all in the loop we have recently completed a short 6 minute trail for the documentary – check it out above. We hope you like it; we hope you are energised by it and we hope you are as excited about it as we are. This is our calling card for THE GOOD GRIEF PROJECT and our biggest hope is that it will help us to generate much more publicity and … more funding.
Do you know what ‘Kvetching’ is? No, nor did I till I found it referred to in article written by Susan Silk a clinical psychologist and Barry Goldman a family mediator. “Kvetching” is an old Yiddish phrase meaning to moan, grumble or complain continuously about something. Silk and Goldman have used the idea to explain how not to say the wrong thing to anyone who has been traumatised by those who are close to them.
The concept is simple – those who have been traumatised can kvetch all they like to who ever they like. Those around them can comfort and be there for them but hold their tongue on any kind of kvetching – unless it’s to some one who is further away from the trauma.
Agreed this is not a very nice way to describe someone who like us is grieving but I think you get the point and I have adapted what they have called the ‘ring theory of kvetching’ to our situation – many bereaved parents and siblings will have had experience of friends and family unwittingly and totally ballsing up by talking about their own experience of grief in the mistaken belief that that will somehow comfort us. I know that soon after Josh died a distant relative needed to tell me how horrified and upset he had been after a cousin had been murdered some twenty years ago. He meant well but I was left wondering what the hell I was supposed to do with this information. Was I supposed to comfort him, empathise with him, put my arms around him, when every bone and fibre of my body was still reeling from the death my son. Where was I going to get the energy to respond to this story sympathetically or even angrily? I said nothing but the subsequent silence between us and the simmering hurt and resentment lasted for a long time. I know my relative meant well but had fallen prey to a common misconception about the needs of the recently bereaved.
Silk and Goldman came up with a simple technique to help people avoid this mistake. The above diagram describes our relationship to others should we find ourselves in the unenviable position of suffering the death of a son or daughter – always a hugely traumatic event. Their advice though is directed towards the social circles around us. Ands what they suggest for friends and relatives of the bereaved is this ..
Draw a circle. In it, put the name of the person at the center of the current trauma. In our case that would be Jane and myself. Now draw a larger circle around the first one. In that ring put the name of the person or persons next closest to the trauma (i.e Josh’s brother and sister Joe and Rosa). Repeat the process as many times as you need to. In each larger ring put the next closest people. Parents and children before more distant relatives. Intimate friends in smaller rings, less intimate friends in larger ones. When you are done you have a Kvetching Order.
And here are the rules.
The person in the center ring can say anything she wants to anyone, anywhere. She can kvetch and complain and whine and moan and curse the heavens and say, “Life is unfair” and “Why me?”and tell everyone to “piss off” (even if they don’t really mean it) That’s the one payoff for being in the center ring.
Everyone else can say those things too, but only to people in larger rings.
When you are talking to a person in a ring smaller than yours, someone closer to the center of the trauma, the goal is to help. Listening is often more helpful than talking. But if you’re going to open your mouth, ask yourself if what you are about to say is likely to provide comfort and support. If it isn’t, don’t say it. Don’t, for example, give advice. People who are suffering from trauma don’t need advice. They need comfort and support. So say, “I’m sorry” or “This must really be hard for you” or “Can I bring you a pot roast?” Don’t say, “You should hear what happened to me” or “Here’s what I would do if I were you.” And never ever say anything that begins with “at least … “. “At least they had a good life…”, “At least you have other children….”, “At least s/he isn’t in pain anymore …”
And if you want to scream or cry or complain, if you want to tell someone how shocked you are or how icky you feel, or whine about how it reminds you of all the terrible things that have happened to you lately, that’s fine. It’s a perfectly normal response. Just do it to someone in a bigger ring, someone who is further away from the trauma than you are.
So its COMFORT IN and DUMP OUT!
Complaining or whinging to someone in a smaller ring than yours doesn’t do either of you any good. On the other hand, once you’ve comforted a traumatise person you may well find the need yourself for some TLC, so go to someone in the ring outside yours. And don’t worry. You’ll get your turn in the center ring. You can count on that.
Ride London is an annual event attracting over 25,000 cyclists riding 100 miles through London out to Surrey (climbing two famously nasty hills) and back again to finish on The Mall.
… and we have taken up the challenge to ride with them
WE are TEAM JOSH and we have entered this year as part of our fundraising campaign for THE COMPASSIONATE FRIENDS. We are hoping to collect £1500 in donations in support of the hugely valuable work that TCF does. TCF helped us – they have been helping us ever since Josh died and we want to give something back in return. And if you want to help us help them then please trek on over to our JUSTGIVING page where you will find the easy peasy way to donate.
Just a little background re TCF
Over 6000 young people under the age of 25 will die in the UK very year leaving tens of thousands newly bereaved parents, siblings and grandparents. (When Josh died in 2011 we were some of that number). TCF is an international charity that started life in Coventry in the late 1970’s and is the only peer to peer network of bereaved parents and families in existence. All the charities staff, management board and volunteers are themselves bereaved. As such they/we are especially attuned to the needs of the newly bereaved.
But resources are limited and the charity we can’t reach many of the people who so desperatety need our help without developing its profile along with all the publicity it can get. And this is where our Ride London comes in and how you can help us in what is bound to be a hugely publicised event. But remember we are only human and it is 100 miles and legs do tire … moral support for us is invaluable and financial support for TCF is … priceless. If we can do you can do it by DONATING HERE.
So who is TEAM JOSH –
With a total age of over 200 (thats two years for every mile we ride – yikes!) we are all family and friends of our Josh
Jimmy (66) is Josh’s Dad and still riding hard and the most ‘senior’ of the team.
Although this picture could tell a story it’s not really true one. We did make it to New York last year but sadly without the bike and John o’Groats will have to wait awhile – 874 miles feels a tad over the limit. I’ve never even riden 100 miles in one go and this is my first attempt at Ride London 100 – something of a challenge.
But I’m totally committed – I’ve riden the pain of Josh’s death so frankly these days I can ride anything!!
JOE (37) is Josh’s older brother. He is our team leader, team coach and general alround inspiration.
As you can see Joe has done this before so at least one of us knows the way!! Joe is looking for a fast time this year – trying to crack 5 hours – but the rest of us hope to ride with him for at least some of the time… maybe the first 100 yards.
Joe is currently in Mexico preparing for a Triathlon on 21st May – we wish him luck
Tom (37) has the biggest heart and the biggest smile in North London. Originally from sarf of the city Tom knew Josh from a baby, has and will always have deep connections with our family. We’ve riden and hiked and overcome many obstacles together.
I’m relying on Tom to help me get up them hills.
Billy(Andrew)(Wiggo)Baxter (3?) is our secret surprise. An unknown quantity is Billy but make no mistake he has some very powerful legs.
We are hoping he can keep his eye on the road and not be distracted by thoughts of a new arrival to his family – due sometime in late June.
Good Luck Billy and Bel on all accounts.
Ride London happens on Sunday 31st July and the countdown has now begun – we train in earnest and put in the miles every week and especially the weekends – in total I expect to cover over 100o miles between now and then. And while this is enjoyable its no laughing matter – our legs need to work hard but fundraising for our charity can also be a gruelling task. How many times have you been asked to donate to a good cause this year? We do understand that pockets are not a bottomless unending pile of cash, but we also ask that in honour of all those children who have died before their parents and in honour of the help that TCF offers them, that you can spare a little to support this amazing charity.
On Thursday last week our friend Julian Usborne was buried on his farm near our home in Chalford, Gloucestershire. I took this photo as the funeral procession wound its way up the hill, a short walk from the Usborne family home where Julian had died a few days earlier.
Julian was a remarkable man and we were proud to call him a friend though in truth we had really only got to know him and his wife Hege in the years following Josh’s death. Hege is Julian’s third wife and her son Tom was (is) a good friend of Josh and it is through this connection that Julian gave us permission to plant a tree in memory of Josh on the hill overlooking the farm. Followers of our story might be able to work out that Josh’s tree is about 50 yards to the right of where this picture was taken.
We had visited Julian and Hege a couple of weekends before Julian died and it was on one of the visits that while they were both discussing his funeral arrangements that Julian had quietly proffered a request. ‘Do you think there’s room’, he asked casually, ‘and would you mind if I go up there on the hill next to your tree?’ Well I’m not going to forget that moment in a hurry. Number one, it was Julians generosity in the first place that has allowed us to have such a memorable spot to remember and keep Josh in our lives – so how come it’s him asking us if it’s OK? But the idea that Josh’s special place would soon be joined by another was exceptionally heart stopping and exceptionally heart warming.
But to back track a little – Julian had know for some months that he was soon to die. Having been diagnosed with cancer over a year ago, his and his family’s story has been one of a gradual if grudging acceptance of the inevitable. That his death should come slightly earlier than initially predicted was a painful if a somewhat minor detail to a journey that we were all invited to join. In conversation Julian would often remark “Well I’m dying you know … or “If this is dying, it’s OK by me” Hege had started a Facebook page “Julian’s journey” on which they and others could share thoughts and ideas (but mostly loving stuff!) as his cancer progressed – an early entry reads
“Probably had cancer now for a year. I have had not the slightest pain in all that time except for the after-math of surgery. Chemo was a doddle; it did make me tired and thirsty. What is wrong with me? Why can’t I suffer a bit more like others do? I guess its the gin and tonic (thought to have cancer relieving properties?)”
As I said we didn’t know Julian that well before Josh died. Both he and Hege had attended monthly get togethers of a group of concerned parents who would share worries about the behaviours of their teenage sons (Josh and Tom included) – activities we had all engaged in ourselves and were now in a slightly awkward position of having to monitor with our ‘wayward’ children. I say Julian attended but most often had fallen asleep before the first bottle of wine had been emptied. This was probably a totally appropriate response to our anxiety driven conversations but at the time I thought of Julian as a rather aloof, not to say grumpy old man. Luckily we discovered this to be far from the truth – as the many testimonies to the man aired at this funeral would reveal – Julian was a true non conformist whose mission in life was to make mischief wherever he could but with a concern for the environment in which he lived and was always happy to share with whoever. And this of course (or perhaps not) extended to his dying wishes.
Julian shared his death as he did his life – with humour and gratitude as well as a desire to shock. Whether or not this last was part of his and Hege’s deliberations for the funeral arrangements, I know not. At this stage in his journey I suspect most who knew him were passed being shocked. What transpired on the day of his funeral was extraordinary only in its very ordinariness. It was quite ordinary for Julian to want to be buried on his own land. It was and is quite ordinary for Hege to want to wake in the morning, look out her window and see her husbands grave nodding back to her from the not so distant hillside. It was quite ordinary for the Usborne women to gather and sew his ‘rainbow’ jumpers together to make his shroud. It was quite ordinary for the rain to fall as the Usborne men carried him to his grave. And it was more than ordinary (in fact quite common place) for the Westley Farm kitchen to be over flowing with bring and share dishes, muddy boots and impromptu musical offerings.
In the years since Josh died, we have had death in our lives in ways we could not have predicted. Death is part of us, not that it isn’t present for everyone, just that perhaps we notice it more. We need to – as a way to trying to understand what still remains incomprehensible – but the result has been the discovery that to be open to, and to be open about death, mortality and what that means for those left behind is good for the soul. There are to be true certain occasions that I still find disconcerting, the death café movement for example, or an overemphasis on things spiritual, but in general I now find to talk of death is to make friends with death and that conservation can be as private or as public as I like.
In the end it was Josh who gave me the first lesson. As I wrote at the time of his death “have you taught me how to die?”. Organising his funeral and that of my mothers just a short while ago showed us how important it is to take charge of our ‘final farewells’. Without these moments I’m not sure I would have been so comfortable sitting in Julian’s front room chatting so freely about his death, I don’t think I would have been so unafraid of any misgivings he and Hege might have, nor would I now be so secure in my own mortality.
Last Thursday Julian was laid to his rest just as he wanted. For me, that his funeral was a tad unconventional is not the issue. His final journey accurately reflected the man and honoured the memories for all those who took part. Would that we could all say goodbye in such fashion. Yes funerals are for the living but there was no better way of ensuring Julian’s presence both on the day and our recollections of the day. Later in the evening after short debate, a fire was lit on the mound that was Julian’s grave – warmth for the cold, cold ground. It was still smouldering when we went to visit him and Josh the next morning.
Christmas is coming and we’d like to extend our warmest seasonal greetings to one and all ….
Along with many families who will have an empty space at their festive table, we will be setting a place for Josh, lighting a candle for him, drinking a toast and remembering happier times. Our last Christmas with Josh was in 2009 – we spent the season in New York – a great holiday with much to discover. Josh, with a free pass from his work at the Ministry of Sound had got access to a club for New Years Eve and the following day with his brother Joe, took a dip into the just above freezing Atlantic as part of the Coney Island New Years Day Swim. And he will never be forgiven for the stress caused when he wandered off in search of a sandwich just as we were about to board the plane back home – with the rest of us left stranded at the gate he eventually strolled up munching nonchalantly with just seconds to go before it closed. Memories that last the longest are probably those with the strongest emotional charge, even if they are tinged with certain frustration at a teenagers self absorption. A frustration now of course loaded with regret that there are now no more new Josh stories to be told.
For us Christmas is less, far less about any religious observance, more about an opportunity for the family to come together, all under one roof and to assert of love for one another – to celebrate and to strengthen our bond with one another. That we do this simultaneously with families up and down the country is also important, cementing us within a cultural framework and providing an emotional security as part of our ‘belonging’. So, as for many bereaved families, Josh’s forever absence is particularly painful, especially if that sense of belonging is disrupted not just by the trauma of death but by the isolation we often feel from a society that finds death or deathly memories a tad annoying when everyone is just trying to get on and enjoy themselves.
Jane spoke about this in the radio interviews she did on the day Dying Matters launched their BEING THERE campaign (see this post). She was asked to try and discribe what it felt like to be bereaved of a child in the run up to Christmas. Having lost both parents in the last two years, she tried to compare timely and untimely deaths – “when your parents die you lose your past”, she said, “when your child dies you lose their future”, a distinction possibly not well recognised by family and friends as they shell out seasonal greetings. While it is true that our own Christmas card count has decreased rapidly over the last few years (we don’t send and therefore don’t receive that many), of those we have received so far, only a few have mentioned Josh. We believe there is nothing ill intentioned about this, merely that people are somehow fearful that to talk about Josh is to cause extra pain at a time when we should be celebrating. This is of course a fear totally misplaced and probably speaks more to the senders fear about death and mortality than it does to their concern for our happiness. Click on the link below to listen to Jane on BBC Radio 5 Live
Christmas cards are probably one of our biggest bones of contention. We struggle with the cards who edit Josh out especially from those who knew him. What we say now is please do not be scared that you might make us upset. Every parent who has lost a child will be thinking about them and longing for them at Christmas and we are desperate that they should be acknowledged. There is a saying; “Your words may bring tears to our eyes but they are music to our ears.” And as the title of The Compassionate Friends’ short film emphasizes it is important to SAY THEIR NAME.
Listen here to more of Jane’s interviews across the nation
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 and 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. 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 mind they see as uncomfortable, 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. 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. The Coalition’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, will involve a fundamental change in society in which dying, death and bereavement will be seen and accepted as the natural part of everybody’s life cycle.
Josh’s mum Jane is on their advisory committee and contributed to the launch of BEING THERE with a number of radio interviews across the UK including BBC Radio 5 LIve, Radio Scotland, Gloucestershire and London and the West Midlands . This is what she had to say about her conversations around Josh… “We discovered that whenever we talked about our son Josh to friends and family there were awkward silences and people just didn’t know what to say or do for the best or even avoided us altogether. The first Christmas after Josh’s death was particularly upsetting, especially when we received Christmas cards that didn’t even acknowledge his death. However, talking about our loss, remembering Josh’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.”
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: Coping with Christmas
Annie Broadbent is the author of new book ‘We Need to Talk About Grief’, which gives first-hand advice on supporting someone who is grieving: visit Annie’s website
Kate Ibbeson has written a blog about feeling unsupported at Christmas following the deaths of her parents: Read Kate’s blog
Cruse Bereavement Care offers a helpline for bereaved people all year round, including throughout the festive season: Cruse Bereavement Care
Silverline provides information, friendship and advice to older people who may feel alone; the free helpline is open throughout Christmas: Silverline
Every now and again, we see or read things on the internet that express things we’d like to say, but so much better. Such is this piece. It’s by Megan Devine, a mental health therapist who’s partner died five years ago. So if you’ve ever been flummoxed by how to deal with someone’s grief, caught short on what to say to them, or are just unsure of how to “be'” with them, then here’s a few tips. I hope it doesn’t sound to trite, but if we ourselves had had some grounding in these ideas in the months (and now years) since Josh died, then maybe we too would have had more compassion for those around us who wanted to help but didn’t know how. (Jimmy September 2014)
I’ve been a therapist for more than 10 years. I worked in social services for the decade before that. I knew grief. I knew how to handle it in myself, and how to attend to it in others. When my partner drowned on a sunny day in 2009, I learned there was a lot more to grief than I’d known.
Many people truly want to help a friend or family member who is experiencing a severe loss. Words often fail us at times like these, leaving us stammering for the right thing to say. Some people are so afraid to say or do the wrong thing, they choose to do nothing at all. Doing nothing at all is certainly an option, but it’s not often a good one.
While there is no one perfect way to respond or to support someone you care about, here are some good ground rules.
#1 Grief belongs to the griever.
You have a supporting role, not the central role, in your friend’s grief. This may seem like a strange thing to say. So many of the suggestions, advice and “help” given to the griever tells them they should be doing this differently, or feeling differently than they do. Grief is a very personal experience, and belongs entirely to the person experiencing it. You may believe you would do things differently if it had happened to you. We hope you do not get the chance to find out. This grief belongs to your friend: follow his or her lead.
#2 Stay present and state the truth.
It’s tempting to make statements about the past or the future when your friend’s present life holds so much pain. You cannot know what the future will be, for yourself or your friend — it may or may not be better “later.” That your friend’s life was good in the past is not a fair trade for the pain of now. Stay present with your friend, even when the present is full of pain.
It’s also tempting to make generalized statements about the situation in an attempt to soothe your friend. You cannot know that your friend’s loved one “finished their work here,” or that they are in a “better place.” These future-based, omniscient, generalized platitudes aren’t helpful. Stick with the truth: this hurts. I love you. I’m here.
#3 Do not try to fix the unfixable.
Your friend’s loss cannot be fixed or repaired or solved. The pain itself cannot be made better. Please see #2. Do not say anything that tries to fix the unfixable, and you will do just fine. It is an unfathomable relief to have a friend who does not try to take the pain away.
#4 Be willing to witness searing, unbearable pain.
To do #4 while also practicing #3 is very, very hard.
#5 This is not about you.
Being with someone in pain is not easy. You will have things come up — stresses, questions, anger, fear, guilt. Your feelings will likely be hurt. You may feel ignored and unappreciated. Your friend cannot show up for their part of the relationship very well. Please don’t take it personally, and please don’t take it out on them. Please find your own people to lean on at this time — it’s important that you be supported while you support your friend. When in doubt, refer to #1.
#6 Anticipate, don’t ask.
Do not say “Call me if you need anything,” because your friend will not call. Not because they do not need, but because identifying a need, figuring out who might fill that need, and then making a phone call to ask is light years beyond their energy levels, capacity or interest. Instead, make concrete offers: “I will be there at 4 p.m. on Thursday to bring your recycling to the curb,” or “I will stop by each morning on my way to work and give the dog a quick walk.” Be reliable.
#7 Do the recurring things.
The actual, heavy, real work of grieving is not something you can do (see #1), but you can lessen the burden of “normal” life requirements for your friend. Are there recurring tasks or chores that you might do? Things like walking the dog, refilling prescriptions, shoveling snow and bringing in the mail are all good choices. Support your friend in small, ordinary ways — these things are tangible evidence of love.
Please try not to do anything that is irreversible — like doing laundry or cleaning up the house — unless you check with your friend first. That empty soda bottle beside the couch may look like trash, but may have been left there by their husband just the other day. The dirty laundry may be the last thing that smells like her. Do you see where I’m going here? Tiny little normal things become precious. Ask first.
#8 Tackle projects together.
Depending on the circumstance, there may be difficult tasks that need tending — things like casket shopping, mortuary visits, the packing and sorting of rooms or houses. Offer your assistance and follow through with your offers. Follow your friend’s lead in these tasks. Your presence alongside them is powerful and important; words are often unnecessary. Remember #4: bear witness and be there.
#9 Run interference.
To the new griever, the influx of people who want to show their support can be seriously overwhelming. What is an intensely personal and private time can begin to feel like living in a fish bowl. There might be ways you can shield and shelter your friend by setting yourself up as the designated point person — the one who relays information to the outside world, or organizes well-wishers. Gatekeepers are really helpful.
#10 Educate and advocate.
You may find that other friends, family members and casual acquaintances ask for information about your friend. You can, in this capacity, be a great educator, albeit subtly. You can normalize grief with responses like,”She has better moments and worse moments and will for quite some time. An intense loss changes every detail of your life.” If someone asks you about your friend a little further down the road, you might say things like, “Grief never really stops. It is something you carry with you in different ways.”
Above all, show your love. Show up. Say something. Do something. Be willing to stand beside the gaping hole that has opened in your friend’s life, without flinching or turning away. Be willing to not have any answers. Listen. Be there. Be present. Be a friend. Be love. Love is the thing that lasts.
On Tuesday 5th August 2014 the Harris clan gathered for the funeral of Josh’s grandmother Pat Harris. This was the third family funeral in as many years and we were quite apprehensive about yet another cremation and the possible return of previous painful memories. As she bore her mother’s coffin into the crematorium Jane was conscious of her now ‘orphan’ status and what this might mean both as a daughter and a mother. In a sense we have been caught in the middle of different generational deaths – while we have a good enough word – ‘orphan’ – for a child without parents, we are yet to discover what we should call a parent whose child has died. And while the feelings and the sadness and the pain are so very different we both felt it important we should somehow equate them and make Josh too part of this ceremony for his grandmother. We have a lovely photo of Josh (aged 3) on holiday with Pat and Gerry – sadly one of only a few of the three of them – which we included on the order of service and Josh was mentioned a number of times throughout the day. To be honest this is not easy, we do not want to ‘dilute’ that sense of honour and respect we have for Pat, but at the same time her death and her funeral (as did Gerry’s) wouldn’t seem nearly as significant without Josh being there too. After all he was their grandson and theirs to mourn as we mourn them.
In the end this blending of memories seem to work even though many of Pat’s friends had never met Josh. Compared to the way we said ‘goodbye’ to Josh, both Pat’s and Gerry’s funerals were more mute affairs though we carried forward the idea of inviting people to write messages on ribbons which could be tied to a flower and laid on the coffin as a central ‘doing’ act to the ritual. Although there are strong Jewish roots to the family, our funerals are non religious and perhaps a bit ‘modern’ provoking one elderly relative afterwards to remark “what kind of funeral was that?” Our wonderful celebrant Ian Stirling was quick to respond – “that was a Pat Harris kind of funeral.”
Funerals are of course for the living – and for what we take away from them as much as the memories we bring. We were all very moved by the poem that Jane read at the service and reproduced below. We know now that grief is hard work, maybe not so much for the death of a parent or a grandparent as it is for your child; but work nevertheless. And in that work, and in that experience of grief, inevitably we learn new things, new ways of looking at life. That is the gift our loved ones leave us.
“Comes The Dawn” by Veronica A. Shoffstall
After a while you learn the subtle difference
Between holding a hand and chaining a soul,
And you learn that love doesn’t mean leaning
And company doesn’t mean security,
And you begin to learn that kisses aren’t contracts
And presents aren’t promises,
And you begin to accept your defeats
With your head up and your eyes open
With the grace of a woman, not the grief of a child,
And you learn to build all your roads on today,
Because tomorrow’s ground is too uncertain for plans,
And futures have a way of falling down in mid-flight.
After a while you learn
That even sunshine burns if you get too much.
So you plant your own garden and decorate your own soul,
Instead of waiting for someone to bring you flowers.
And you learn that you really can endure…
That you really are strong,
And you really do have worth.
And you learn and learn…
With every goodbye you learn.
This is one of the last photos we took of Pat, just two months before she died. We had recently collected Gerry’s ashes from the undertakers (this was over a year since he died – why it took so long is anybody’s guess) and Pat had asked that they be scattered around a particular tree in the old family home near the golf courses in Troon. The tree had been given to them as a wedding present in 1951 and was one of many that Gerry planted subsequently in the many years they lived there. But the house now has new owners and we needed to get their permission. We had planned to do this on our next visit but life and death intervened.
It was the day following Pat’s funeral then, that we met again for another special ritual. Jane had asked the present occupiers of the house who kindly obliged – and with considerable grace as their afternoon was about to be disturbed by eight adults and two children, none of whom were dressed in the manner customarily required for the dignified disposal of a family patriarch. Neither of us can remember being so involved in the funerals of our grandparents. In fact we were positively discouraged from even attending. In those days it wasn’t seen at all appropriate that young children should be present on such occasions – something to do with protecting their innocence, shielding them from sadness, from raw feelings. Yet here we were half a century later, on a bright summer’s day wandering around somebody else’s garden, carrying a box of human remains and with kids in tow!
‘With every goodbye you learn …’ And that learning can and maybe should start at any age, best done in the act of doing, of actual participation in ritual. For Pat and Gerry’s great grandchildren, Naomi and Louis, even while they may not recognise the full meaning of this day, hopefully they will remember the weight and the feel of their forebears ashes as no less fearful than the bark on the tree and the dirt in the ground.
Thank you for reading
Jane and Jimmy
For an evocative set of photographs from the day of Granny Pat’s funeral please take a look at this gallery
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.
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)
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.
Come to the launch of Year Two of the Josh Edmonds Memorial Scheme
at The Spotlight, Cirencester College
Monday 9th December 6.30 pm
Honouring the memory of our Josh
Josh was a student at Cirencester College and started his music career on a placement basis with the London based but internationally renowned music venue The Ministry of Sound and within a couple of years had become a video producer for the club. He worked hard had lots of fun and we were so proud of what he achieved in such a short time. Before leaving the club he had made over 200 video clips.
Now nearly 3 years on and MoS are honouring Josh’s memory for the second time with an annual opportunity for 18 to 25-year-olds in Gloucestershire to win a month’s internship with the company. Year Two of the scheme will be launched next Monday 8th December at The Spotlight, Cirencester College. Please join us if you are a student, tutor, head of department, youth leader, musician, or anybody who has an interest in furthering young talent from Gloucestershire – its an opportunity not to be missed.
And of course we already have the experience of an intern to learn from. Last years successful candidate, Lewis Murphy is our guest speaker at the launch at Cirencester College. Lewis will describe to the audience what being the first successful candidate has been like for him.“The people I met and the experiences I had are irreplaceable” he told us “I can now look back at those times and reflect on how much of a career springboard it was by looking at where I am at now.” Lewis, a University of Gloucestershire student until earlier this year, now works for leading drum and bass label, Emcee Recordings. Lewis will be showing some of his own work at the launch along with a few clips from the Josh Edmonds archive.
Young people in Gloucestershire will be invited to apply for this unique and prestigious opportunity in the Video and Music industries. The successful applicant will gain a real insight into the workings of a major music brand, develop their own talent and get the chance to rub shoulders with the big names in popular music.
“Whatever aspect it is that you’re interested in The Josh Edmonds Memorial Scheme is a brilliant way for young talent to gain some experience of the music media industry. So to anyone who is thinking of applying, just go for it, you’d be a fool not to.“
MoS chief executive Lohan Presencer said: “Josh was a fantastically creative and enthusiastic member of the team at MoS. Hopefully this placement will give someone the same opportunities that Josh had and continue his memory.”
So the launch is on Monday evening 9th December at the Spotlight in Cirencester College. (Soft drinks, nibbles and a bit of alcohol will be served) Applications for the scheme are open January through February 2014. The selection process will take place in March 2014 and the successful candidate will be announced in April.