How to tell the grandkids

[krnNdug]

I was diagnosed in Feb. and have had such an outpouring of love and concern. People are flying out walk with me in the local walk next month. My wife's fear is that when our granddaughters get there and see some pALS that are farther along with vents and feeding tubes.

They know Papa has been disabled with a bad back all their lives (9,7 & 5). They know there are a lot of people loving and supporting us and having a big party. They have seen the Ice Bucket Challenge but don't know I have it or what it is. How would you guys tell them and how much? They are very smart but also very sensitive.

My son-in-law is a pastor and I know he can do a great job, but I wanted to hear from our community how we can "break" the news and encourage them.

Thanks in advance,
Doug

 

[Atsugi]

At that age, I would keep it very simple: Grandpa's got a bad back, and leave it at that. They don't need to know it's terminal. They don't need to know about paralysis or the future.

As to the walk "these are some sick people we're helping" or " these are our friends" is plenty. They don't need to know you have the same disease.

 

[Vincent]

Just come right out tell them. What you have is a very teachable moment. The way this is handled could either have a positive or negative influence on how the grand kids deal with death for the rest of their lives.The best way of doing this is with as much honesty as possible.
Vincent

 

[krnNdug]

Thanks. I know we will let the parents lead it and I will share your views. Both are good.

 

[skipper66]

My opinion is the same as Atsugi. Keep it simple. Absolutely, don't tell them it is a terminal illness at that young of age. It would absolutely terrify them. Yes, they need to know about death but not so bluntly at such a young age. This is a very delicate matter and you must go very slow in how you approach it. But, do try to answer any questions they have with honesty.

 

[gooseberry]

What I told my 12 yr old was his dads nerves werent talking to his muscles anymore so it made it hard for him to do things. He asked if they would make up an dstop fighting...I told him no they wouldnt work together again.

 

[pecas]

I read up on what to tell kids at different ages, in preparation for telling my very bright 12 yo. Everything said tell them the basics of the disease, but don't mention death right off, let them lead the conversation until they move it in that direction. She was sad about the future degeneration. A couple of weeks later, I asked her if she'd googled "ALS" and she said yes, and a few tears ran down her face. I though, OK, she knows the statistics now. Well, a couple of weeks after that, she was eavesdropping on a conversation between me and my uncle and heard the talk of death. She had NO idea, and completely lost it.

So now my regret is that we didn't mention it pretty early on. I know we could have had an easier conversation about it than her hearing it secondhand. I guess my point is that I second the complete honesty strategy.

 

[gooseberry]

Pecas, we keep having the conversation. As progression happens, as the disease causes physical changes, we are very honest. My son has now asked if his dad is going to die from this disease and we have told him yes, most likely. He has had a few months and some counseling to help him work through it. While I wish we never had to have the conversation, I have been very honest in what I tell him. He sees his father struggle to breath, move, not drive anymore, etc. He is well aware of all the changes happening and asks many questions.

 

[Santa joe]

I left that up to our sons to tell our grandchildren. I don't know what was said but they knew that one day their Papa would not be here. When he passed away, I took them aside and told them that their Papa would always be in their hearts and to remember special moments they had with him.

Debbie

 

[MaxEidswick]

>When he passed away, I took them aside and told them that their Papa would always be in their hearts and to remember special moments they had with him.

 

[GregK]

> I left that up to our sons to tell our grandchildren.

2nd that.
3 of my 5 children have children. It was hard enough when we told our children, but they are better equipped to tell theirs...

 

[krnNdug]

The Walk is in a month and our daughter wants to go but isn't sure. I told her we love them regardless and fully understand if they don't make it. They could wear my team shirts and walk in their neighborhood. Of course I want them there but want them to be comfortable. They will find out when they need to.