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Bereavement

Find bereavement help and support from other Mumsnetters. See also your choices after baby loss.

Friends 5yr old has just weeks left.

24 replies

Yogabuff · 29/12/2010 21:04

My very best friends 4yr nephew old has terminal cancer. I've known her brother (the dad) most of my life. They are a lovely family.

He's been sick for a year, the tumour has grown bigger and is causing the child a lot of pain. All they can do now is give him morphine. It could be weeks or even days the doctors can't say. Sadly I know some mums and dads on here have lost their beautiful children and I was hoping that you could give me some advise on how to help, what to say. Was there anything you did or didn't do towards the end that you're glad about or that you regret. I'm think specifically if you told the child what was happening, that he/she was dying? How do you explain this to a 5 year old, do you explain it? Where their support groups that helped? Did anyone say anything that brought you comfort?

I just want to do something but like everyone else I feel helpless and all the while I'm thinking thank god it's not my baby.

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Yogabuff · 29/12/2010 21:05

he's 5 he just turend 5...

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spilttheteaagain · 29/12/2010 21:26

I couldn't read and not post, although I don't have experience of this sort of situation as I lost my daughter before birth.

I'm so sorry for your friends and the little boy, such an appalling thing to happen.

The only advice I could give would be about relating to bereaved parents - the worst thing people can do is say nothing. Keep in touch (maybe not face to face initially) and talk about their little boy. Remember his birthdays and the anniversary of his death and let the parents know you remember him then. Don't be afraid of their tears.

Wishing you all a lot of strength to bear this terrible terrible loss x

Alibobster · 29/12/2010 21:32

Yogabuff I have no advice to offer but I read your thread and just wanted to say how sorry I am for this family. They must be in hell.

Why do terrible things happen to good people, especially innocent babies. Life is cruel and unfair.

God bless this little boy x

ClaireDeLoon · 29/12/2010 21:35

No helpful comment to add other than I'm very sorry, words seem pointless to say how awful for all xx

knottyhair · 30/12/2010 07:51

So so sorry. Just to reinforce the excellent advice from spilttheteaagain. My best friends lost their little girl a few years ago, and they said that the worst thing was when people either avoided them completely (because they didn't know what to say or do), or when they just didn't mention their daughter - seems unbelievable but it happened a few times! I know that it means a lot to them when the anniversary and her birthday is remembered in some way by people outside of the family. In the meantime, just be there and don't be afraid to cry with them.

Flightattendant29 · 30/12/2010 08:23

I'm really sorry.

The only thing I can think of is that I heard, and this MAY be inaccurate, that morphine can sometimes cause pain itself, paradoxically. So if he is able to be given something else it might help him more - the dose needs increasing all the time once you start on opiate based pain relief.

My friend died from cancer and at the end was pain free - she had stopped morphine some weeks earlier and was on low dose naltrexone (LDN) instead.

So she was more lucid etc. I don't know if this is feasible or not. It may not be in this situation.

So sorry x

Yogabuff · 30/12/2010 09:30

Thank you for all your comments, I've suggested they ask the doc about nalrexone. I really hope he has some good days. He opened all his Christmas gifts but hasn't been well enough to play with them yet so I'm hoping he gets a few good days to have some fun.

thanks

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pinkhebe · 30/12/2010 11:46

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pinkhebe · 30/12/2010 11:50

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elastaelf · 30/12/2010 12:01

Im so sorry to read this. I think the best thing you can do is just be there for them.

Do they have enough practical help, someone running the house, cooking meals etc so they can just be there for their son. Just picking up some of the strain of day to day living can really help.

The palliative care team should manage his pain and will decide the best drugs to use. they are usually very good.

It is helpful if you are there to talk with them about their son. My mum has just died and I have been horrified how some friends and my ex just dont mention her at all, like she never existed.

Also, do you know if they have any faith, if they do it can be a source of comfort. But if like me and my family , they dont, it can be quite disconcerting when people talk about her being in 'a better place' Hmm

pinkhebe · 30/12/2010 16:12

This reply has been deleted

Message withdrawn at poster's request.

Rosa · 30/12/2010 16:29

SO sad....no help or hints just feel sorry for all concerned...

stripeybumpsmum · 31/12/2010 16:58

We've been experiencing this incredibly odd situation of late. DD age 3 is receiving chemo and has become friends with a boy age 5. He was expected to last for a few weeks, but it is now 9 weeks since being told the cancer was terminal. Every time we see the parents, we have a quick hug and a 'see you when we see you' type chat as we know they will leave the hospital once he has died. I don't think he has been specifically told he will die - which is fine, that is the parent's choice - but I would be surprised if he hasn't worked it out himself. OUR choice has to be completely honest with both our DD and her brother about what is happening to her.

We have spent a lot of time talking with this boy's parents and other parents and all agree saying nothing is the worst thing that you can do. Even saying 'I am really sorry, I don't know what to say' is enough. I would also add that it is unhelpful to say 'I don't know how you are coping' because the reality is they have no choice to deal with things in any way different to how they are.

I think you should break down what you can do into three time frames: now, immediately after death and the longer term.

For now, you just need to continue providing practical and emotional support. Anything domestic will be forgotten so just making sure you drop food off at home or hospital for them will help. Small, frequest contact works for us: texts rather than phonecalls (they know you are thinking about them but can call you when they need you rather than a call intruding on what might be a difficult time).

Ask them if they mind you visiting hospital to spend time with them as a family: even if the child is out of it on morphine, it is just nice to spend time holding hands, reading, just be a reassuring presence. And you can sit with the child whilst they go off to shower or eat - something they will be reluctant to do. If you are a trusted friend and they are reassured you will get them if anything happens, that might help.

Prior to/immediately after: depends on how the parents are, but I know our friends have been comforted by being able to exert some control over the funeral arrangements (the only control they have in a frighteningly uncontrollable time). Don't be afraid to talk about the inevitable and offer practical support for the arrangements. I felt so helpless hearing about our friends, I went and bought them a picture frame to help fill the house with photos, a bottle to toast his life and a candle. The candle was part of a private joke with the mum but also so that their home smelt very different from the last hours of their child (antiseptic wash, hospitals, medicines, illness etc). Both mum and dad said all three appreciated.

After: I am no expert on bereavement but my brief experience is that you may have to accept them pushing you away in the immediate aftermath as the constant stream of cards and messages (which will becoms a comfort in the future) are exhausting. Sure if you google 'grief cycle' or read the bereavement threads you will get a simple overview of the various stages of the bereavement cycle. I've found the macmillan and clic sragent sites helpful. From what I recollect of supporting DH when his mum died in quite tragic circumstances, the friends who continued to make small frequent contact were the most helpful, especially on key dates. One friend warned us that the second anniversary/xmas etc were the hardest as people had remembered the first, but the second kind of caught them bereaved out.

That is a bit of a brain dump for now but I hope it helps. Your friends will have to prepare themselves for a whole gamut of emotions, some of which are expected, some not. I know our friends are now at the stage when death will be a relief and they are already anticipating the guilt that will follow that emotion. Hard, really hard.

Yogabuff · 01/01/2011 09:03

Hey thank you all for you kind messages.

They have said it's upsetting how many people say nothing and stay away. Remembering the key dates is a big one. After my fatehr died it was like everyone forgot him.

stripeybumpsmum I hope your DD is doing well with her chemo and that you all get through this the best way you can.

Thanks for taking the time to reply, it was really helpful.

I will you and yours good health and good times in 2011.

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Yogabuff · 20/01/2011 23:30

He died last night rip little man xxx

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WonderingStar · 20/01/2011 23:36

Sad I saw this thread the other day but have not posted before. I am so sorry for your friends' loss - and yours too.

you sound like a wonderful friend - you will be needed more than ever now.

x

travellingwilbury · 21/01/2011 10:17

I am so sorry Yogabuff , how are you doing ?

TheUnmentioned · 21/01/2011 10:19

im so sorry x

Portofino · 21/01/2011 10:33

Oh that is so sad! Sad My thoughts are with you and his poor, poor family. May he sleep peacefully.

Bairyheaver · 21/01/2011 11:00

I am so sorry [sad ]

tobytoes · 21/01/2011 18:24

Hi,just wanted to say how sorry I am to hear this sad news.

My baby was born asleep on 1st jan this year,and the only advise I can give is how we felt basically.We,husband and I,just wanted to be left alone,we hated the cards and the phonecalls and the pity really,still do.We havnt really seen anyone since he was born. But I guess everyone is different. I hope they can find the strength to get through it together.xxxxxx

Ineedtotalk · 28/01/2011 06:29

tobytoes

I am so very sorry you lost your baby. I hope you have the strenght to get through it. Just try and take good care of eachother and yourselves.

IngridBergmann · 28/01/2011 06:41

Oh no Sad

Poor little thing.

I'm so sorry.

Ineedtotalk · 28/01/2011 10:29

tobytoes

I am so very sorry you lost your baby. I hope you have the strenght to get through it. Just try and take good care of eachother and yourselves.

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