Is Daddy going to die? What the heck do I say?

[MummyDoIt]

DH is deteriorating (for those who don't know our story, he has cancer of the oesophagus with secondaries in his liver and lymph glands). He's not eating, losing weight and very breathless. He's due a scan and a follow-up consultation but I'm expecting bad news. The oncologist said there was no point in continuing chemo if there was no improvement from the last lot and clearly he's got worse, not better. So far the boys (5 and 4) have just accepted that Daddy is poorly and haven't asked too many questions but the eldest is starting to talk about dying a lot. My Dad died of the same cancer in November and DS knows that Grandad died because he was very poorly and the doctors couldn't make him better. He keeps saying he doesn't want me or DH to die and still wants to see us when he's grown-up and is a grandad. He's also asked me once if Daddy is going to die. I don't want to lie to him (on that occasion I just said that we hoped not) and I don't want them to be unprepared when it happens but equally I don't want to worry them unnecessarily and have them fretting for weeks or even months. Is there a right time and a right way to do this or do you just answer questions as they arise and muddle through?

No experience and no useful advice but just wanted to post to send you love and strength

Oh God, I'm so sorry

The advice that we were given is that it is vital that you are honest with them.

They will know that he is dying and when they are ready to accept this they will ask you for confirmation of what they have already worked out for themselves (young as they are)

Listen to how they as the question. 'Daddy isn't dying, is he?' is asking you for confort and support. 'Is daddy dying' is asking you for information.

It is so hard my love, the hardest thing that we coped with. But if you are honest, it helps, particularly in the long term. Get linked up with your local grief and loss councellors for children, your macmillan nurse will be able to give you the numbers.

You have to be honest so that when you tell them that you will all cope and be ok after your dh dies, they have to be able to trust you

Someone else with no experience but a lot of sympathy. I think just answering questions as they arise and be a bit more forthright closer to the time in the hope that it lessens the shock.

Locally there is a charity called the Big C which provides support for partners and children - a friend of mine with cancer has sought their advice re talking to her children, and they've provided her partner with counselling. Is there anything like that near you?

no experience either but wanted to reply

this organisation winstons wish may be worth getting in touch with

MB, I hoped you'd see the post as I was sure you'd have some good advice. My gut feeling has always been to respond to their questions and answer them honestly but not overload them with information if they don't ask. I think children assimilate information as they go along, taking in what they can understand and asking questions when they come up against something they don't understand. I'll speak to our Mac nurse about the grief counsellors. I really hope I'm overreacting and the news isn't as bad as I fear but DH looks so poorly.

oh this made me cry you poor poor thing having all this to deal with -i cannot begin to comprehend how difficult all this is for you.

its so hard cos you cant build up hopes that could very easily be dashed again and you need to help your ds enjoy what time is left,hes very young to appreciate the life/death concept-maybe you should approach it on the muddle through method day to day??

i was 11 when my mum died of cancer shed been in and out of christies but for a long time when she was at home i would get up nd watch her sleep,watching the rise and fall of her chest in case id never see it again - that spoilt the time we did have left xx

I also have no experience of this but remember a programme about children whose mothers were dying. They were given intensive support and encouraged to make memory boxes and albums and things with their mums so that they would be able to look at them and remember them afterwards, and found it greatly comforting. I'm sure there must be support out there for you.

I'm so sorry that you are having such an awful time. There is a lovely book called Badger's Parting Gifts which might be a good starting point for talking to them - there are lots of other good books about death aimed at children.

I hope that you can find an organisation which can help. You are in my thoughts.

Again no personal experiance, but your post brought tears to my eyes.

I hope you manage to get the support you need

My thoughts are with you

Your gut feeling is 100% right. This is a horrible, terrible thing to have to do, but your children are fortunate to have such a sensible and strong mother. Your feeling is eactly what I was advised to do with mine.

and in an odd way the have a right to know, so that they can menbtally prepare. DD knew before ds, ds now regrets not having that extra time 'knowing' eb]ven though I dreaded telling him.

Your children will astonish you with their strenth I know that mine did me

Can second the suggestion to contact Winstons Wish, they are very very helpful.
They helped me with my son when he lost his dad and grandad.

....I wasn't faced with the long illness of my partner that you have to deal with, but have some relevant experience that may aid you.

....Mrs Goth collapsed and had a cardiac arrest suddenly 2 years ago, was resuscitated after an hour and was ventilated on ITU. The urchins were in bed at the time, so received the news in the morning. Resuscitation is part of my work, so I knew that long term survival chances were nil.

...the urchins at that time were 9, 7, 5 and 5. The 9 year old asked me directly if Mummy would be alright, and I answered truthfully "no". He was upset, but at least he knew what to expect.

...after 3 days in ITU all tests were complete. I took them to school in the morning, having told them that Mummy was going to die later, and we would go and kiss her goodbye. The younger ones (more relevant to you, as similar age to yours) were surprisingly matter of fact. They did cry, of course ("who will be our Mummy now?") but you will be surprised by the questions.

....they wanted to know lots of factual information. Questions which from an adult or older child would sound ghoulish, but they simply just wanted to know. Apparently this is commonplace in the agegroup. I answered these questions in the matter of fact "quest for knowledge" tone in which they were asked. It was hard, but I think the best thing to do. They are now happy, healthy 7 year olds.

The older two were slightly more problematic (my now 11 year old is being assessed as likely Asperger's, and the now 9 year old has always been, er, spirited) but I am convinced that it is best to tell them the truth. Help is available. Winston's Wish are a fine resource, and I found that they give sensible telephone advice. Unless you live in Gloucestershire that is all they offer, but nonetheless I found it useful (and I am a cynical soul, reluctant to accept the platitudes of yoghurt weaving yurt dwellers). I am sure they would give you aid that would be of use now, as will a hospice (if you are involved with this service).

....I thought at the time that if I could face telling this news to the urchins then nothing would ever faze me again. Alas this is not so (I have already been exasperated this morning by arguments over seemingly identical bikes. Don't ask) I am sure, however, that direct truth telling and earnest answers to earnest questioning was the best approach for us.

Good Luck.

Goth, thank you for sharing your experience. Honest answers are definitely the way to go, then, though I dread to think what questions they might come up with! We had some interesting ones at Dad's funeral. I shall look into Winston's Wish as a couple of people have recommended them. While I'm really sorry that you and MB and others have had your own tragedies, it does help to talk to people who know. My friends in RL are very sympathetic and helpful and would do anything for me but I often feel very alienated from them.

Retired goth....weak smile at the quest for knowledge bit.

dd (10 at the time) asked me' Will we still go on holidays?' and 'Will you get married again'!

after dh died ds asked 'Do you thhink he's met george Washington in heaven yet?'

honesty althou difficult is the best way, only answer the questions they ask and wait for them to process the answers, I started by saying we hoped dad wouldn't die, then moved onto to he might die, then yes dad would die, our 3 are much older but their autism makes their understanding very much like that of younger children.
I do have lots of book you can borrow if you like.
I am sorry to hear that your Dh is much worse, email me if you want to I may have lost your email when broke.

children can cope with the situation.How do you.They are young enough to understand and not be fazed.Of course they will miss thier dad but u will handle that as it happens.Look after your self as well.It must be a emotional time for you as well.Your friends in real life have not had what you are going through.Dont know how long you have been married but its so sad cancer.

our very wise Macmillan nurse said, the kids don't worry about other people in the way that we do which makes things easier for them, we worry about what we say to people and how things might upset people so we don't say stuff we keep it locked up. I often bump into people who ask how Steve is, depending who it is and how I feel I tell them he is ok/ dead. Elliot on the other hand will see people he knows and sometimes strangers and say do you know my dad is dead, he doesn't worry he just says it, it's helpful for him thou a bit of a shock for others.

I think it's very true that kids see things in a different way and don't worry the way that we do. Thank god for that.

DS1 has definitely moved up a gear in his thinking. He's started to ask what all of DH's medicines are for and he wants to be involved in looking after DH. Everytime I take a tray upstairs, he wants to come and open doors for me and he's forever clearing up glasses and plates that DH has used. It's very touching.

obviously not on the same scale - but I have 5 year old twins - when our puppy was run over earlier this year they were upset but very matter of fact about it. They were interested in the physical side of things (that seemingly was most real to them) and asked (and still do) all sorts of questions that sound horribly blunt to an adult but are the way little kids face things.

It is probably worth talking to their teachers - my boys were adament that it was what they wanted to talk about in show and tell - and the teacher said they often have kids coming in and talking about x dying (obviously not usually a parent).

I think it also helps them to see that you get upset too and that is ok, and you all come out the other side.

Sorry you are having to go through all this.

I haven't dealt with this exactly but when my sister died her children (6 and 4 at the time) asked a lot of pragmatic questions about who would look after them. e.g

Nephew (4 years old)- Who will cook for us now?

Niiece - Daddy will

Nephew - No I think nonna (my mother) should do it (My mother obviouasly a much better cook than their dad )

They were also interested in how old their mum was, how old their dad was, how old I and my other sister were and our parents. You could see that part of them was struggling with who would be around for them in the future.

Also my niece struggled for a long time with worrying about what would happen if anything happened to her dad.

Throcken - their teachers are aware of the situation. We keep them informed.

Lazycow - that's very interesting about them asking how old people are. My two are obsessed with the subject, always wanting to know how old everyone in the family is. They keep saying they want us all to live to be 100.

When it happens, I'm expecting them to become very anxious about anything happening to me and perhaps others they are close to. I've heard that is a common reaction.

Message withdrawn

this in terribly sad, and really feel for you, maybe you could find a book these are sometimes good and help cover the subject and help them to understand, i think you could tell them the truth, say daddy cant get better and is in alot of pain, and when he goes to the angels he will be happy. i think it may be best if there a little prepared, what a sad time for you all xx

am so for you and your dcs - it must be awful to go through this. I would say that if a child asks directly (as MB suggested) then the honest truth is best - it depends on how the question is asked. From my own experience when my younger brother was very ill (he died of cancer aged 10) I wasn't told but I never asked the direct question (I did think it but was too scared to ask and didn't want to believe that he wouldn't live)
Thinking of you all xxxx

Badger's Parting Gifts is a lovely book as squiffyhock recommends, also Frog and the Birdsong by Max Velthuijs (sp probably wrong there)