For instructions on grief, please read this leaflet…

Dear Doctor,

You’ve stood with me on this journey

You saw my daughter being rushed into your ICU

You stabilised her

You kept her young body going

Gave us hope after hope that she might wake up

You showed empathy when that hope was gone

We’re sat together in the treatment room

Now so large without her bed in the middle

She’s just died

The line stayed flat

She didn’t linger like you said she might

You’ve taken her body to theatre

Her organs might at least help someone else

Someone in our shoes

We’re numb, tense, feeling sick

You sit a while and listen to us talk about her

We’re not believing she’s really gone

But it feels good to talk

To share that she was more than just another patient

She was our wonderful girl

She still is

Then you start being practical

Talking about getting death certificates

Organising funerals

You sound as though you’ve said this a thousand times

Deliberately slowing your words so it doesn’t sound so

I can’t focus through the mist of tears

You give us leaflets to seek help about everything

That’s it

We go home, leave her body behind

Your job is done

Our daughter’s life ended at her death

Our lives have changed beyond recognition

We find ourselves thrown onto a road we feared to travel

The journey has only started for us

I am in pain

I’m not feeling well now, Doctor

It’s my turn

I think I’m really very sick

But I’m an adult, a grown up

I have my own mind

I know what I want

I shouldn’t need you anymore

You see, I think my mind has broken

With the trauma of what I’ve seen

But then I have those leaflets

What happened to them anyway?

Perhaps they’re under the pile of sympathy cards?

Maybe they’re in the bin?

But it doesn’t really matter

Because I can’t read for crying

I can’t comprehend the words

Death, grief, funerals, legal stuff are a foreign language

I don’t know what to do

I need a hand to hold mine

I need ears to hear me when I can’t speak

I need gentle guidance to do what I must

Why do you expect me to know what to do?

Why do you think you, or I, will know what I feel?

Do you honestly believe I’ll have the strength to pick up the phone and say

‘Please stranger, please help me understand why my daughter is gone’

‘Please tell me why I can’t stop crying?’

‘Please explain why my chest hurts so much?’

‘Please show me how to care for myself and my family in the same way, without her here’

‘Please help me understand why I don’t care about conforming anymore’

‘Will I ever care enough about school or work again?’

‘Does it really matter if I don’t recycle my newspapers or pay my bills?’

‘Please tell me why I can no longer tolerate certain people’

‘Please tell me what to do when I’m standing in a queue and my legs buckle’

‘or the tears spring from nowhere and I get strange looks’

‘or I start shouting at the person in front of me for not knowing that my daughter is gone while he complains about queuing’

‘Please show me how not to run, run away from it all and leave my most-loved behind to pick up the pieces’

‘Because I don’t think I can face it’

But flight is not an option

I cannot run away from this

Now I’m scared and you doctors all seem like aliens to me

While I once trusted you when my throat was sore or I had a nasty bug

To take my pain away

To make me better

Now you are looking at me lost

I’m the one with all the knowledge

I’m the more experienced one

You don’t know what to do

This won’t be solved by a prescription

You have no pill for what I’ve been through

You tell me to talk to a councillor, there are plenty around

So you give me another leaflet

Your job is done

But all I’m left with

Is another piece of paper with ink on it

Ā *******

When a person dies, the hospital does their job, but that stops with death, when the body is passed to the funeral home. Don’t get me wrong, the doctors do wonderous work; we felt supported by them, but after Abi died, we were alone. The bereaved are simply left to it. People assume we are being ‘looked after’ by someone, that’s simply not true.

Bereaved parents are left to work out for themselves what help they need and then to make the effort to find out what services they can have access to. The ‘leaflets’ contain the numbers of so many services – all offering help but it’s almost too much choice. Where do we begin? Telling your story to even one stranger is a big deal, imagine how many times you have to do that to get to a point where you find a therapy/charity/councillor that can help you? Our loss feels diluted, like we’re calling around to find the best deal, we can’t even speak let alone think for ourselves clearly.

So we don’t read the leaflets. We don’t make that call. We amble along until one day something snaps and we are spiralling out of control. But it’s too late for the ‘gentle’ approach, we now need medication and intervention. We’re now ‘a problem’, all because no one held our hand and showed us the way.

New mums are offered some maternal support in the immediate days and weeks after a baby is born. Those midwife and health visitor visits are so reassuring. To have someone turn up each day regardless and check in on you. This service isn’t great either, but it’s better than nothing. Better than the nothing that we get when a child dies. We’re still people, we still have mental health, we still need support.

It’s World Mental Health Day on Friday 10th October. I would like to think that the world does sit up and pay attention to the needs of those suffering with mental health problems, including those who grieve.

I’m also linking this post up with Baby Loss Awareness Week. The same thing happened to me when I lost my baby, Bella, just two weeks before Abi died. The nurse gave me a few leaflets and cards to seek counseling and that was that. I felt like I’d been hit by a bus and wanted to hide from the world. Then Abi died and I was hit again. More leaflets, only this time with even more for me to do. Each doctor knew what I was going through, but the response was the same.

For more on this, please read Leigh’s deeply moving post about Easy and Quick Access to Counselling after Baby Loss. After Leigh lost her baby boy, Hugo, she realised more and easier access was crucial to the support that bereaved parents so desperately need. She’s doing wonderful things to try to make changes to how mums are supported immediately after a loss.

11 thoughts on “For instructions on grief, please read this leaflet…

  1. You are absolutely right that doctors seem unable to deal with the aftermath of bereavement. My mother died on a Christmas Eve after a long battle with Cancer. Her doctor had been wonderful in the final months but ruined everything by shaking my father’s hand as he left and wishing him a Happy Christmas. There seems to be so little proactive support for the bereaved and an expectation that grief is short term. Well done for raising this issue, it’s a message that needs to be repeated again and again.

    • Oh I read that and signed, deeply. That’s so sad and I’m so sorry for that doctor’s insensitivity. I think they see it so much they simply forget that we don’t! It becomes normal to them, another day’s work. x

  2. I couldn’t agree more with all of this. The emphasis is completely wrong, the bereaved should not be expected to be proactive. Thank you for the mention of Hugo’s legacy xxx

    • The charities all need us to self-refer and I can understand why, but doctors don’t like us self-diagnosing so why should we diagnose our own mental health?

  3. What a moving post, once more. It seems ludicrous that, having gone through the worst thing imaginable, you are left floundering and trying to find your own support. That support should be there for you when you need it and carry on for as long as necessary.
    Well done to you and Leigh for raising these issues, so maybe some time in the future people won’t have to go through what you’ve been through. X

    • Thanks so much, Sarah. We have so many amazing charities out there, but they are all stretched to the limits… doesn’t that tell the government something?

  4. Pingback: Word of the Week: Loss | Chasing dragonflies

  5. Thank you so much for articulating what I can’t at the moment. There is still so much lacking, but pages like this are a good place to start. X

  6. Hi, I just wanted to tell you Alder Hey have a bereavement care team, they stay with the family, they take them to Register, they are there so the family can spend time with their child until they leave the hospital together. They offer support. This service should be in all hospitals. xx

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