Talking to children about terminal illness in the family

[mutha2two]

My father is terminally ill with secondary skin cancer. He has deteriorated very rapidly despite a range of interventions including surgery and chemotherapy.

He is currently in a palliative care unit and we are not really sure what is going to happen next or how the illness is going to progress - the doctors are all pretty vague. I need some wise words about how to handle all this vis a vis my very astute and sensitive DS1 (8 years) and how to talk to him about it. Obviously I want to protect him but at the same time honest communication is important as he is very close to his grandfather. Help very gratefully received on this one as I'm struggling to do the right thing.

I think it is very important to be honest with your DS. He has probably guessed that the situation is very serious already. Kids can cope with more than we think as long as they trust us to tell them the truth.

When my gan was terminally ill when I was 10 I only found out she was terminal when I saw the word "hospice" outside the building when we came to visit her. My mum told me before this that she was ill but would get better. I felt very angry and hurt but could not tell anyone about it as I did not want to upset my family. It made it very hard for me to deal with her death.

So please be honest with him. He will have to deal with his grandads death soon anyway and he will feel so much better if he can trust you not to keep anything from him.

And I'm sending sympathy to you and your family at this difficult time. I hope you all get the help you need to get through.

I was at a funeral yesterday where the youngest mourner was 8: it was his Mum who was being buried. It has been horrendously hard for the family, but I think their openness has helped enormously, the fact that they were able to talk over all aspects of the situation with both their Mum before she left them and with their Dad. I was there when they were discussing with their Mum what they would do with her ashes after she was gone. I admired her tremendously for that.

I brought my own 8yo ds to the funeral: partly because I wanted him to be there for his friend, but also because I wanted him to feel involved and have a chance to say goodbye to a lovely woman who had been very kind to him.

We will shortly be in your situation as my MIL has also got secondary cancer and is getting weaker. I have not told him how bad things are yet (he knows she has cancer), but will try to do so in time.

When my Grand died I felt horribly excluded because I wasn't allowed to visit her in hospital (but they took me round the back so she could wave to me from the window). I wouldn't want ds to be in that situation (not my parents' fault, hospital rules in those days). As far as I'm concerned, we're a family and we're in this together.

So sorry for you cory - my thoughts are with you and your family.

I think it depends how much you feel your son can cope with knowing if you see what i mean.
When my grandad died we all (large catholic family) shared his care at home and in the final days/hours etc all of the children were there, when he died they were there and they all kissed him goodnight.
The youngest was 3 and he put a thomas sticker on his pajamas.

We were very open with the kids about the fact that my grandad ws dying but in an appropriate way for their age.
So, it was in terms of "grandad isn't going to get better so the doctors have made sure he is comfy and cosy in bed. Soon the angels are going to come and help Grandad to go to Heaven."
That sort of thing, the older children asked mre detailed questions and we were very lucky in that one of us is a GP so was brill at explaining things without making it sound all dramatic and scary.

I think the best thing to do is to not make it into a "big conversation" but to give small chunks of info as the situation progresses and changes.

Wishing you love and strength. x x

I'm so sorry about your dad, mutha.

Does your DS know that your dad is likely to die?

When you say that you want to protect him, do you mean protect him from the knowledge of death? Or that you want to break it to him as gently as possible?

I haven't been in this position myself, but am still affected as an adult by having things kept from me as a child. It makes me very suspicious, and even now, at almost 32, the trust between my parents and I is sometimes not there, as in the past we have all crept around each other and been secretive. Even on occasions when there have been health problems in the family, I have automatically jumped to the worst case scenario, when the truth has never (thanks God) actually been that bad. The truth is easier to deal with than the constant insecurity of thinking that something is going on that you aren't aware of.

So sorry about your dad.

Thanks all for your compassion and wise words everyone. Policywonk what I want to do is deal with DS as gently as possible without falling into the trap of pretending nothing is wrong and he's going to survive. Yorkshire Rose, Pinkjenny and Cory, your recall of past memories strike such a resounding chord; you hear so much about the exclusion of children from the taboo subject of a loved one's mortality and I think you are absolutely right, it creates a void in people's understanding and acceptance which is clear causes mistrust and resentment. So I will have to be as courageous and open as I can.

Idrank: the idea of feeding the information through in more "digestible" chunks to DS sounds a good way forward. In a way that's what we're having to do ourselves as at the moment it's uncertain how long this will go on for. I,ll let you know`how it goes.

Mutha - well done, you are very brave and you will all come through this. Your DS is lucky to have such a caring mum.

I think feeding it through in small doses is a good idea.

Or you could be guided by his questions - give him exactly the information he asks for, no more, no less.

For what it's worth, my older DS was 5 when my mother died. He was fairly close to her, but he wasn't phased by her death at all - he was tremendously matter-of-fact about it. I ended up telling him the whole atheist shebang - dead and gone, body cremated, nothing remains of her, etc. - and he took it all in without any apparent disturbance. (Some other children, of course, might have found this approach very upsetting.)

Hi mutha.
Feel free to cat or post on here if you want to keep chatting.

I think doctors are generally vague when dealing with terminal cancer (and many other terminal illnesses) because it is almost impossible to predict what will happen when. My uncle was diagnosed with terminal bowel cancer over 18 months ago and given 12 months to live. A few weeks ago we were told he was near the end but he has rallied again. He won't have any more treatment now and we are looking at a short time still but it does show how difficult it is to give a clear picture.
The same sort of scenario happened with my grandad, we had a few phonecalls etc that turned out to be inaccurate.

My uncle has four young children by the way and the mac nurse has given the same advice, basically answer any questions factually but in an age appropriate manner and don't be afraid to be upset in front of your child either. It's good for them to know that it's ok to be sad/angry etc and that it's normal for adults to feel all the emotions that a child can feel if you see what i mean.

i lost my dad couple of years ago to cancer and my dc were very close to him,he was their male figure

please be honest with them explain that he is notgoing toget better but also make sure he realises not everyone that get sick dies.

Hi, my mum died from a brain tumour when my DS was nine months old. Clearly I didn't have to offer any explanation to him at the time but my nephew was four and very close to his nanny and aware that something was going on. His mum just kept it simple for her ie age appropraite saying 'nanny is going to live with the stars' which he accepted. He asked lots of questions which were answered simply and since mum died we have continued to talk about mum to my nephew. Although my DS was a baby and my DD, born after my mums death, have no memory of their nanny, I talk about her to them. (DS id now four and a half) and to my nephew, now eight. Children see things in such simple terms, not seeing the finality of such a loss (my nephew asked one Christmas 'does Father Christmas deliver presents in heaven? Will nanny have presents')
Heartbreaking to hear but just a question to the child.

Terminal illness is dreadful for all concerned but is sadly part of life. Take it slowly and gently but don't keep it from him.

I'm so sorry for your situation. I remember only too well the tramua of losing a beloved family member to this wretched disease. Hang in there, you'll come through. Sending my love xx

Thanks so much Phoenix and SVY for your replies.

I visited Dad today in the hospice and he's got so thin. I had not appreciated how bad his weight loss was as he was wearing a dressing gown - I haven't to date seen him in bedclothes - it was obviously too much effort for him to get dressed. He was really nauseuous as I think he's being filled chocca with uber strong meds and he probably didn't eat enough for breakfast. I will take DS1 to see him after school on Monday and I took DS2 today who is only 15 months and mercifully not requiring a debriefing. However something rather tragic about seeing DS2 tinkering with a Fisher price toy playing tinny tunes in the family room while Dad was trying to stay compus mentus. It's so shocking as he was working only 6 months ago. I have been trying to feed DS1 small nuggets of information about what cancer is .ie. lumps growing on your body that shouldn't be there. It's all a bit harrowing today ... probably getting to me. Anyway DS1 spoke to Dad on the phone today and they had a nice conversation. There is however something quite powerful about this experience and I do feel privileged to be having peaceful and ruminating one to one conversations with Dad at this time. Will let you know how it goes on Monday. Thanks Mumsnetters for coming through once again.

Mutha

Sorry your going through this. Does your son's school have a family worker who you could speak to.

I only ask because i lost my dad in January and dd1 (5yrs) were able to give me this number for advice. I found them very helpful and understanding.

Unfortunley we have just lost my grandad last weekend so we are now going through it again.

mutha

sorry you are going throughthis and i kno what you mean i was so shocked when saw how thin my dad was that and when i saw him cry i had to leave the room and pull myself together

but i to hadthose conversations with my dad though at time we did not now was terminal but iDidif you nowwhat I mean

But please allow yourslf some time as well , no matter how grown up we are , there still our dads