Why We Need To Reconsider How We Engage With Bereaved People

We – our society – needs to change how we deal with the bereaved.

Why is that? You may ask.

Because losing someone you love is difficult enough, living without someone you love is heartbreaking enough, living day by day is exhausting enough without the added frustrations and torments contributed by those who exclude and patronise those living with grief.

The  patronising comments and exclusion are usually unintended, I know. That knowledge does not make the sting any less, though.

In the 15 months since Hugo died I have been told I am a ‘conversation stopper’; been told ‘God will give me another baby’; seen the fleeting moment of terror in a stranger’s eyes when I have told them about my son.

I have been aware that people have trodden on eggshells around me. Sometimes those eggshells have been scattered because people haven’t known how to approach me (which I kind of understand, but life hasn’t exactly been easy for me either).

More often, those eggshells have mounted up because death, grief, bereavement is put in to the ‘too difficult’ pile.

You see, in our culture we are scared of death, of grief, of bereavement. That means that so many of us don’t know how to speak to those who have suffered a loss.

Before Hugo died, I was one of those people. Wanting to be kind, compassionate, empathetic but not wanting to say the wrong thing. I cringe when I think back to talking to bereaved people before losing Hugo; I can remember tripping over my words, saying I’m really sorry for their loss.

No one is perfect. We can all make faux pas, we can all blunder and put our foot in it. This isn’t about berating people for trying yet not quite getting it right.

This is about reconsidering how we engage with the bereaved – as individuals and as organisations.

It’s vital to say that many people – family, friends, and strangers alike – have been absolutely incredible in their support and making sure we know that Hugo will never be forgotten.

That said, many negative experiences compounded my heartbreak, and led me to be something of a hermit for several months because life in the sanctuary of my home was easier to control.

I have been upset and disappointed when Christmas cards omitted Hugo’s name, and his birthday forgotten by people who were unsure of what to do for the best (clue: ask).

I was frustrated to learn that bereaved parents are excluded from the Picker Neonatal Survey. Perhaps that is from a point of view of being sensitive – but it is patronising. As described in this post, a significant portion of views is therefore missing from the results, so how can services know what they do well, and what needs to be improved for bereaved parents?

I wrote a couple of weeks ago about how I was told because I had recent experience of birth trauma it is ‘almost impossible’ to have a balanced discussion (this also applies to loss).

As part of my #MatExp action for June I encourage everyone to #saytheirname as a way of helping people overcome their reluctance to talk to bereaved parents about their baby. The idea behind that is that parents can then talk as much or as little about their baby as they wish.

The point is to put the ball in the parents’ court. Put your own momentary discomfort to one side for a moment. Let the parent make the decision to talk or not talk about their baby for themselves.

Me and Hugo

Me and Hugo

Earlier today a national organisation I had applied for an unpaid role at told me I had not been shortlisted. There were two reasons: the first was a lack of experience at the required level of seniority – fair enough. The second reason made me feel very cross indeed: the panel felt there had not been enough time since Hugo’s death, and I was ‘not ready’. They prefer for parents to wait at least two years, as part of their duty of care.

A duty of care is important, of course. Of course it is, especially when dealing with sensitive issues as this was.

The trouble with such a policy is that it forgets people are individual. It forgets that grief ebbs and flows over time, meaning judging a bereaved person’s time since their loss is impossible.

To broadly generalise, grief does change over time. It doesn’t get ‘better’, it gets ‘different’. That means that as time goes on, there are more days that I feel better able to cope, having developed my own coping mechanisms. But it never goes away. Ever. There are days when I wake up feeling like all the progress I have made has gone. Times when I feel so, so tired from the weight of grief, and knowing that this is forever.

We need to remember that grief can be like floating along in an ocean. Sometimes it is placid, sometimes it is a tempest.  We need to remember life in general can be like that, too. We none of us know what tomorrow, next week, or next month will bring us.

We need to be able to ask open questions, listen to the responses, and take account of individuals’ situations.

We need to remember that there is no right or wrong way to grieve, no time limit on grief, and that everyone’s journey is personal.

My heart is irrevocably broken. But I get up. I am strong, I am a fighter. I campaign in Hugo’s memory.

I have used the pain of my experiences and put it towards positive, constructive use. I have not become bitter and angry – but with such frustrations, assumptions and being patronised in the way I can see how it could be possible to become bitter and angry.

People who are bereaved often get on with things. We have little alternative choice. Sometimes, we have need a bit of extra care and consideration (on a low day, or anniversary, say). But you know what? That makes us no different to any other human being.

We should treat everyone with kindness, empathy, compassion and respect. We should respect everyone’s individuality. We should understand that life happens. Death happens. That life is a part of death.

Perhaps if we did that there would be no need tread on eggshells, or reminding people to #saytheirname.

And by not having to constantly fight to feel heard, or worry about other people’s feelings bereaved people would have one less weight off their mind, one less thing to tire them out.

That is why we need to reconsider how we engage with bereaved people.

What a Week: Time to Refocus

What a week! There are many lovely and exciting things to tell you about, dear readers.

But first, a moment of reflection. I’ve been distracted from my blog (I’ve really missed it!) and from my usual self-care techniques by some upsets with people about whom I care deeply. The upsets were on social media – as wonderful as social media is, misunderstandings are bound to happen from time to time. I’ve been at the receiving end a number of times and whenever the other person has apologised, I’ve acknowledged that while their comment hurt, I know it was unlikely to be intended and accepted their apology.

Anyway, this time my words were the cause of unintentional upset and for some reason my apology seemed to make it worse. To cut a long story short, I made myself physically ill with the stress of it all.

So, I am taking a step back and reassessing what is important in my life, and what I need to focus on. Firstly myself: I reminded myself of the very wise advice I wrote in this post. By trying to make other people happy, I wasn’t meeting my own needs – not by a long shot. I am who I am – candid, honest, enthusiastic and passionate about getting on and making change for other people’s benefit. I have a dry sense of humour, and with that I am kind, considerate, compassionate, and empathetic. I know I am a good person, I am happy with who I am and my motives for doing what I do.

My first step towards self-care was a lazy morning and a long cuddle with Fat Cat that we both thoroughly enjoyed.

The reason I mention this is the same as I mention anything on the blog – not to ‘pick on’ anyone or to make them feel bad, but to make a wider point about reflection and thinking differently. I am all about the bigger picture.

I am now doing my Taylor Swift dance, shaking it off and focusing on the positive. Ready? Let’s go!

Channelling the messages from my fab business cards (except for the 'fat' part, of course).

Channelling the messages from my fab business cards (except for the ‘fat’ part, of course).

Work

My phased return to work continues to be much better than I anticipated, I am relieved to report. My manager and colleagues are wonderful; very kind and supportive, and understanding of my needs. Colleagues have welcomed me back, telling me I have been missed, and that they are glad to have me back. No one has pried, which has really helped me manage my feelings of anxiety and vulnerability.

Another huge positive is that I am helping lead a project about my great passion – patient experience. It’s really exciting, and it’s great to have something to feel excited about.

There is still a long road ahead of course, but so far so good.

Neonatal Parents’ Meeting

On Wednesday I went to London for a Neonatal Parent Advisory Group meeting. It was tough – there were tears from me – but such a constructive meeting. Sadly, the other parents who attended have also experienced loss; I appreciated being, for the first time, in a group of people who really ‘get it’. We are going to be working together to use the benefit of our experiences to help other families, which feels to me to be a privilege.

Maternity Strategic Clinical Network Meeting

That meeting was followed by attending this meeting to talk in front of around 100 people about Hugo’s Legacy, my involvement in #MatExp, and my experience of a Whose Shoes workshop as part of a presentation about the campaign and the pilot workshops.

Talking about Hugo's Legacy and MatExp at a maternity Strategic Clinical Network conference.

Talking about Hugo’s Legacy and MatExp at a maternity Strategic Clinical Network conference.

Don’t tell anyone, but my week had been so busy I prepared my talk 30 minutes previously – I think I did alright. Lovely people came up to me afterwards to say Hugo’s story had really moved them, and I am also going to get involved with the work of the strategic clinical network to help shape better support for women who have similar experiences to mine.

I also really enjoyed the chance to have a face-to-face chat with #FabObs Florence Wilcock, after spending so much time communicating online. I have just realised we should have got a selfie!

Butterfly Awards

The wonderful Mel, who is behind the Butterfly Awards has invited me to give a speech inspiring other bereaved parents to share their stories, and to highlight why people need to put their temporary discomfort to one side and take the time to really listen to the stories. The invitation came about my latest #MatExp action, and I was honoured to be asked to and to accept.

I am also honoured to be shortlisted in the author/blogger category in the awards for the second year running. I know you will all be delighted to learn I’ll be asking you to vote for me again in a couple of months’ time!

My latest #MatExp action selfie

My latest #MatExp action selfie

Other exciting things…

It’s naughty to tease I know…but I have been invited to some other things that I can’t tell you about yet, but I will as soon as I am able!

Self-Care

The kind people at Lumie have sent me a SAD and energy desk light to review – the idea is it helps prevent the slump that usually prompts me to hunt down some chocolate. I’ll be letting you know how I get on.

Most excitingly, I’ve been sent a colouring book to review! It’s a hard life, but someone has to put themselves out…and it’s a great reason to ensure sure I definitely make time for self-care.

I’ve also had my hair chopped. It had been getting shorter and shorter over the past year – the new ‘do is a braver version of the graduated bob I had last time. I love it – it is the perfect compromise between a bit of flattering face-framing length and hassle-free lack of length.IMG_20150612_164845

The new 'do from the side.

The new ‘do from the side.

Phew! Right, time for more self-care – and to make sure I have energy not only for the things I need to focus on, but BritMums Live too! I’m very excited to see all my friends.

 Word of the Week: phew!

The Reading Residence
You Baby Me Mummy

Sunday Thought May 10, 2015 – Mother’s Day (internationally)

Today is Mother’s Day in the rest of the world (I got it wrong last week, sorry folks).

Today’s Sunday Thought is a tribute to all the mothers with a part of their heart missing. It is for all the mothers who are spending the day missing a part of their lives, their heart.

For all the mothers who had to give a child back.

If, like me, you had a baby but your arms are now empty you are a mother too.

Today’s thought is for all you mamas who are hurting today. I understand how today is in many ways just another day on the calendar, yet it rubs salt in to those open wounds.

In the UK, Mother’s Day is in March. My first Mother’s Day was just two days after Hugo died. The previous week, Hugo’s condition had improved and I had been so full of hope that I would spend that day giving my baby a cuddle. Instead, I spent it in bed, sobbing, and not wanting to see a soul.

This year’s Mother’s Day was difficult too.

My Mother’s Day was eased by the balm of kindness. Kind family members, friends (both real life and those who I have come to know on social media) sent me messages to say they were thinking of me, thinking of Hugo, and that I would always be a special Mama.

I had to give Hugo back. There will always be a Hugo-shaped hole in my life. Such small kindnesses make the pain a tiny bit easier to bear.

So if you know a mother missing a part of her heart today, send her a message. Let her know you are thinking of them. Mention the child’s name. Hearing her child’s name won’t upset her any more than she is already – I know that can be a common fear. Believe me, it will mean the absolute world to her.

It doesn’t matter what part of the world you are in – whether Mother’s Day is today where you live, or whether the day has been and gone. While knowing you are being thought of on symbolic days is comforting, mothers whose children live on in their hearts rather than in their arms endure the pain every single day.

Mothersdaygiveoneback

 

Sunday Thought May 3, 2015: International Bereaved Mothers’ Day

Today is apparently Mothers’ Day in most parts of the world. Here in the UK, Mothers’ Day is in March. Who sets the dates for these things?

But that doesn’t matter. Today is also International Bereaved Mothers’ Day.

Today’s Sunday Thought is with the latter in mind. The thought comes from Angela Miller, the author of the wonderful I Am The Mother of All Mothers book that my heart and soul really needed so very much.

 

AngelaMiller

It is human nature, I think, to offer advice when someone is hurting. It is a kindness, we may think, to make the pain go away, to make the person better. Sometimes it’s appropriate, sometimes it’s not. Sometimes it works, sometimes it doesn’t.

The bereaved get a lot of well-intentioned, unsolicited advice. I hate being told what I ‘should’, or ‘should not’ do. Too many times I have had someone talk at me. Perhaps they were trying to comfort me. But what I wanted to do was to tell my story, my way, in my own time.

They have assumed they know how I feel – assumptions based on their own experiences, perhaps, or things they have read.

We all grieve differently, in our own time, in our own way.

There is no right or wrong.

No ‘shoulds’ or ‘shouldn’t’.

As a result, I can be reticent to tell my story face-to-face, especially to people I don’t know, or trust.

Mothers who have lost a child suffer enough. Try not to offer advice if it is not asked for, however well-intentioned it may be.

Just be there.

Listen.

Hold their hand.

Give them a hug.

Send them a note, a message, a text to let them know you are thinking of them.

Because my world ended when Hugo died. My world has been clouded in the world of grief, a miasma of swirling greys.

Thank you to everyone who has been walking with me, helping me to see in colour again.

I imagine other bereaved mothers hold similar sentiments. If you know such a mother, please hold their hand, too.

New Guest Post Series: Life After…

Life doesn’t always work out the way we planned, or hoped. Sometimes things that happen to us are out of our control. These unexpected events can change our lives completely. Somehow, though, we have to carry on. We have to live the life we have, after.

My blog is about my life after two life-changing events that happened to me last year. The events are related: my pregnancy nearly killing me (I had HELLP syndrome, which is rare pregnancy complication that can cause organ failure) when I was just 24 weeks pregnant, and my much-wanted, much-loved baby son Hugo dying just 35 days later.

I will never be ‘over’ the death of my son, or what happened to me when I was pregnant. My acceptance, if you can call it that, of what happened to me changes like the tide. Acceptance or no, however, I have had little choice but to live the life I have now.

Life after Hugo has been really, really tough, challenging, awful, terrifying, sad, heartbreaking, devastating, exhausting. Living with grief and trauma is like that.

But I have survived, I am surviving. I could not have imagined saying that this time last year.

That is why I thought I would start a new weekly guest post series on my blog, ‘Life After…’. It is open to anyone who has had any life-changing experience (it could be bereavement, a life-threatening illness or accident, abuse, breakdown of a long-term relationship….this is not an exhaustive list).

The purpose of the series is to try and give hope to others experiencing similar issues. To let others know that (dependent on the nature of the life-changing event) things may never be ‘better’, you may desperately want things to return to the way they were even though you know that is impossible, that life after can be really, really tough – but you can survive.

If you would like to tell your story, please do get in touch. You can email me at headspace-perspective@outlook.com. While not wanting to prescribe how you tell your own story, as a guide you may like to include a bit about yourself; what happened; how it changed your life; and what your life is like now. You may also like to talk about what you found helpful and unhelpful, and things like coping strategies.

I look forward to reading your stories.

LifeAfter