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Explaining progression to children

Doodles87

Registered User
Sep 4, 2018
49
Hey,

My dad has had dementia since before our children were born, they are now 4 and 7. My 4 year old has no awareness for it whatsoever, however my 7 year old is so good and so patient with dad I couldn’t be prouder. He is a sensitive sole at heart. For years dad has been forgetful, struggles to follow simple instructions and has of recent , been aggressive. My son takes it all in his stride, we do hide the wandering from him because he worries, other than when he turns up at our house multiple times a week!!! We are very lighthearted about it in front of the kids and I guess it’s just their‘normal’. The last couple of months dad has really declined, he’s more withdrawn, grumpy, confused, forgets I’m his daughter. Today Dad was really down saying he didn’t know where he should be or who he should be with etc. When my son over heard us talking about it earlier he was so concerned, the question is always ‘is he dying’. Of course I tell him everybody dies eventually but he seems really bothered. I just want to make sure I cause minimal upset and don’t want to cause any long term issues with death etc. Your advice or tips would be so welcome please.

I am struggling to hold back the tears when I see dad at the moment and the children can sense it.

thank you so much x
 

Canadian Joanne

Volunteer Moderator
Apr 8, 2005
16,503
66
Toronto, Canada
I think it's fair to say to him that although granddad is sick, he's not going to die soon. He sounds like a lovely and lovable little boy, very sensitive.
 

Lawson58

Registered User
Aug 1, 2014
2,165
Victoria, Australia
Your little boys sounds absolutely wonderful and I suspect that he is need of some reassurance at the moment.

Kids at that age can be quite insightful and apart from seeing his grandfather going downhill, he is probably picking up on your emotions. While you try and keep things light hearted, he could be getting mixed signals from what he is seeing in you.

My guess is that he is probably feeling a little scared because he doesn't understand what is happening.

I think your sensitive little boy needs a little honesty, gentle honesty because he knows something is going on. If it were me, I would try and find a quiet time and have a chat. He suspects his grandfather is dying, sooner than you are saying and he has no idea of how to deal with that.

A few well directed questions should tell you what he is thinking and that will tell you what he needs to know. Yes, grandfather is sick but he will be around for a while yet.

If he is given the opportunity to think things through now, it may make it easier for him to accept it when the time comes that he does lose his grandfather.

And yes, he is a boy to be proud of. Well done.
 

Whisperer

Registered User
Mar 27, 2017
147
Hampshire
Dear Doodles87

That is a very tough situation you find yourself in. You cannot explain Dementia to your son, anymore than I can to my siblings in their 50s.

Naturally you find dealing with your father upsetting as his illness progresses. I can walk into another room, pull myself together to carry on, not having to be concerned if my upset is being seen by anyone else. Your dad presents himself unannounced, possibly not at his best and you have to react in front of your children.

I think the suggestion to sit with your son and gently asking questions to see what he is thinking is a good one, although a hard thing to do. I need to be careful here. Well meaning relatives can make suggestions about how to care for our PWD, which you think may be well meaning but completely inappropriate or unworkable. This is different. A young child, clearly intelligent and sensitive, most likely with concerns about his grandad not yet fully expressed to you. Crucially most likely not even fully formed in his own thoughts. You might be surprised at the level of his understanding when you have this difficult conversation.

Clearly I can only go on your post but your son has adapted well to your dad’s illness. Please understand I do not mean that glibly. He cannot fully comprehend Dementia, but in their relationship he has adjusted and made allowances, understanding that relationship is different to others he has with other adults.

He sounds a lovely boy. In trying circumstances you are doing a very good job of navigating being a caring daughter and a loving mum.

However difficult the conversation might be I suggest better to hold it now than in the future when your dad’s condition worsens. Let your son ask the questions he no doubt has. Respond to his actual needs not what you might believe them to be. It might be an on going conversation over time. Good luck with that chat.