Children and death

Public Archive
1

I don’t know if this will help any of you but I want to share my experience.
On live chat this week mum’s were talking about problems young children were having dealing with the effects of this awful disease.

My daughter was almost two and she was helping her daddy set up the bar, he used to enjoy a morning cup of tea with our two cleaners. He had just put the till drawer in and he fell to the floor. Donna-Marie ran to get Pat and said ‘daddy has fallen over’ he was out cold. We called an ambulance, I rang for extra staff and we set off for the hospital.

After what seemed hours of tests and checks a Dr said it was not looking good and we needed a scan. By 9pm they had the results it was a very large tumour in the stomach but he had lost lots of blood so needed a transfusion. A few days later an 8 hour operation to remove stomach gullet and windpipe. Poor Donald was shrinking in front of me and his life was ebbing away.
I had a teenage daughter, a baby and a very busy pub, what a couple of weeks earlier had looked like an enviable life was now all falling apart. My husband made a good but slow recovery from the op, D-M was like a little nurse looking after her daddy while I was busy down stairs. Very slowly we got back to a new normal we were honest with our children and told them our time together was very limited.

Because we lived and worked together we were never apart and did everything together, each time we went to the hospital we were scared the news would not be good. We were just coming up to the two year anniversary and Donald had started being sick every morning so we knew the cancer was back. We shared our last Christmas knowing time was slipping away. Donna-Marie
would ask questions like ‘are you going to heaven soon’ My heart would break. We had always said if a child can ask the question they deserve a truthful answer but was this the right way to deal with the loss of a parent?

Donna-Marie was attending prep school and was about to celebrate her fourth birthday. We decided to give a big party we booked a ventriloquest (spelling?) It was a magical occasion, as I put her to bed she said she knew it was daddy’s last party and hoped he had enjoyed it. He said it was the best party he had ever been to.

As his condition worsened D-M asked to have a bed in our room she wanted to keep an eye on him while I was downstairs working. As I went to work each night they went to bed to read together I had the baby alarm on so I could check on them while I was downstairs.
Macmillan said a nurse could come and sit 9pm till midnight. It was not the usual way but it worked so well for us I am still very grateful. Monday night and our nurse had to stay over at a conference and she was having trouble getting cover. I said we will be fine.
I put them both to bed and D-M said ‘the angels are coming tonight for daddy’ He told her he didn’t think so as he was feeling fine.
I kept popping up the stairs and the staff were listening to the monitor. I closed up, cashed up and was having a cup of tea, they were both fast asleep a noticed a strange noise a bit like a duck. I had never heard of the death rattle so had no idea.

He woke and needed to go on the commode so my eldest daughter helped him out of bed and she left the room. He just looked up and said 'I love you and th…
D-M lifted her head from the pillow and said ‘I told you they were coming daddy is better now’
I shouted my eldest and she took D-M into her room and I rang the doctor.
Donna- Marie attended the funeral and she picked her favourite hymn.
We kept his memory alive and talked about him all the time.

Nearly three years ago when D-M married as Ian I walked her down the isle she said. ‘If I could have dad back for one hour this would be the one.’
I told her he is still with you has never left you he is in your heart, so he is here.
I was so proud.

Please I don’t want to offend any of you with children just wanted to share.
Even though she is 27 and has already lost one parent I know when she loses me she will be raw with pain again, but I know she will carry on and have good life(I hope) and I will be in her heart.

Love Debsxxx

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oh debbs this is so honest of you to write about this like you do ,i too believe kiddies have the right to know when things arnt goood my own kids are adults now but the grandkids all know about my illness and have been told i may not be here to seee them all up and grown ,when my own mother died i was only a small baby ,i didnt even have a photo untill quite recently (i was brought up in a childrens home ) i would have loved to know what she looked like etc .i think the age of the children dosnt matter they are still losing a much loved parent and i do think they understand more than we give them credit for .do hope your treatment is going ok for you and look forward to the next meet up .take care lynn xxx

3

I was one of the mums on live chat this week as I have been worrying a lot as recently my 8 yr old has been reacting quite emotionally and at times violently to me and others. Trying to get support and counselling for him is a constant upward battle
I just want to say Debs thanks so much for posting this…it has helped me more than I can currently find the words to say.

xx Jools

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Hi Debs

I have been quite unwell for the last 2 weeks and spent about 8 days in bed. It is only since Monday, when I rose from my sickbed, that I could notice my boys’ behaviour and see the difference in it.
One child has been very loving and friendly since i got better, another has just been happier and the third has been nicer to me.

I am warbling a bit but I actually came on to say thank you for that account you gave. It was so interesting and helpful to those of us who are parents.

You have had some hard times in your life, to say the least, but you are always ready to help anyone else online. I appreciate your replies, as I am sure others do.

Ena x

5

Debs I am very grateful for your account - poignant and beautifully written. Would write more but have tried to chop off finger tonight (don’t ask) so will have to save it for another time.

Thank you,

Jenny
xx

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I worry about how our honesty about my forthcoming death will be on our children but I am sure it is the right thing to do.
We are able to have conversations about it which can be funny and poignant but at least we are all communicating.
My children, who were 7 and 4, when their nearly 4 yr old cousin died from liver cancer, 7 months before my primary diagnosis, coped better as they knew the truth about their cousin than the other cousins who were ‘protected’ from the truth. I think knowing the truth within their age understanding is correct.
Sourcing help for our children is so patchy. I don’t live that far from Jools but my children can access much more help emotionally than she can and that is so unfair as all children are just as needy in this situation.
What an unfair world.
Jenny - what have you been up to??? Tell all!!

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Sent you a pm, Kate x

8

A close friend died of bc a few years ago. She had 2 children, 6 and 8 years old. They had known for a couple of years Mummy was not going to get better.
When my friend died both children went to the funeral. And the eldest had gone to see Mummy after she’d died at the hospice and had laid some drawings she’d done for her around the body.
A couple of weeks after the funeral I saw the eldest child with a friend, they were laughing and skipping along the pavement. I know my friend would have been so proud of her children, how they’ve coped and lived life to the full since her death. Our local hospice here has lots of help available for children and their remaining parents, if families want to access help it is there.
x

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Hi Debs,
What a moving account, and good on you and your girls for coping with such strength and dignity.
I agree that children should be told the truth, according to what their age allows them to understand. There is nothing worse than being kept in the dark.
All the best,
Dee x

10

Dee, I don’t think it is always that straightforward. My kids are 7 & 9. and were 4 & 6 when I was diagnosed. They were too young to know the real story then and I have been very well for nearly 4 years since then. Is it right that they should know I am dying, while I seem OK to them? I want a normal childhood for them for as long as poss. I don’t see the advantage - at present - in being totally honest about the situation. I will certainly address the issues of my mortality, when I think it is right for them. They do know I am ill with cancer and they know death is a part of the equation. Like adults, all children are different and require sensitive and caring handling. My son is already very sensitive about my health.

And as Belinda described, I have also seen the children of a friend (met though this board, who died last year) carrying on in normal girlish fashion. I know she will show another face in private, but she is gettng through, and growing up, and I know her mum would be proud.

I haven’t answered this very well, but I don’t think I am ‘keeping them in the dark’. I am just trying to mother them carefully and sensitively. As I said on another post somewhere, I lost a brother when I was young (about my sons age) so I am trying to see things through a childs eyes too.

Jenny
xx

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Hi Jenny,
Sorry to hear you lost a brother when you were young. Obviously, my message did not come across as I intended. As each child is their own unique being, enough information has be given according to how much they can deal with and their sensitivity and age. They can see that something is wrong, so even though your kids were really young when you were initially dx (I am really glad that 4 years down the line you are feeling good - fingers crossed for you), you must have had to give them reassurance of the kind they could cope with. My son was 11 when I was dx, so I felt I explained enough to him as his mind could absorb and according to the questions he was asking. He too is very sensitive and Jenny I totally agree with you, that as a parent, you want to shield them from as much hurt as possible, and shower them with all the love we can.
All the best with your young ones.
Dee xx

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All the best with yours too, Dee. It just isn’t easy, is it?

Jenny
x

13

I think Jenny is right in that it is not as straightforward. I am trying to control how and when I tell my young children. For my own situation the problem is two-fold. Firstly, my daughter died aged 4 from cancer, I was dx 3 months later whilst 30 weeks pregnant. Therefore, I don’t want my children to know about my illness yet (primary at this stage) as I do not want to burden them with the worry that Mummy may die too from an illness that their sister had. Secondly, I have no outside control, for example, my neighbour was trying to explain to her son about her own father’s death from cancer and told her son about me. What she hadn’t realized was that I hadn’t told my own children about me!!

There is also the issue of the Race for Life which a lot of mums at my child’s school are doing - with the very best of intentions and good on them - some of them are doing it with their children and will have explained the reason for doing the race. I worry that it may inadvertently come out about my illness in circumstances like they did with my neighbour.

So, it is difficult and complicated and for my children I am just trying to do the best I can for them at the present time. A phrase I constantly use is ‘cross that bridge when I come to it’ but I just hope that it will be me telling my children at a time and place that I think is appropriate for them and me and not from the outside or the subject of gossip. Love xxxx

14

Hi All

Been reading these posts over and over and not really sure what to say or where to start.

My children are 5 and 2, and although my 5 year old knows that mummy goes to hospital every 3 weeks and has other appointments too, she does not know what is wrong with me or what the consequences will be. I do not know if I should tell her or when, or what I should really say. I dont want to upset or worry her unless i really need to.

My little boy is only 2, so he is too young to know really what is happening.

It is good to hear people posting saying that they know of children whose parents have died, and that they still grow up balanced and carefree (for want of a better word), but I still panic and worry about how my husband will cope looking after them both, how my daughter will cope, as she is very sensitive and both my children always want mummy when ill, sad or hurt and in the night too really. I am just so freaked out about wot will happen, although I do know deep down that life will go on for them, but I want them to remember me, and not forget who I am. So sad i think, and I hate having to go through this.

Why was I given my beautiful children, only for my life to be cut short at some point, not letting me watch them grow up into adults etc.

Sorry i am rambling now.

Love
Dawn
xx

15

I know children of two do know what is happening, I certainly did when my mother was ill when I was a child. You pick up on atmospheres. I think I would have been better off if I had had it explained to me.

I have had a deep suspicion of my parents, authority, and doctors ever since.

Mole

16

how do you explain to a young child that you are going to die before they grow up, but you don’t know when, when life for them is pretty normal? i think about whether I should be more open with my 4 year old all the time- at the moment he knows i am ill, and won’t get better, and that i won’t be going back to work, but has not asked for any more information. I dread the day he asks what actually is wrong with me, but hope i can be honest with him. At the moment I am glad that he does not know. Perhaps that is selfish of me, but i do not want him to carry with him the knowledge that i will not always be here until he needs to.

nicky

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My daughter is now an adult and earlier in this thread I posted about a late friend’s children and how well they’ve coped. I think, while still in shock, she had told them her prognosis straight away.
She was told of her secondaries (a couple of weeks after her primary diagnosis) over the phone when she was alone in the house and was about to go and collect the children from school, nursery. I think if my daughter was much younger I wouldn’t tell her too much until I’d used up most of my treatment options or was very poorly with further progression. I do think young children probably pick up something is wrong when the hospital is part of their Mum’s life and I think, in a way, this gives them some time to take in what’s happening. Six months often seems a lifetime away to a young child.
Take Care Everyone…x.

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A child of two does not have a concept of death, I am pretty sure of that, if I had a very young child I dont think I would tell them 100% until things were pretty far advanced as belinda said. I think we have to be honest, but at what point does being honest meet our own needs- to get it out in the open and just have the awful job done of making them understand?

Belinda, I am constantly shocked how oncologists tell people this news, I go to a private hospital which prides itself on the care for patients and there is no counselling, no private rooms, no mac support, nothing.

Anyway just rambling here, I think about this all the time as my son does not understand what is happening due to his disabilities and it
just breaks my heart.

Cathyx

19

Hi,

My mum died of breast cancer when i was 4 nearly 5, i remeber everything, i remeber her being really poorly, i aso remember her being really well. Im 23 now and was dx @ 22, still hopefully no cancer has returned.

I had a really good up bringing by my dad, he remarried and have a wonderful step mum.

My brother struggled through his teens as he was nearly 10 when she died. My dad made sure that we new that she would be joining our nan’s in heaven, and when the day arrived that she died, he broke it to us in such a strong couragous, but gentle way it still isnt a horrific memory…at the time i new that it wasnt right, and i new everybody was sad and i can remember that, but it wasnt horrific!!

I can only hope and pray that my cancer wont return so my kids dont have to lose thier mum, but if it does, ill be sure to do what my dad did. I never look back at my mums memory and cry, i smile. Yes i do wish that she was here, she could have given me lots of advise about things growing up, babies and the dreaded cancer, but i am happy that she was there at the beginning of my life and i will never ever forget her. Its suprising what a 4 year old can remember too when they have to!
It makes me sa though when i think what she must have been going through and she alsways put on a brave happy face.

Emily xx

20

Have been reading this thread for the last few days and wondering whether to post or not as my children are all “grown up”. But I do work with preschool children.

You are right, I think, Cathy, about 2 year olds not having a proper concept of death - the majority thankfully will not have had direct experience of it. It could be explained to them in terms of looking at other things that die (flowers, trees, animals) but that might still be hard for them to link with their mother and what they see her experiencing. Added to that, I am concerned about what they would see as the timespan. Time is a really complicated concept and very hard for young children to understand - that’s why for so long they confuse next week, next year, tomorrow, yesterday etc etc. I would fear that the uncertainty about “when Mummy was going to die” would be extremely upsetting and unsettling for them, and I’m not sure what purpose it would serve until the later stages of the disease.

I think you are also right though, Mole, when you say that children of 2 are aware of something happening around them. THink if my children were still young, I would be doing what you sound to be doing India1. Think it is a matter of answering the questions a young child is asking at this particular moment in time(either actually verbally asking or indicating they are asking in their heads as it were) but not answering the questions they are not yet asking or thinking of - young children live very much in the here and now. In speech therapy, we talk a lot about “following a child’s lead” in communication. This seems to me to be the best approach for this situation as well.

So I would be explaining what they could see and are asking about - that mummy needs to go to hospital to get special medicine to stop her getting very ill (or more ill). If appropriate, talking about being worried the medicine is not working properly. And then talking about the medicine actually not working etc and needing new medicine, until the time comes when there is no more new medicine. That is the point I think I would then talk about death unless they had already asked about it earlier. Keeping it fairly simple and matter of fact and at a level that the child can understand. I think it is also important to say it is a special/different medicine that mummy has, so that it is in some way distinguished from the medicine the child takes - they don’t need to worry about whether their medicine when they are ill is going to work or not.

Sorry - a long post. I am very grateful though that my children are older and do understand what is going on (even if one at least is probably in total denial). Having young children and dealing with this sh*t disease, must be incredibly hard.

Kay x