LAUNCH PAD!!

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Well, I had a book launch.

I. Had. A. Book. Launch.

It still doesn’t feel normal to say that sentence.

Other than Mum’s funeral, it was the biggest, most important event of my life. And it was magical. One week on and I am still glowing with all the love and warmth that filled that room. I felt so happy. And everyone else seemed so happy too. Yes there were tears, and there was a painful tone to the evening, with the felt absence of so many loved ones. But there was also joy and gratitude that the lives and deaths of those people had brought us all together. Below are a few photos of the night.

I have had some amazing responses to the book already and each time I read a new comment I feel moved to tears by the idea that my experience and what I chose to do with it might have helped someone else in some way. Even if it only helped out one person in a time of darkness and uncertainty, I would feel that this whole journey has been entirely worth it.

In a moment of shamelessness and pride I want to share a few of the comments I have received.

I’ve noticed the book working because at first I was a bit embarrassed to read it on the tube (in case people thought I was weird or sad) and now I’m holding it up proudly almost daring people to ask me about it. I now want to talk about grief!”

I am getting so much out of reading it. My mum has been reading her copy too and it has been wonderful to discuss it together”

Spent lunch on Sunday with my family all crying (in a good way) thinking about you and your mum and the book and they were telling me what it was like when their parents died. The book is working already! We’re talking about grief.”

A veritable Mozart of the pen….you tell the world things it did not know but needed to know.”

I started and finished the book last night in one sitting…I wish I had had the support when my dad died. I had no one and no one to tell. At 14 I lied and said he was still alive at times. Thank you for writing this beautiful book.”

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10 days to go…

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In 10 days my book We Need to Talk About Grief will be available for the public to read. Yikes. Its clear to me, and by now I’m sure many people, that I’m rather fond of writing publicly about raw and painful personal material. But, there’s something significantly more revealing about an entire book on the stuff being read by lots of strangers. I sort of feel on the cusp of having my journal published. That’s not to say that I regret any of this – quite the opposite. I am excited and hopeful that it reaches the hands of anyone who is in need of this book. But, I have noticed as the publication date approaches, a new kind of anxious anticipation emerging; the anxious anticipation of what it will feel like to display my soul to all. I can feel myself internally gearing up…preparing to really own what I have achieved and communicated to the public. In truth there have been times when I have wanted to run and hide, pretend it wasn’t me, but that fear is slowly shrinking away. And particularly after having just commemorated Mum’s 3rd Deathday, the timing feels right.

So, fingers crossed! If you want to read some other bits and pieces I’ve written about my experience, and the book, you will find a piece in Woman and Home magazine and Psychologies Mag, both out this Friday. There’s some other exciting publicity coming up but I’m not allowed to say anything yet – so just keep your eyes and ears peeled!

My first review

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I got my first little book review in Bookseller last week. I couldn’t stop crying for several hours after reading it. It took a while to understand why I was crying so much. My tears were not so much the result of being moved by the kind words of the reviewer, (though of course that was part of it) but they seemed very much more because of the absolute pride I felt for Mum. Every time I read it, I felt like I was reading about something that Mum had done, not me. And that’s true in a way. This book is Mum’s legacy. None of this would have happened without Mum’s life – and death. And so, this entire journey has and continues to be a collaborative effort between Mum and me. We’re a team and I’ve never felt it as strongly as I did when I read that review.

My reaction to the review also highlighted just how much this experience of writing and publishing the book has really forged a deep and infinite sense of connection with Mum. Since Mum died, I’ve heard many times from people “she’ll always be with you.” And whilst I believe that, I don’t often feel it. But this book really does it for me. To me it’s a real manifestation of the eternal connection I will have with Mum, and that’s more than I ever expected or imagined possible when I set out on this project.

If interested – you should be able to see the review by clicking the link below.

https://anniebroadbent.files.wordpress.com/2014/08/bookseller.pdf

 

 

Farewell Mary

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Mary has died. She died peacefully at St Christopher’s Hospice. It still bewilders me that one can be so prepared for someone’s death and yet be so distraught when it actually happens.

Mary had deteriorated rapidly this last month and I went to see her twice in the hospice before she died. The first time I visited, I was so shocked by the changes I had to go to the family room with one of the nurses. She was so skinny, and could barely keep her eyes open or move her body. The most shocking thing was how much she – or that experience – reminded me of mum. There I was, two and half years after my mums death, stroking another dying woman’s hair, holding the pink lollipops of water to her mouth and putting Vaseline on her lips. When I walked out of the hospice that day, it was the first time since I’d started volunteering that I questioned my decision. Why I had I put myself in a position where I would be doing that again so soon after seeing my mum die? I was suddenly more aware than ever that I was facing the unavoidable death of someone else that I love and care about. And I had put myself there. Why had I made those choices?

To be honest I’m not entirely sure. But I do know that it was the right choice. And one I don’t regret for one second. It enriched my life in ways that I will probably only now begin to understand, and I know I made a difference to her in the last year of her life too.

The strangest thing about losing someone in this capacity is that it is a totally isolated loss. When I got the call from the hospice, I had no-one to tell. Obviously my friends and family know about my relationship with Mary and would want to know, but there was no-one I could be bereaved with. My relationship with Mary was entirely distinct from all others. It had its own unique definition. It is no surprise then that my first instinct when I found out was to write this blog post. What else am I to do with this feeling?

 

One book down…

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Well my book is finished. Signed off, ready for production. It feels really strange. As with most big deadlines, one builds up to it, and fantasises about feelings and reactions…and of course nine times out of ten, the reality is always significantly different. But I could never have predicted how bereft I would feel. Ironic isn’t it, considering the book is about dealing with the bereaved. I’ve adjusted now, but for a couple of weeks I felt like I didn’t know who I was anymore. And it is only now, not having a book to write, that I can really see how much the experience has been just as much about coping, as it has been about communicating a message to people. In writing about my grief, I was making meaning out of the pain of losing Mum, I was doing something with the pain, using it. The pain has lessened, enormously, but it hasn’t disappeared. It will never disappear. And so I am now faced with having to choose how to bear this pain without my previously effective coping tool. I have this blog for one, but actually I’ve realised I must now let there be space for this wounding to just be there.

And of course the meaning I’ve carved out of my experience continues in my work with Mary, who is still going, just about. She is now in the hospice more than she’s at home, and has finally surrendered to her helplessness. She admits that things are ‘not good’ and is totally shameless with her anxiety of being alone. In many ways it is a relief, but I have surprised myself by how much I miss the feisty Mary in denial. Gone are the days of wishing she would face up to reality. Now I am once again playing the waiting game, with her. It’s sad, especially as she is so isolated. It will be even sadder when the time comes. But mostly, it’s a privilege to be there with her and accompany her on this final phase of her journey.

 

Dos and Don’ts of Being with the Bereaved

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On Friday 11th April I gave a talk at Death Salon UK at St Barts Pathology Museum – a conference where individuals who work in the death industry, or have an interest in death/dying/grief, gather together to share their experience, with the shared goal of subverting death denial in society.

It was a great event to be a part of not least because I got to promote my book – which by the way – I have finished!

I struggled for a long time to think of what I could possibly say at the talk – I felt, what with the blog, and Psychologies and the book, that I had said all I needed to say about death and grief. But then I realised it was the perfect place to share some of the nuggets of gold I had acquired through my research for the book – those are the Dos and Don’ts of being with a bereaved person.

So I did just that to the large audience on Friday and it seemed to go down quite well. I thought it only fair to do the same here. So below I will take you through 3 Do’s and 3 Don’ts on how to be a friend to the bereaved. I know this will not apply to everyone – grief is unique to each person – but having interviewed many people who have been bereaved, I can say with confidence that there are some things best avoided, and others which tend to go down well. Use your own discretion.

1. DO make a joke about the awkwardness of the situation.

I know this might surprise some of you, but the thing is, death and dying can be funny, and it’s a great way to acknowledge the enormity of whats happened to your bereaved friend. Sadly, it seems that many people assume the bereaved lose their sense of humour. Personally I think I was at my funniest when mum died. This is probably the effect of shock and trauma, but a few giggles to ease the pain were greatly appreciated so I obviously liked it when this was mirrored back, rather than being responded to with sort of appalled foot shuffles.

2. DO share memories of the dead person . . . in letters and conversation.

Jokes shouldn’t come at the cost of sincerity and vulnerability. We need to work on being OK with these softer, scarier emotions…both feeling them ourselves and seeing them in others. All of the people I interviewed said the letters they still remember are the ones which talked specifically of the deceased – mentioning things they did or said, and acknowledging the relationship lost, as well as the person was also a successful recipe.

And sharing memories should continue. Very often the bereaved feel more alone in their loss later down the line, because most people seem to forget. Hearing that others are still thinking of your dead loved one can be incredibly consoling. For many people, death is only final when the person is forgotten by all those left living, so when others keep them alive through conversation and sharing memories, its a great reassurance.

3. DO offer to do something specific.

I would say about 90% of the people I interviewed said the first thing their friends said to them was “what can I do?”

Well, don’t. The problem is it puts the onus on your friend to come up with a job for you. And if they’re struggling to get dressed, eat, leave the house, do even the most mundane daily activities, it’s not likely they’ll be thinking clearly enough to give you a list of jobs.

Most people I interviewed said the most memorable things people did were unasked. Simple things like collecting them from some destination or other, inviting them over, cooking delicious food.

So, assess your friends circumstances, and then offer something specific.

Now for some no no’s

 1. DON’T hug as a default action

Hugs are tricky. They often come as quickly as the ‘what can I do’ question, but in just the same way, its frequently more for the supporter’s benefit than it is for the bereaved. I often felt like I was being muzzled when people launched into a hug, especially if they were people I didn’t know very well.

Its best to take a moment to try and read the body language of the person – often when someone is reaching out for human contact, you can see it…if you can’t, then its likely they just need space.

2. DON’T try to stop someone crying.

For some reason, tears frequently arouse awkwardness, even though crying is such a human manifestation of emotion. And because of this awkwardness, some people I interviewed told me they were often met with a cooing of “ssshhhh, don’t cry.”

I think this is the worst thing anyone could do. What they probably don’t realise is that its normally ONLY when you’re crying that you feel close to the person who’s dead – that’s why you’re crying – because you remember them and the fact they’re gone forever – so yes its painful, and yes its ugly and snotty – but its GOOD!

The best thing you can do is tell them to keep breathing. At least that gives you something to say, a way of making your presence known.

3. DON’T pretend you don’t know

Or rather, always acknowledge the death, even if you don’t know that person very well. In simply acknowledging the death, you enter into the bereaved person’s world. The problem with not acknowledging it, especially so early on, is that it puts the bereaved person on mute. They no longer have the opportunity or permission to be sad if they need to be, or talk about it, because the people around them haven’t opened up a space for it. And in those early days, it’s incredibly hard to carve out that space yourself.

If someone simply says, ‘I’m so sorry’, or even gives a knowing look and squeeze of the arm, its not likely to send people crumbling to the floor in tears, but they will still want the facts of their life in that moment to be recognised.

So there you have it – a snippet from whats to come in the book. Feel free to disagree/agree – tell me your experiences/thoughts/ask questions.

 

 

 

When it’s my turn to die

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I’ve recently taken on a new role at the hospice. Every Wednesday morning I help out in the gym. I love it. The day begins with a morning meeting where staff and volunteers gather to run through all the day patients that are expected in, and update on whether they are “less well”, “better” or “dead”. The care and love I see in the eyes of every staff member when they talk of their patients is quite extraordinary. I am then given a list of in-patients who have expressed an interest in some exercise, and a list of the day care patients who are coming in for physio. After a quick cup of tea in the Anniversary Centre (the main hub of the hospice) and a chat to the patients and volunteers,  I head up to the wards in the hope that some of the patients will still be feeling capable of some exercise. So far, only about 3 in 10 of the patients on my list actually end up coming down to the gym with me. Most of the time they just can’t face getting out of bed. The hardest thing about this moment in the day is seeing the shame and disappointment in their faces.

The rest of the day involves me ferrying patients back and forth from either the ward or the anniversary centre to the gym. Then I might assist them on their motormed machine (amazing arm and leg machine that moves your limbs for you if you are too weak to do it yourself) and chat to them about their day. Everyone’s favourite exercise is the Wii balance game…there’s a little competition going on between staff, patients and volunteers. Ronald, a 93 year old patient is currently in lead place.

Each week, at the end of the day, I find myself bouncing out of the hospice, filled with this amazing life force. Even though I’m spending more and more time with people who are facing the end of their lives, not always bravely and readily as we might hope, I find my time there so incredibly enriching and uplifting. Not because I’m thinking “thank god them and not me”. It’s hard to explain, I just feel like a nicer, better, happier person when I spend my time there with these people. I feel softer. And life feels lighter.

In fact, last week I got talking to a patient I hadn’t met before. He is about 87 and has no teeth. He began telling me with great enthusiasm of all the things he loves about the hospice and I found myself looking forward to my turn at being a patient there. I had a vision of myself at the hospice, old (hopefully) and probably rather grumpy, sitting next to my favourite friend, chatting to the nice nurses, going to art class and so on. It was quite strange. It wasn’t a longing to die; there was no urgency there. I just had this wonderful sense of OK-ness at the idea of dying and more specifically, dying there.

Having said that, I’m not trying to glamourise dying in a hospice. Plenty of the patients are terribly unhappy and feel a whole mix of unpleasant emotions…shame, fear, rage, guilt. And as hard as the medical team work, sometimes the pain relief just isn’t sufficient and many of them are hurting all the time. Its quite shocking to see the physical manifestation of the way in which human bodies deteriorate, en masse; to see the way our internal organs crumble and disintegrate, one by one, until they all come to a halt. I have found myself feeling angry at times…that this is the way some of us have to depart the world. And yet others get knocked over by a bus and don’t know a thing.

Even so, ever since I’ve witnessed the dedication that goes in to making those last painful moments as bearable as possible, I’m still not certain I’d go for the quick route out.

The Brave Doctor

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Mary finally heard the words that no other doctor has been brave enough to say…that her disease is going to kill her.

I sat next to her, watching her avert her eyes from the computer screen, which showed her tumour, as she listened to the doctor tell us that there is nothing more they can do to stop its growth.

Just over two years ago I was sitting in the same place next to mum hearing almost identical news…that there was nothing more they could do. That time though, I was sent into panic and despair. On this occasion, I felt relief. I feel slightly ashamed to say it, but I just couldn’t feel sad for Mary. I just couldn’t. Nothing about the information we received that day felt wrong, or unfair, and thats not because she’s not my mum. I have grown to love Mary, and will be sad when she dies. But, amongst many other factors, I guess a large part of it is the old devil of comparison, which makes me think “well, at least she made it to old age”. She herself even said it.

She attempted once or twice to formulate a question about her prognosis, but couldn’t quite get the words out. The doctor was brilliant and wouldn’t answer anything unless he was certain he had understood her question. He then directly asked if she wanted to know about timelines, to which she immediately and rather aggressively said ‘no’. Once again it’s that constant battle she fights, between the frightened and uncertain part of herself who wants to know when she is going to die, and the feisty and independent part who just wants to get on with the time she has left, whatever that may be. Sometimes, being in dialogue with her feels like I’m with someone with a split personality…she flits back and forth between these two parts so quickly, both of which she plays very convincingly. It’s quite exhausting.

So, there it is. I am relieved. I am relieved the facts are out and I don’t need to pretend anymore. Mary will continue to oscillate between pretending and remembering the facts, but at least a part of her knows the truth. And I can concentrate on doing the best job I can, to accompany her on her journey as she comes to terms with this news.

Slowly giving up

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It’s happening. She’s dying. Back in hospital again. In the space of a week she’s halved in size and is drained of any colour. Apparently she’s losing blood…but no-one knows where from. She smiled happily when I walked in to the ward. And I genuinely felt pleased and relieved to see her there alive. This was quickly followed by an overwhelming sadness at the inevitable fact that she is going to die. And I think quite soon.

She was slightly drugged up, eyes a bit glazed, slurring, but on the upside she was incredibly chilled. She acted as I imagined she would if she got stoned…sighing in a relaxed way about not really knowing what on earth is going on and laughing about not going out partying tonight. She still slipped in the occasional ‘when I get better’ but it felt so much like she was just on auto pilot, as though she’s so programmed to that way of being that she wasn’t even conscious of the words coming out of her mouth.

It’s the fighting not to be an ill person she seems to have let go of. She hasn’t given up on life. I’ve never seen anyone get so excited about a new chair as she did that afternoon. She asked if I’d popped round to her house to see it while she’d been in hospital, as though word had got out about this chair and everyone in the world would be rushing to see it. She said “I couldn’t believe it was for me when I saw it arriving, oh its so beautiful”. I was moved. Of course her joy for this is absolutely understandable. Her entire life is spent sitting in this chair. Every day she wakes up, barely gets dressed, lights her fire, puts her TV on and sits on her chair until it’s dark and time to go to bed. That’s it. That’s been her life since I’ve known her and it will be until she dies. So no wonder. And because of that I am quite seriously looking forward to seeing it.

Death Day

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I think I’ve cracked. Mary went into hospital again. This time because she fell over several times at home. She is covered in bruises and has an absolute corker of a black eye. I had my first experience of NOT wanting to leave her. I’m not sure I’m going to be able to articulate what that’s about – I’m still unravelling it in my head, but as ever it is connected to mum. I think…I think that in some strange way Mary reminded me of mum. I know that might seem obvious, but I don’t mean in terms of their experience – I mean almost physically. There was something similar about them when Mary was in hospital. Mum was absolutely stunning. And in brutal honesty, I haven’t spent much time thinking that of Mary. But there was something different about her this time, aside from the bruises. She looked happy somehow. Despite bruises and being bedridden, her face was brighter and she smiled more. And she has some similar mannerisms to mum…the way she rolls her eyes when waiting for the doctors, or teasing her bedside neighbour. She has lost so much weight and wasn’t wearing her glasses so I could see the structure of her face more…and anyone that knew mum would remember her cheekbones. I really felt, for the first time, a connection with Mary that went deeper than just my role as a community support volunteer. I felt related in some way. Oh Shit.

Mary is now back at home but things have changed dramatically. She has carers in three times a day, walks with a stick and has moved her bedroom downstairs. Although she still exclaims in horror ‘I’m not old! I want to get better!’ I think she’s actually relieved and happy to have the constant company and care that being less able and more ill has provided her. Since my ‘cracking’ moment, I have settled in to my role more comfortably and enjoy coming up with new recipe ideas for her energy drinks, and suggesting new ‘sitting’ activities like crosswords. We also went for a walk up the road the other day, no more than 20 steps, but the effect on her spirits was phenomenal. I’ve never seen anyone’s face light up so much just from stepping outside their front door.

I think this has all been compounded with the looming reality of Mums Second Death Day this Sunday on 13th October. These past few weeks I’ve found myself reaching for my phone to ring mum, thinking things like ‘oh I must tell mum about that’, hearing the door go and for a split second thinking ‘there’s mum!’ These are things I did constantly after she died. But I haven’t done them for months. Its strange how my internal body clock is going ‘nows the time Annie…now’s the moment your mum died’. In contrast to last year I don’t want to be involved in a big group ritual to remember her. I feel a distinct need to remember her with my own private ceremony, my own personal, one to one ritual. So this year I’ve decided I’m going to burn the letters I have written to mum since she died. And then I’m going to scatter the remaining ashes (which are STILL in a tupperware in my desk drawer!) in my new garden.

See you Sunday mum.