Telling my kids about Grandpa :(

[Flute mum]

Hi
This is my first post - but today it hit home like a hammer that my Dad has dementia, and I can't keep it from my kids anymore. My son is 10 and has mild autism, and today lost his patience with Dad and starting shouting at him that "he did know the football results, why wouldn't he tell him the score".. But Dad just couldn't remember...
It was heartbreaking, but I had to accept that the day had come.
For 2 years I had been able to tell people, that Dad wasn't too bad, as my kids hadn't noticed - but now they have, and I have to admit things are getting worse.
My Mum is amazing, and cares for Dad at home, but she is finding every day harder.
Sorry.... Just need to send a message somewhere knowing that someone may read this who may know who I feel, and knows what a big deal having to tell my kids about Grandpa has been today....

 

[CollegeGirl]

Welcome, Flute mum. You have found the right place for support, advice and ranting when necessary!

Children can be amazing at dealing with things like this. My daughter, when told at 11 aboit her nana's dementia, reacted very well. As she has got older and my mam's personality changed, she has found it harder, sadly but understandably.

We don't put any pressure on her to socialise with her nana. If she wants to escape to her bedroom, she can. If her nana is pleasant, all well and good, but the moment our daughter feels in any way uncomfortable, she knows she can escape.

Don't despair x

 

[Pennie]

Hi
This is my first post - but today it hit home like a hammer that my Dad has dementia, and I can't keep it from my kids anymore. My son is 10 and has mild autism, and today lost his patience with Dad and starting shouting at him that "he did know the football results, why wouldn't he tell him the score".. But Dad just couldn't remember...
It was heartbreaking, but I had to accept that the day had come.
For 2 years I had been able to tell people, that Dad wasn't too bad, as my kids hadn't noticed - but now they have, and I have to admit things are getting worse.
My Mum is amazing, and cares for Dad at home, but she is finding every day harder.
Sorry.... Just need to send a message somewhere knowing that someone may read this who may know who I feel, and knows what a big deal having to tell my kids about Grandpa has been today....

Oh dear, poor you, it's a hard one.

Do you think they need to know the actual diagnosis or would they accept that Grandpa "is a bit older now and getting more and more forgetful and not to worry about it too much" sort of thing?

Oh and welcome, this place is a godsend when the chips are down, everyone is so incredibly kind and also there's a wealth of experience amongst the regular posters.

Hope you find the way that suits you all best.

 

[annie h]

I agree with Pennie, I don't think you need to worry about them knowing about the actual diagnosis. And my experience was that my son was better at coping with Mum than I was. He just took her at face value and didn't worry about diagnosis, and wasn't constantly worrying about the future like I was. You'll find activities that they can do together - jigsaws, games perhaps. One aspect of dementia is that in some ways the sufferer becomes a little more "childlike". As things progress it's just a question of finding the right level of activity that they can both enjoy. Whilst she remained reasonably fit, my mother was able to put up with playing cricket or whatever in the garden for far longer than I or my partner could put up with it - she didn't get bored because she didn't realise how long she had been playing! It's natural as a parent to worry about the impact but if you look out for suitable opportunities I think you will become confident that it will be OK - in many ways having a child unfettered by all the usual prejudices about the disease and worries about the future can be really helpful!

 

[RobinH]

Explaining to children

Hi

I disagree to an extent with the others who say don't explain. I think kids can be very good, and if you explain that his short term memory has gone, they will understand. If needed, explain that he knows all about most of his life, but not his recent past. That aught to encourage them to talk to him about the period he remembers well, which is good for him and for them.

The reason I wouldn't put it down to old age is that kids are clever, and if you imply that it's just a thing that happens when you're older, they will immediately assume it will happen to you, and to them. That might scare them, and it's not true.

Just a thought - a 10 year old will be familiar with smartphones and computers. Just tell him your dad's memory chip is full, and he can't store anything else. Hopefully they will get that straight away.

 

[Florriep]

Hi and sorry you're having to face this. You'll know your son better than anyone and how much he can take on board. We've gone for a drip feed approach with my son (11). Over time he's come to appreciate grandma's limitations but we've never gone into great detail. Dementia is so unpredictable it is impossible to prepare yourself never mind a child for what might lie ahead, but I like the memory chip analogy. Hopefully there are other older people in his life who show that dementia doesn't affect all old people. Like others have said, grandma is happy to do things with him, but we allow him space and don't force them together - like all of us,sometimes he just wants to escape!

 

[sue38]

There is a factsheet on Explaining dementia to children, which you can find >>here<<.

 

[at wits end]

I found it worked well with my kids to tell them that Gran's memory is full. She can remember the old stuff cos it's wedged well in but there isnt room for the new stuff. It kind of falls out like in an overful filing cabinet .

 

[cragmaid]

One way with a smaller child would be to explain with the aid of a colander or seive, some sand and some pebbles.

Mix some sand and pebbles and put them in a seive and shake.......

The seive is the Memory or Brain
The sand and stones are thoughts and memories and some fall through the holes and some stay in......but no one can say which are which....keepers or losers.

 

[Flute mum]

Thank you

Thank you so much for your replies, you have no idea the difference you have made today...

Robin H: your description of grandpa's brain being like a memory chip was genius.... And today me and my son had a more rational conversation, liking the dementia to his iPod... We talked about how he got cross when his iPod was full when he wanted to put new stuff on it, and how this is how sometimes Grandpa feels - his memory is full, but he can't delete any of the old stuff, and this is why sometimes hie gets frustrated, because he wants to put new stuff in his memory - like my son wanting to put new stuff on his iPod, but can't...
Thank you - your time to reply has made an huge difference in our world today.

 

[sallyc]

My Grandad had Alzheimers and died on New Years Day. We had an amazing relationship and he moved 200 miles to live near us so that I could look after him. At the time he moved here, my girls were 6 and 2.

I was always just honest with them both. They are now almost 11 and just 7. They have never ceased to amaze me in their acceptance and understanding. Grandad was in a care home from September 2010 and they remained a big part of his life. They always had a choice over whether or not to see him as things got harder, but I never hid anything from them.

On Christmas Day, they hadn't seen him for a few weeks and he was in bed and never opening his eyes...they asked to see him, so I took them. He didn't recognise us for the last 8 months at all. The girls knew, and they understood.

I always explained that he had Alzheimers Disease, and that this left him confused and forgetful.

You'd be amazed at just how accepting children are if they understand.

I hope this hasn't upset you. The loss of my Grandad is still very raw for us all. I hope it helps xx

 

[Noorza]

I love the ideas given here. I have a slightly different perspective, I lost my baby niece and wanted to shield my other niece and nephew from the reality of it, naturally that was not my choice but the choice of their parents' to make. My niece and nephew's parents' were far wiser than I and took advice which initially I didn't understand, that despite their youth they should be allowed to say goodbye to their sister in the chapel of rest.

My son who has ASD and OCD thought he had killed the baby despite not even being in the same country when she died. I wanted to shield him from the funeral. The advice was to take him to the funeral and to show him that life went on after loss.

It is amazing how resilient and understanding children, even young children can be.

Later we threw ourselves into fundraising, the adults and the children all played their part, cake sales, donkey rides, pub quizzes, raffles, it didn't seem to matter what we called it, if the children were involved in fundraising to help others, it helped them.

As a result of those experiences I would be honest with children but see how I could focus their energies on gaining something positive from that. I can only say it was right for us but that it would not be the same for everyone.

As a parent of a child with OCD and ASD we talk openly about his condition I feel AD and dementia should also be talked about when it would not hurt the person with the condition. If it would hurt them, then I stay anonymous.

 

[zeeeb]

I tend to think that a child with austism will need to know the truth. They need to know that grandpa's brain isn't working like it used to and he can't remember things, it will be an ongoing thing for him to repeat himself and to ask the same questions over and over again because he just can't remember. And that we have to be patient with him because he is easily confused. Getting angry with him will only upset him because he knows he can't remember.

I have a 5 and 7 year old, and I've told the 7 year old about the alzheimers, she didn't ask much, but she's been told, so she can ask whenever she likes, and as things graduate, i'll tell her over again a few times and try and open up the conversation so i can answer any questions.

Mum also has parkinsons, so i've told her about the parkinsons, once i found out they were making fun of mum's shakes. that's alot easier to deal with because it's a physical thing, rather than a brain thing.

The 5 year old still seems oblivious and still seems to just act normal around mum, so i haven't gone there with her yet. But i'm sure some stage this year i'll have to talk to her about it as well.

I have a book called "Wilfrid Gordon Mcdonald Partridge" by Mem Fox which is quite good for young children, it's about a boy who tries to help an old lady recover her lost memories. It doesn't specify alzheimers or dementia, it just talks about her lost memories.

 

[NanLorac]

My 12th old Grand daughter knows the truth about her Papa but we have not said anything to the 6 and 3rd old.
Papa still plays with them and they have not noticed. We will explain to them when we need too.

Robin, the micro chip is a fantastic idea because it will make sense to children.

Sent from my GT-P5110 using Talking Point mobile app

 

[Neph]

It's such a hard thing to do, but I have to admit I used the drop feed way with my two when my dad was ill and my son (who was 12 at the time), who has dyspraxia, accepted it far better than I thought he would. My daughter (who was 10) too.

Be honest with them and let them ask questions, answer them honestly but not harshly.

Now mum is in end stage they are both prepared for her to go. I am sure there will be some tears but at least they are well prepared.

((hugs))