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willsandco
21st October 2014, 20:57
We weren't going to have grandson (13) this Christmas. My daughter is divorced and it was ex son in laws turn to have him. Daughter was spending Christmas with us. Now son in law has rung her to say that, given the circumstances with my bulbar onset MND, perhaps it would be a good idea if grandson spent Christmas Eve and Christmas morning with us to open his presents, as it may be the last one I have, or the last one where I will be fit enough to cause my usual mischief and mayhem!. I understand completely where is coming from. It isn't that this situation hasn't occurred to me but I am firmly of the opinion that the thought of dying isn't particularly a helpful one to me, doesn't seem to float my boat somehow! So I just crack on and spend my days being as happy as I can be - and I am generally very happy! But now, because of this conversation with her ex, my daughter has sat young grandson down and told him the score. I am exceptionally close to this little lad. He spent most of his young life living with us and he gave me away this year when I got remarried. I am just so upset that she has told him. He knows I have MND but I thought we could just get through this year on a sort of "drip feed" and if I got worse and things got really serious, then she could tell him. Perhaps I am wrong. Perhaps we should have told him from the start! He is 180 miles away and he will be upset and I am here and broken hearted. A fair few of you have got chidren and grandchildren. What do you all think?

Alig2014
21st October 2014, 21:23
I would imagine with all the publicity from the ice bucket challenge he may probably have some idea. With internet at their fingertips they can find out everything they need to know.

I know you say you want to carry on as normal as possible but maybe it is something that he needs if you are a big part of his life.

Alison x

Terry
21st October 2014, 21:35
Children are incredibly resilient and I am sure that if you can enjoy Christmas he will as well. Don't look at anything as being the last time, just live today.

There is an information sheet that might be of some use:-

http://www.mndassociation.org/Resources/MNDA/Life%20with%20MND/Information%20Sheet%2024%20-%20Communicating%20about%20MND%20to%20children.pdf

Love Terry

willsandco
21st October 2014, 21:55
Thanks, both of you. I am a bit more sorted out now. The new Christmas arrangements and the reason for the change came in on an email. The wording was a bit straightforward to be honest, although it was never meant to upset me, I know that! However, grandson has sent me a photo of himself taken tonight with a thumbs up! I cant recall being this upset for ages. Just touched a raw nerve, I suppose. Made me look at the thing right in the face perhaps! I try not to think too much about leaving the grandchildren and not seeing them grow up (Oh gosh, I am off in tears again now!) Anyway, thanks - and I will have a look at the information sheet, Terry!

Terry
21st October 2014, 22:25
I have a few tears as well.

We do need to "Man up", don't we.

Not sure info sheet will be much use, love Terry

Sueb
21st October 2014, 22:29
It is hard to know what to tell the Grandchildren. We have spoken to our 4 oldest Grandchildren (17,11,10 & 9) and explained to them about MND but not all the details. They know their grandad will get worse and die from this disease. We told them not to look on the internet,but if they have any questions they are to ask. One grandson has a friend in his class at school whose grandad died from MND and he has spoken with him, and our granddaughters had a talk at school about MND because someone's dad had it and he came into school, so they have some idea about the disease. We decided that we wanted them to know why Steve needs hep with things and they get used to seeing the disease progress and also to spend valuable time with him. Also we didn't want them to find out by overhearing anybody talking. After the initial shock they been brilliant and help wherever they can.
Enjoy Christmas and make lots of memories
Sue

Nettie B
21st October 2014, 22:53
Dear Joycie.

Given how close you are to your grandson perhaps you should have as many Christmases with him as possible. You sound like a lovely cheerful, happy person and as you are so close he needs to have lots of memories of you if he can.

Personally, I think it's better to warn him of what COULD happen. At 13, he may actually have been upset NOT to have been told the truth.

Trevor is an "honorary" Grand Father to my daughters' children.They have told the children as much as they feel they can handle and the oldest is only ten, the youngest only 6. Whenever they see Trevor they see such changes that we feel they need to understand as much as possible what is going on so they will hopefully be able to accept the inevitable without too much pain. We just hope we'll see them all many more times yet, despite the fact that they are 110 and 200 miles away.

Go for it Joycie and have a whale of a time for as long as you can without hiding the truth from this "young man".

XX Annette

willsandco
21st October 2014, 23:04
yes thanks everyone. I think it would be easier for us all if they were nearer and he could see the gradual deterioration. Still, we see him next week for half term and I will write something down for him and sit and have a two way communication with him. He and I always do have tremendous fun together and Christmas will be no change. But I have been inordinately upset about this tonight - whether it was because it was put in writing that this might be the last Christmas, Something triggered me off and it is unusual for me really. Poor Peter has a dreadful time with me sobbing and crying! Anyway, daughter has rung up, we have spoken with grandson, and we have mentioned nothing about my being upset! Best left, eh? So, we roll on and tomorrow is another day, isn't it? Hugs to all Joycie xx

Jobowray
21st October 2014, 23:20
Hi joycie I recently told our 7 year old daughter the truth about her dads mnd and her reaction was " mum, I already guessed" her reaction to this has been lots of attention for dad, stroking his arm and just wanting to be near him. We both felt it was best to tell her the truth so that her imagination didn't run wild. Children are amazingly resilient and she certainly surprised me.
Jo xx

Springtime
21st October 2014, 23:20
Hi Joycie,
I am sorry you have been feeling sad. Our Grandchildren melt our hearts dont they, in a way that can never be explained until we experience becoming Grandparents.
Like Alison said The Ice Bucket challenge has made a lot of people especially children a lot more aware of MND. My Grandaughter is 13yrs and like your Grandson, has spent much of her young life with myself and her Grandad and she has always been "Grandads Girl".
She did the Ice bucket challenge before her grandad had been diagnosed and so, when we told her what was wrong with Grandad she understood a little of it. She was heartbroken at first, but I don't regret telling her as now she has come to terms with it and is telling her friends. I have suggested to her that we could turn this into a positive and she could speak about MND in schools to children of her age group. She is now researching as much as she can to try and understand as much as she can to make this idea happen.

A grandma hug from me to you xxx

Ellie
22nd October 2014, 15:27
Hi Joycie,
I get why you’re so upset; it’s relatively easy to cope with the day-to-day consequences of having MND, but when it comes to thinking about those we leave behind, especially children, it’s a different ball game entirely! If everyone was forced to confront their own mortality, they would have the same thoughts, but most people have the luxury of not having to do so. My heart goes out to you Joycie.
It’s probably for the best that the issue has been raised with your grandson and without you being present. It gave him the chance to ask his mum questions about MND and you, and you weren’t distracting or distressing him by being upset in front of him. (I don’t mean to offend you! )
My eldest child is 13, she was 5 when I was diagnosed, so has grown up with my MND. As others have said; children are resilient, intuitive, adaptable and don’t like to be kept in the dark. The ex s-i-l had good intentions and yes, it’s very difficult to get the nuances of the spoken word across in an email. I hope you have much more fun times with your grandson ahead of you.
Love, Ellie.

willsandco
22nd October 2014, 15:51
Ellie, he knew I had MND, has done the icebucket challenge, we all talk about it with him. When I see him, which is about every 6 weeks, he can see the deterioration, not in my looks but in my voice, which has almost disappeared now, and certainly my mobility when I struggle up the stairs. But I don't think he ever knew that I might not see a Christmas after this one, and it is very possible I wont. That is what I don't think he needed to know. I just wanted things to be as normal as they could be but it now has this added dimension in it for everyone! Never mind, what is done is done. I am OK today about it all - and yes, we will have tremendous fun at Christmas, like we always do! x Thanks for your comments, much appreciated! joycie

Jan
22nd October 2014, 17:42
I have my little granddaughter (shes 2) every Thursday whilst her mum works, I look at her and think how can I leave you? big hugs to you Joycie ((())), this blessed illness does not get any easier does it!

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