Terminal/Bereavement Support

What if your diagnosis is terminal?  To be given the news you are going to die is beyond words, but to be given that news when you’re planning a life as a new mum, a new family…

Most new mums can just take for granted that they have a life of being a parent and seeing their child grow up that spreads over the many years ahead.  But to be told you don’t get to have that… the emotions that arise then can be overwhelming.

To have to face saying goodbye to everyone and everything you love – including your tiny baby – and trust that someone else will bring your child up is so, so incredibly hard.

How you approach this can range from ignoring it completely and not wanting to talk about it or face it right through to saying goodbye, planning your own funeral, making memory boxes and writing letters for the years to come, so your child can get a real sense of who you are and that you are there beside them or in their hearts even if you are not physically present.

As with all the information here – it’s up to you – nobody else can decide what is right or wrong for you but perhaps talk to someone close to you, your partner, or your health care provider or a therapist to help you work out how you want to say goodbye and what you want to leave behind.

As facing this alone is so, so scary and you are also going to be grieving all that you are losing as well as facing your thoughts about dying and your child’s future.

There was never going to be any easy way to explain to M what Mummy was now going through and what was very likely to happen in the coming days so I decided to stick to what had always worked her and that was to be honest in a way that she did understand.

I toiled with the idea of taking M in to see Mummy in hospital knowing that seeing her in a now very sick state could be really difficult but I wrestled with the idea that better to have given her that one last chance to see Mummy and get upset rather than not taking her and then in years to come she may have resented me for not having given her that last chance.

As it was M was okay on the day and Mummy was able to tell her how much she loved her.

I sat down and slowly reminded M about the lump in Mummy’s booby. I went on to explain that the lump had turned yucky and that it had gone somewhere else where the medicine didn’t work anymore so Mummy had got very sick and would not be able to come home.

How do you explain death to a child? I didn’t have a clue so again I was honest and related it to things that M did understand or know about. I explained that the following week there would be a big party for Mummy where she would be surrounded by her friends and family and she would turn into magic fairy dust which would turn into the brightest star in the sky

If you’re unsure – I suggest always allowing a child to lead by giving them choices, do you want to visit mummy? What songs would you like to have at mummy’s funeral? Do you want to see mum get her hair cut? What shall we do together today? Would you like to know more? Do you have any questions? That way when they are older, there will be less chance of regrets and resentment that they were not allowed that goodbye or those treasured moments together.

Dying is always a tough subject and all the above applies – but the questions that bring up the most fear seem to be – should I allow a child to be there when mum is dying and what about the funeral?

Well, again, you know your child best, but once again choice plays a big part…Ask a child, involve them to the extent they want to be involved, being prepared to know that if your child changes their mind, there is someone and somewhere they can go instead.  Some children really value and want to be part of the whole process, including seeing what Mummy looks like after she has died and being at the funeral, others do not, both are ok, we all grieve in our own ways and children are no different.  If we accept their choices without judgement then they know that you are there for them to talk to and cry with regardless and that they are safe to explore their choices and change their minds.

Children of different ages do respond differently – younger may not understand what death is and benefit from books and explanations that allow them to explore this – but still its only when mum does not come back for that birthday or has been gone away much longer than usually, that they start to really understand and grieve that she is not returning.  Some children really want to explore the details of it, what happens to your body when you die, what is cremation and where do you go?  If you can answer them, if it’s too hard and upsetting for you – find someone you trust who can.

But remember children learn most from you – so model that it is ok to cry and to grieve and to look after yourself – they don’t have to be strong all the time, and neither do you!! Also allow them space to be happy, young children can’t handle long periods of grief, so may seem to jump in and out of it – one moment consumed with grief, the next acting like it never happened and completely joyous about the snowman outside!! It’s not because they don’t care – it’s just children don’t have the same emotional capacity we have to stay in grief for long periods.  They may also revisit their grief as they grow and their understand grows and deepens, what they understood aged 3 is very different from what they understand aged 13 – so they may grieve over again with this new understanding.

The other big thing I would suggest is don’t use metaphor – we want to make this easier so it’s natural to want to avoid words like dying or death, but it can be confusing for a child.  I.e. she has gone to sleep can leave a child terrified of going to sleep or mum has gone away – well why what did I do that’s so bad she left me?

But we all have different beliefs about death and dying, honour your own and find the way that fits for you to tell your child, perhaps also acknowledging that we don’t ever know for sure and there are lots of other beliefs out there – so that when they get older they can feel free to discuss that with you too.

Lastly if you know you’re dying, maybe make a memory box, or book with your child, collect memories and wonderful times together, in fact, making memories with your child in all sorts of forms is good even if you’re not dying – it’s going to happen to us all someday and to have that special box or scrap book is a priceless gift to a child regardless of what lies ahead.  And if a parent dies and we didn’t get to do that for whatever reason – then make time to do that with them, make it a special time to collect together and talk together of the person you are all missing, a time when you can bring that special person alive again in your hearts, to cry and laugh and share.

“Although the world is full of suffering, it is full also of the overcoming of it.”
Helen Keller

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