Thank you for listening

Thank you again to everyone who has read, shared and commented on the blog post I wrote detailing my complaint to Wolverhampton's New Cross Hospital about the way both Neil and me were treated days before he died.

I've had phenomenal support since penning this intensely personal story and last week appeared on the BBC News Channel, BBC One O' Clock News, ITV lunchtime and evening, and Sky News, who have kindly provided me with the above clip. I also spoke to BBC Radio Five Live and my audio was shared with various regional BBC radio stations. The Independent wrote an in-depth article and leader column about care for the dying and I've done a very sensitive interview this week with the Wolverhampton Express & Star. I had to turn down approaches from other national news programmes as I just couldn't be in two places at once.

This was because my blog post was picked up after being shared on social media by Joe Levenson from Dying Matters during their 'you only die once' awareness week. A report from the Royal College of Physicians said too many people dying in hospital were not being cared for as well as they could be. This was my opportunity to be heard, and thanks to Joe, I grabbed it with both hands. You can see there's a lot of emotion as I speak, my face is red and I only have to be asked a single question before I launch into recounting our family's turmoil, hardly drawing breath.

As you can imagine, for someone who wrote a blog post wanting just to be listened to, I never suspected I'd end up speaking to millions through national media. It was a cathartic experience for which I'm immensely grateful. Each and every journalist in touch has been hugely respectful.

I have plenty more I want (or need) to say about being bereaved and when I don't have a big pile of work to do, I hope to be back blogging.

Thank you.

'Not a single word of kindness': A letter to a hospital

I was very interested today to hear of a report from Macmillan which reveals cancer patients in the UK aren't treated with the greatest of compassion and are denied "a good death." 

As I approach the second anniversary of losing our beloved Neil, I still carry the trauma of what happened in his last days in Wolverhampton's New Cross Hospital. 

Compassion was sorely lacking. 

I was commissioned to write about this some months ago for a national newspaper as a case study in a bigger piece about NHS failings. That piece never saw the light of day. So here I am getting it out there.  

My husband Neil died in May 2012 of melanoma, six weeks after his 44th birthday.

The hospital concerned has told us they are “deeply sorry” for some aspects of Neil’s care and in response to others, an action plan would be developed. In short, things were to change because of our experience and my complaint. I felt compelled to tell our story as too often now I’m being told it’s typical and I wanted to help prevent similar distress for other families in the future. Today's report from Macmillan tells us what too many people already knew.

Ours is not a headline-grabbing case of massive negligence, rather, to me and my family, a heartbreaking account of how so many basic things can be overlooked.

In writing a complaint letter to the hospital, I wanted to call for better training for staff on general medical wards so that other families are less likely to suffer as we did. To be honest with you I also want to tell this story as it hurts so much and I'm still getting flashbacks. 

I asked management to explain what training staff in general wards underwent to meet the needs of terminally ill patients and urged them to consider investing in increased/improved training.

I received five pages of apology.  

These are points, condensed but also added to a little here, that I raised:

Days before Neil died: 

• Despite being admitted because of dehydration, he was refused a drink of water as we waited in the Emergency Assessment unit. He was given a drip sometime after we arrived (I don't recall how long this was, but certainly more than an hour) only to have it removed to stop porters, who broke into an argument in front of us, refusing to take him for an X ray. They rowed about this between themselves and didn't say or do anything to acknowledge our presence as the subject of their disagreement over whether you could take someone to an X ray with a drip attached. I watched them in silence. It would be up to a doctor whether Neil could have a drink. Every time I asked when the doctor would see Neil I was told: "Not a clue." Five hours later, at around 9pm, we saw one. I clearly remember wondering what the point of being there was and to this day, I have no answer.

• Once he was on the ward, and this is an image that haunts me, Neil lay motionless half way down his bed, his face and clothes smeared with food, while plates piled up still stacked with uneaten meals on his over-bed table. I hated the way the nurses referred to Neil, for example when I  asked why he wasn't eating, I was told: 'He likes his independence too much.' To me, hearing a young man  of such fierce intellect spoken of in such patronising terms, as if he was a wilful elderly patient or child, was hard to bear. I pulled the curtains around his bed to stop other patients staring at him. I wanted him to have privacy and dignity, both of which were evidently lacking. A nurse immediately drew them back.

• We were laughed at when we attempted to report his Kindle missing from his bedside and asked if it could have been stolen. In everything our family has gone through in recent months, the memory of a nurse laughing at me while my husband lay dying is one of the most painful. I couldn’t believe how nurses were interacting with me, with a sort of ‘enforced jollity’ hours after being told my husband was so desperately ill. I started sobbing that I wanted to take him home that minute. I'll let you imagine how we all felt that Neil's Kindle, a thoughtful birthday present from some of our friends, had been taken from his bedside in his last days. Later, as I aired my concerns about Neil's care to a senior member of staff, he admonished me for bringing in valuables. 

• Neil was refused a wash and told he could have a shower in the morning. In the morning he didn't get a shower as nurses didn't have time. Me and one of my 13-year-old daughters spent an hour with Neil who could barely stand, in the ward bathroom, we were in a very distressed state but wanted to do our best for Neil to fulfil a basic need that had been refused. My daughter insisted she wanted to help, I was inconsolable that she would have this troubling episode as a memory so close to losing her dad.

• Later a nurse came and said that they would have given him a wash but they were on changeover. If someone had explained this to me in a professional and caring manner then maybe it wouldn’t have been such a distressing turn of events but they didn’t. Instead I had been dismissed and made to feel unreasonable for requesting the most basic care.

• A nurse in the emergency admissions unit met our repeated questions about what was happening with the answer 'not a clue'. Days later we requested a wheelchair so we could take him out of bed, the response was “Who’s Neil?”

• He fell from his bed and no warnings about his limited mobility or danger of falling were displayed. What do you think I would like to say about that?

• On another visit we were told that nursing staff had been unable to give Neil his prescribed medication as his notes couldn’t be found. As one of those medicines was morphine to control his pain, this was another cause of concern.

• Some days (most I think in this short period, though my memory is blurred) I wasn't allowed to be with him at any other time than in visiting times and should have been advised of flexible times. This hurts so much, I think so often of that lost time with him and how I wasn't there just to hold his hand. I did ask for longer with him, out of normal visiting times but wasn't allowed before his last two days when we were told he would die in the ambulance if he was moved to St Giles Hospice.

• With no staff in view, after giving him a wash, I said goodbye one night to Neil, an elderly man two beds down started shouting at me for help in finding something. I said I was sorry I didn’t work there. He became very angry and shouted at me some more. I was upset there were no nurses to look after someone else who was now berating me for not doing their job – an utterly chaotic and distressing experience.

• When I took up all the above points with a ward manager, I was told there were patients “much more ill than Neil.”

• Another scan we were told would be booked ASAP never happened. Four days later a forgotten request was found in Neil’s notes, despite assurances when I attempted to check on progress that efforts were being made to move him up the list. By this time, we were told there was no point in having more tests, Neil's condition had deteriorated to the extent he was going to die soon. I remember a conversation with a junior doctor I hadn't met before around this time whose words went along the lines of "I am sorry your husband has cancer." Baffled by his response to my questions, I replied I'd known a while.  

• A palliative care team wasn’t informed of Neil’s presence in the hospital until 48 hours before he died, I felt so very strongly about the nurses’ dismissive attitude and the fact that we weren’t afforded a single word of kindness before Neil was transferred to the specialist cancer ward where he died after spending five days on a general medical ward.

• Raising the point of how we were spoken to, I said in my letter to the hospital:  “You may not find this a significant complaint but I can assure you that faced with the anguish of Neil’s condition such dismissive treatment from an overworked nurse cut like a knife. In hindsight, knowing he had days to live, I am baffled how anyone working in such an environment could find this communication acceptable.” 

• During our five-hour wait to see the doctor on the night of Neil’s admission, an elderly woman patient came and took Neil’s blanket, accusing him of stealing it from her. There was not a member of staff in sight to come to our aid in the face of a clearly agitated woman and I was alarmed by how she was scaring Neil. I told her to go away and leave us alone.

• When Neil returned from x-ray after being admitted, I couldn’t find his drip. I found a nurse to tell and she said she had taken it off. I was worried about how long he had been without it but got no further explanation. I asked for it to be refitted and some 20 minutes later it was. Had I not have left Neil to go and find a nurse and request the drip was returned, I dread to think when this would have been refitted. I considered keeping a patient hydrated a basic part of care and was upset that this was not being achieved – especially when this was the reason Neil had been sent to hospital.

• It is a huge source of grief to me that Neil’s last days were filled with such chaos. I feel so much grief that we didn’t continue to look after Neil at home instead of him enduring what we did.

My complaint:

I wrote seven pages of complaint to New Cross Hospital, Wolverhampton around a month after Neil died when I could find the words. After a month my complaint hadn't been acknowledged so I rang and was told the letter must have got lost in the post. Later I was told more time was needed. The final response which came two months after I made it was five pages of apology which sought to reassure me my complaints were taken seriously and improved training/communication was under way. Reading the answer to the points I raised sent me into a panic attack - the second since I was given the news Neil would die within 48 hours.

The hospital’s response: (Signed by Kevin Stringer, Chief Financial Officer on behalf of David Loughton CBE, Chief Exec Royal Wolverhampton Hospitals NHS Trust )

An investigation was carried out.

On our care in EAU:

They acknowledge the way we were spoken to was unacceptable and apologise. They outline how requests for information should be met with respect and courtesy. They say we should have been treated with more sensitivity.

They say my raising questions about training was appropriate and outline the training they undertake and add that the EAU isn’t an ideal place for terminally ill patients. They say staff now work closely with the palliative care team to provide necessary support. (I think but can’t be sure this means a result of my letter which is a comfort.)

The missing scan request

They say it is not clear if the request was ever received.

Our experience with the drip

They say fluids should not have been stopped and are ‘deeply sorry’ for what happened, staff have been spoken to.

They say our experience was below standard and my concerns are being discussed further at a team governance (quality) meeting in order to ensure protocols are in place to prevent a recurrence.  

Neil’s fall:

They are “extremely sorry” he fell while in their care.

They apologise that no advisory signs were displayed over Neil’s bed.

All staff have been reminded of the importance of such signs

Visiting times

They apologise these weren’t extended for me

Lack of basic care and hygiene

They apologise that the appropriate care and attention required was lacking. All staff have been reminded of the importance of undertaking comfort rounds

They apologise that staff reaction to a request for a wash led me to take matters into my own hands

Loss of kindle

They apologised for the poor experience we experienced

Poor communication

They are sorry I felt we weren’t given enough information and also wish to apologise that I felt staff didn’t offer appropriate support at this extremely difficult time and at times they behaved inappropriately, adding to my distress.

My experience will be shared with relevant staff at team meetings and directorate governance forums. An action plan will be developed in response to my experiences.

Conclusion:

They were very concerned to read of our experiences.

“Please let me say how sorry I am for the additional upset caused to you and your family at this time. I hope you are reassured that your comments have been taken on board by the nursing team and group managers.”

Important note:

The care Neil received in the specialist Deansley cancer ward at New Cross was amazing from lovely, lovely people. He was there for five weeks in one go at one time, and he eventually died there. St Giles Hospice were also phenomenal through their home care and counselling services and a bed was ready for him, but he never made it. Perhaps if the palliative care team at New Cross had been told earlier we were there, who knows, he may have. 

Macmillan blew us away, helping Neil walk so he could accompany me down the aisle at our wedding. A happier memory is how the nurses and doctors at Deansley stood and clapped as he inched his way down the corridor with a walking frame after weeks of not being allowed to move and losing all mobility, thanks to his remarkable determination and the unswerving commitment and patience of the Macmillan physios. His consultant Dr Simon Grummett never treated Neil with anything less than complete respect, care and dignity, his support for us and his hopes of helping Neil live longer through innovative treatment brought us great comfort.

  

What not to say to a bereaved family

A couple of weeks back I wrote a piece for Parentdish on this very subject:

What not to say to a bereaved family.

It was something I really wanted to write about and it was quite a cathartic process. My friend Helen read the piece before I sent it and said that I sounded very angry.

I think that's a key aspect of grief that can be overlooked. People think you will be sad, despairing, heartbroken you name it, and of course you are, but rage can be equally overpowering.

Think about it. Perhaps like Lisa, whom I quoted in the article, you lose your husband 24 hours after learning he is ill, you are 35 years old and you have two young children.

Then someone tells you: "I know how you feel, my rabbit just died."

I think you'd be pretty angry too.

It's a puzzle to me as to why we don't talk about grief much. I'm grateful for all the kind words and concern people have shown me over the past year or so. I'm sorry I sound so angry.

But I'm getting there.

Thanks for reading.

Getting on

Last night I dreamed me and Neil were renewing our wedding vows. There was a lot of kissing, laughing and cuddling and our girls were with us, smiling and so proud.

As I began to wake, I fidgeted a little in bed and reached out my arm to where Neil would lie. That brought me back to reality with a jolt and I cried my eyes out.

I dream about Neil regularly. There was a massive difference though this morning as after my tears I smiled and thought about how much we loved each other. So you could say my dream was a comfort, rather than something that only made me sad.

My wonderful friend Kim has always told me that when we dream about someone we love who is no longer with us, that means they are still here and want to remind us of that. She says Neil is telling me he still loves me and right now I choose to believe her.

In general things are getting better. I have had pneumonia and whooping cough and had to have tests on my heart, these proved to be absolutely fine so that was one hell of a relief. With a period of prolonged illness and the repeated experience of sitting in medical waiting rooms, there was a lot of time for memory and reflection -- much of it all-too painful.

But on a hugely positive note, my flashbacks have lessened.

People have been telling me for months that the "first" of everything after someone dies is the hardest -- a birthday, a Christmas, anniversaries and of course the day your loved one was taken from you. But I wasn't prepared for how much I would be bowled over by being ill. The reality of being a single parent and having to get on with all that involves really hit home, as well as the absence of a "rock" who has been there for so long, offering unconditional support emotionally and practically.

Then my girls went on a school trip for a week so I had the opportunity to head for Wales with my mum and our dog and I slept for days. I must have so needed it.

I feel like I have turned a corner, having recently spoken directly to a doctor who caused us untold anguish. When he apologised to me, I felt 10 feet tall, I came out of his room and said under my breath to Neil "I told him Darling, I bloody told him." That's after five pages of apology from the hospital, the spark for so many of my flashbacks.

I've also organised for a bench to be sited in a place that holds lots of precious memories for our family, with a plaque saying 'In loving memory.' This also brings me some comfort.

Day to day I am getting on, I have had a first session with a grief counsellor through an emotional well-being service and she couldn't get a word in. She said that it was very early days for me, that I am "incredibly self-aware" and that I am doing "amazingly well." I don't mind admitting that is good to hear.

I cried my eyes out in her session and when I asked her what she wanted to say to me as well as listen, she said: "What can anyone say to someone who has lost the love of their life?"

Then she told me it was okay for me to be happy again.

Whaoh, that's the big one. I think I'll get back to you on that x

Thanks for reading.

Sometimes it's okay not to be okay

I can't remember which kind soul once told me this.

It was in the days I was blogging about mental health, having worked with a branch of Mind.

Now I have found myself reflecting on this simple yet striking sentiment many times in recent weeks.

I have been having the most vile flashbacks to things that happened to our family and feeling overwhelmed by sadness. My memory continues to be very problematic. This has made my usual daily routine of writing and looking after customers, almost impossible.

Being keen to continue at work has created more problems than it has solved. It's a bitter pill to swallow.

I so want to wave a magic wand, to feel okay, to live life to the fullest for me, my children and my lovely Neil, and find it very hard to accept that it's not possible. So I end up beating myself up for being useless. This has to stop.

Last night as I lay in bed, memories cascaded through my mind. But they were happy memories. This has to be a step forward. I have been trapped a little in bad, bad memories, genuine, aching trauma that my mind and body has struggled to process.

After an initial burst of getting on with things at work and declaring I was now going to be 'braver' in business as a result of my situation, I have come to a grinding halt.

Unfortunately (or fortunately, I can't make my mind up which) medical professionals agree. I am clear and they are clear, that I'm not depressed, but I continue to feel anxious and invent negative scenarios purely through stress. My GP sent me to an emotional well-being service (lovely name, so much better than mental health) where I burst into tears at the start of the session, when the question "Who do you live with?" was the trigger. It didn't take long to be told I was suffering from Post Traumatic Stress Disorder.

People who care about me asked what happened next and how this will be treated. It makes me laugh that actually I can't remember! I think I'm on a waiting list.

Meanwhile I fight every urge that says PTSD is a load of nonsense and urges me to get a grip.

I've also been diagnosed with Type 2 diabetes, following in the footsteps of close family members. My high blood sugar levels have affected how tired I have been feeling and I'm on medication.

This makes me feel crap too - I have been overweight for far too long. But the tablets are working and I am starting to feel more alert. The connotations of laziness and greed that lie behind a Type 2 diabetes diagnosis inevitably play on my mind but I have to be positive and optimistic about my health. For me and my girls it's imperative, now more than ever, that I continue to lose weight (I am a good two and a half stone lighter than I have been.) I don't want to stay on the medication long term and have already significantly lowered my blood sugar through a change in eating habits.

So often I have dished out advice, to family and friends that they need to be kind to themselves.
I need to do the same.

I've been told everything I'm doing, including work and going on holiday is a distraction and that I need to grieve properly. "Shut the door and cry," were the exact words.

So that's what I have been doing. My head feels like it's full of candy floss. 

I've also booked some complementary therapy. What would I say to a friend who has been through all I have? I'd say give yourself a break and stop judging yourself so harshly. Give yourself permission to take time to heal.

Grief is something that has to be let in properly to then be let out, this I try to understand. When I think about what I'm still seeing, I have to acknowledge overcoming that needs strength. But that strength means being strong enough not to pretend to be okay. My neighbour tells me even being upright when faced with such pain is an incredible achievement. 

I need to start to believe her.

It's okay to not 'get a grip' or 'get on with things' or pull myself together sometimes. I am doing my best and that will have to be good enough.

Thanks for reading. 

Stuck

Apparently, my grief is stuck.

I've been having a bloody nightmare. Too often I have found myself blundering around, on a different planet, incapable of remembering something that happened last week or five minutes ago.

Sometimes the pain is unbearable.

I've felt things build up through the day, going from a mild feeling of unease in the morning to what I'd call a complete disconnection and a head full of fuzz, by the time it's evening.

All the time I am wondering if I have slipped into a clinical depression.

With emotions so close to the surface, my temper has been short and I have yelled in desperation at the smallest thing. I've doubled up in tears and got a parking ticket on a day I ventured out in connection with official matters. I've been buried in mountains of paperwork and after an initial spurt of 'getting back into it' at work, I was forced by way of being a bumbling wreck, to spend some time by myself at home. I felt safe in front of the telly, watching crap. There have been painful tears, helpless crying in supermarkets as I remember stuff from this time last year or the following months.

Songs on the radio have me in floods.

Flashbacks are coming thick and fast.

I felt that the more time that passed since we lost Neil, the further away he feels and I can't bear that. I remain grateful for all I do have, our beautiful children, wonderful family and friends and remind myself how much worse off so many people are.

I have answered my own question about whether my state of despair comes from grief, depression or perhaps both. I am clear that I'm not depressed. Any whiff of that and I would be straight to the doctor, I have always promised myself that, but sometimes it's hard to know the difference.

My grief has turned messy - violent snot-filled episodes of holding a jumper I bought Neil to my chest and howling in the small hours. It helps to let it out.

Our lovely grief counsellor says she would like to see me more often and that I will bring Neil closer again by thinking of good times. She acknowledges how hard that is but that  I have to try.

There have been times when I have been able to think of Neil and smile, on the aeroplane when we went away for a week, for example, as I imagined him there with me. But most of all, recalling how much we loved each other and the laughs and care we have shared, just makes me worse. It hurts too much and sometimes, I get furious that we can't still do those things.

But today, for the first time in ages, I have not only found my way into work, but returned after a lunch break. I realise how lucky I am to have been able to build my own work to the extent I can still be paid and not be here. I need to get on with it.

So that's what I'm doing.

Now when I feel stuck I think of the fact that Neil wouldn't want me to sit there doing nothing. I know he would want me to be kind to myself and to take my time. I don't think there's anything wrong with still grieving for the love of your life months or years after he is gone.

But his words that I shouldn't become a victim are ringing in my ears and I am simply doing my best. Writing it down helps. Thanks for reading.

Why can't I say the W word?

That's widow by the way.


There's a new book due out called A widow's guide to sex, love and relationships.

It's a novel -- not a self-help book :) -- and has reportedly bagged the writer a $700,000 advance.

Here's what author Carole Radziwill says about her work:


I couldn't help but wonder...Can sex and love co-exist peacefully? Are widows the new virgins? Are men biologically hardwired to spread their seed? The Widow’s Guide to Sex & Dating is a novel about death, sex and love, in that order.

And here's an opener about the plot:

While Claire Byrne is on a writing assignment in Texas, her philandering husband Charlie is struck dead in an absurd collision with a rare bronze sculpture. In the odd weeks that follow – funeral, Xanax, a swarthy undertaker, and mounting bills  -- Claire braces for her new life. She surrounds herself with an eccentric chorus of friends, psychics, storytellers and Jungian shrinks to guide her way. 


Described as based on real life but not autobiographical, it's tapping into a fascination with how widows relate to the opposite sex.

The salacious tome has already grabbed the sort of column inches more earnest authors can but dream of.

But it makes me feel a teensy bit queasy. When do we ever hear of widows as anything other than a stoic older woman forever living in the past or at the other extreme, a sex starved predator for whom other people's husbands are easy prey?

I'm neither and nor will I ever be.

"Are widows the new virgins?" what on earth does that mean? I don't know but I do know the answer's no.

I'm interested in finding out about how we view widows and how stereotypes may be challenged.

Do you know of anyone or anything I should read about to help me as I find out for myself what it's like to be a widow? What resources would you recommend?

I'd love to find out more -- even if I can't bring myself to say the word out loud.

Thank you.

Sec Ed feature on helping bereaved pupils

Thank you to everyone who replied and offered their insights about helping bereaved children at secondary school.

The resulting piece is published today and you can read it here.

I'm pleased to have been able to contribute this feature and hope that it can help raise awareness of how grief isn't a straightforward journey for teenagers.

Thanks for reading.

Helping bereaved children at school

I'm working on a feature for a teachers' magazine about how staff can help pupils whose mum or dad has died. The wonderful charity Winston's Wish reports that this happens to 22,000 youngsters every year in the UK - that's one every 22 minutes.

Support available varies from school to school. Heartbreaking stories abound about how a lack of support and understanding can add to children's anguish. One little boy at primary school whose solider dad was killed in Afghanistan was refused permission to take in his medal, because it was feared it would upset his classmates.

At parents' evening I was taken aback when a teacher began to tell me he felt one of my daughters was 'letting herself down' by not concentrating fully in lessons recently. As this came around a month after Neil  died, I had no hesitation in butting in and telling him that as far as I was concerned, her getting out of bed and making it to school was enough of an achievement for me and cough, she most certainly wasn't "letting herself down".

"My mum rocks," she announced later and for once I took a compliment. I felt it was important for me to politely say to the teacher "let me stop you there," and important that my daughters saw me do that too. I'm affected by an inability to concentrate much four months on so the thought of them being reprimanded for that so early on was upsetting.

But overall I have to say that my family's experience of help at school has been hugely positive. Both my daughters' form tutors, their head of year and their headteacher have been very supportive, patient and understanding. 

Their on-going support and readiness to work with others has really made a difference and brought me genuine peace of mind that my daughters continue to find school a lovely place.

But it's such a shame that the support available is so variable at a time of such agony and can have a profound and far-reaching effect on the lives of so many children. Teachers need to be aware of the unique needs of bereaved children and recognise the challenges they may bring to the classroom, learning about how best to respond to them. That's where training from Winston's Wish can be so vital. 

Have you got an example you can share of how your children were treated at school when they had lost someone so very close? (This isn't for the purposes of my article, I'd just love to hear from other parents about their experiences as I'd love to see it discussed more.) 

I'd welcome any comments on this, named or anonymous and would like to possibly use the responses in a future blog post to help others. Thank you for reading. 

  

Children and bereavement: Families share their stories

This week I wrote a piece for Parentdish about how to help bereaved children grieve.

It wasn't an easy piece to pitch, write or see published. It gives a glimpse into how we are all facing up to things in the hope of helping others.

I once worked on a project involving research on how to support bereaved children.

As it's not online, I thought I would rewrite and edit it, as well as adding in some bloggers' wisdom.

This is a much longer version of some of the information included in the Parentdish piece.

Carrying grief with you

Of course, just like adults, no two children are the same when it comes to how they handle  bereavement.
I discovered that experts - and by that I mean bereaved people, will tell you that you don't 'get over' grief, you carry it with you and learn to live with it, day by day.
And while for adults and children alike that acceptance takes time, for children it also takes longer to understand what has happened.

Their understanding, reaction and on-going grief will also be further influenced by their age.
Joanne Mallon, also then from Parentdish, wrote this excellent post about how to talk to your children about death after Michael Jackson died. It's a great starting point and I'd strongly agree that Michael Rosen's Sad Book is a must-read for any child who has lost someone dear.

Stories of loss
Joanne's own brother died when she was nine.

I asked her how she remembered him.

She said: "My son's middle name is Jonathan. He looks very like him, but we have to remember that Isaac is his own person. I often talk to my children about Jonathan, what he was like - partly to remember him and also to give them some insight into disability.

"They talk about him - and their other relatives who've died - as angels, all together. My daughter writes little letters and prayers to him and we have a photo of me and Jonathan in the living room. I only go to his grave very rarely - his grave is in a cemetery in Belfast (right next to those of the IRA hunger strikers). I find graves very depressing. "

Karen, whose dad died when she was nine, said: "For children,  death is understood in terms of what it means to them, so if someone they love has died, it means they won’t see that person again and that makes them sad.

"It’s what made me cry when mum broke the news, and when I cried over the next few weeks and months it was always accompanied by the phrase ‘I miss Daddy’.

“I don’t think children are scared by death at all, certainly not in my experience.

"In fact I’m still not scared by death and I think that’s because it’s been openly talked about and experienced in my family – my mum’s sister died within a year of my dad, and my dad’s father too.

“We can forget how literal children are. As adults we understand implied meaning, but children may not always –

"Daddy’s gone away is a really unhelpful way of saying ‘Daddy’s dead’.
“I always joked that the highlights of not having a dad was that I never had to run my boyfriends past him, but in truth I so desperately wish I had had a dad."

A Mum Shaped Hole

You may know my lovely friend Laura from her blog Are We nearly There Yet Mummy.
But have you ever read what she calls her 'more serious' blog, A Mum Shaped Hole?
She says: “My mum died when I was nine, this is me trying to make sense of that. I am now 30 and I still struggle without her. The only way I can describe it is like having A Mum Shaped Hole in my life.”

Here’s an extract from a post, about how Laura's mum would treasure her grandchildren.

Would she think they look like me?
Would she admire my handsome boy all snails, scooters and bold adventure?
Would she smile at my beautiful girl all bossy and hands on hips smelling of apples and willful charm?
Would her heart melt when they called her name?
Would she be my shoulder to cry on when life is tough?
Would we laugh so hard that tears would fall?
I wish they had known her, and I for longer
I wish she was here
I miss my mum.

Laura told me: "I feel regret that my grief has affected my life in so many ways. Immediately afterwards was strange. Although she had been ill for two years I had no idea she was going to die. Although, subconsciously, maybe I did - as I remember being told off for humming the Funeral March one day.

"From my dad and sister's point of view it was a huge relief that Mum's suffering had ended. I come from a family where we laugh a lot and don't really discuss feelings openly and I think although I was encouraged to grieve, I was also encouraged to think about the good times.

"I now realise that I use humour as a coping mechanism and don't face things properly. The family motto is 'laugh in the face of adversity'!

"Even growing up I can remember getting cold sweats if the subject of mums came up and would rather avoid the conversation than talk about it and have people feeling sorry for me.

"It's only now that I can openly discuss my Mum and rather than feel embarrassed, feel proud of her.
"I became very clingy towards my dad and just wanted to be with him all the time.

"Since having my own children,  my relationship with my grief has changed. Because I didn't have many memories of my mum as a child I felt a bit detached from her.

"But when I had the children and experienced the love that she too must have felt I felt more of a connection.

"I had a long period where I felt so incredibly sad and I still feel panic sometimes when I think that one day something may happen to me and my children will be left without a mother. "

Insomniac Mummy also wrote hauntingly of the death of her mother, who died 30 years ago. To this day, she says, she doesn't know what happened to her ashes or if she has a memorial stone. Look at the comments too, to see not only how bloggers can rally round each other, but also how many stories of loss are yet to be shared.

Then, Insomniac Mummy wrote about her lovely Grandma. 
Englishmum often remembers her friend C and how proud her daughter would now make her.

Single Parent Dad

Another blogger writing movingly about his own experience of grief and that of his adorable son Max, is  Ian at Single Parent Dad.
Ian's wife Samantha died suddenly in 2005, when Max was a baby.

In a recent post about 'grief triggers' Ian says:
My boy understands why too, I do not like keeping things from him, he deserves the truth, however hard it is.

But last week was the first time it upset him.

I explained in the morning, what was ‘significant’ about the day, and while that was not a grief trigger for me, it certainly was for the boy.

While heartbreaking to witness, I was also immensely proud of my son. Proud because he had moved to such a level, gaining a better understanding of his loss, and able to show his emotion for it.

There was plenty of reassurance and cuddling, and we spoke about his mom, and how it was now. While she has physically gone, she will always be part of him, and gave him the best possible start in the world.

Is honesty the best policy when talking to children about bereavement?

Here’s what Cruse says:
In general, honesty is the best policy. However, there are also other considerations. When we talk to children about death we need to speak in language that they can understand. Also for some children we may let them know something about the death and share more information later when they are able to take it in.
“When we explain to a child about a death we may need to repeat what we say. We also need to be able to answer their questions.

"Also all family members need to be saying the same thing so the child does not become confused. It is also a good idea to let the child’s school know what you have said to the child.”

Bereavement counsellor Dodie Graves, from Wolverhampton's Compton Hospice, adds: “Because children can’t always express their emotions easily, understanding how they are dealing with grief can be difficult. It is common for children to want to be strong for their family, and it can be difficult for them to know who to turn to when they need support.

“Families’ bereavement support workers talk to children one-to- one, and with their families, to help them work together through their shared grief.

“They use puppets, games and art to help children express their feelings, and special memory jars and memory boxes to remember the person they’ve lost.

“They can also support families in learning how to communicate better together.”
Winston’s Wish (www.winstonswish.org.uk) has in-depth guidance for anyone wanting to help a bereaved child.

A gradual understanding

Parenting expert Sue Atkins stresses that it’s important to remember that children will not behave like adults.
It sounds obvious, but can be overlooked in these sad circumstances.
She says: “Children's understanding of death comes gradually.”

Sue's article on bereavement discusses how children of different ages may understand about death and grieve.
She says that from about nine years, most children will have an adult view of death, although this will depend on their development and maturity and their past experiences of death.

The best way of understanding what children think and feel about death is to listen carefully and to talk gently with them and be guided by them.

Many parents feel that childhood is a time free from difficulties and challenging events but in reality this just isn’t the case- but it’s how you handle the challenges that makes your children grow up well balanced, resilient and strong -able to handle the blows life deals them.

Sue adds: “It’s perfectly natural to cry in front of your children - if you explain what you are feeling."

What children going through loss need:
• Information
• Companionship
• Time to express their emotions
• Time to remember.
I’m very grateful to Sue for allowing me to use this information. She's a mum to two teenagers and a former deputy head teacher. She's also the author of Raising Happy Children for Dummies. Find out more at www.positive-parents.com


Where to find help:

Winston's Wish Helpline: 0845 203 0405 (Mon-Fri 9-5pm) Childhood Bereavement Network Tel: 0115 911 8070 Child Bereavement Trust
Tel: 01494 446648 (General)
0845 357 1000 (Information/support line)

Cruse
Helpline: 0844 477 9400
Road for you – part of Cruse helping young people: www.rd4u.org.uk

Compassionate Friends
Helpline: 0845 123 2304


Books you may find helpful


*If you would like to share a story of bereavement or offer any advice to families facing the darkest of times, please do leave a comment and let us know any links to posts you think may be helpful.

* A version of this post was published on an earlier blog.

* Some of the comments with useful information, that were originally added, will also appear under this post.