How to prepare adult young DC’s that their dad might die?

[Lovemusic82]

2 DD’s age 20 and 18, both with ASD (relevant), eldest is at uni and struggling with dead lines at the moment, youngest in SEN provision (more severely autistic). There dad is pretty unwell, I won’t put too much detail but his condition is rare and we don’t really know the outcome/how long he has but he won’t get better and will progressively get worse, it’s a brain condition so it could mean him having a big stroke or developing memory loss/brain damage. He is in his mid 50’s. We are divorced and he lives near by.

Dd1 knows her dad is unwell but doesn’t know how serious it is, I am waiting for her to hand in her coursework/essays at uni before telling her as she’s really stressed and behind with her work due to ASD/ADHD struggles. She plans on staying at uni until July but I want to encourage her to come home to spend some time with her dad but I’m not sure she will want too.

Dd2 knows what’s going in but I’m not sure how much she understands or how she will deal with it all. She has been spending time with her Dad and we have been trying to keep her routine the same but I’m worried about how long we can continue and how long it will be safe for her to go over there as she needs a lot of care.

How do I prepare them for the fact their dad could potentially die at any time or the fact he could change dramatically over the coming months/year to the point they may not recognise him?

You need to ensure you use clear language not euphemisms, stick your facts. It's common for dc who do have capacity to understand to still try and ignore bad news so you need to be prepared to talk about it a lot, really clearly.really sorry for this for you and that o can't offer more information

Thank you. It’s been hard because ex has been pretty vague, obviously because we are no longer married he doesn’t have to tell me everything but it seems what ever condition he has is quite rare and even the doctors don’t know exactly how it will progress and how fast. I have sold dd1 that he is at risk of a stroke and that he can’t be given the meds to stop it (he can’t have blood thinners or the treatment to break down a blood clot) but that’s all I have told her. At the time I thought that his condition could improve and his risk of stroke could be reduced by life style changes but that doesn’t seem to be the case now. Dd1 is likely to shut down and refuse to come home and face it but I’m worried she will regret not spending time with him before he gets more unwell.

I don’t think you can control for regret. I mean no one gets as much time as they need with a dying parent. Most people are going to have some regrets.

Be honest with the children in an age/conceptually appropriate way. Repeat that no one knows time/condition. Try to foster visits but know that both your children and the ex dh may not tolerate them well.

Thank you. I’m probably overthinking things as I’m on the spectrum myself. They are not that close to their dad, he’s more a part of routine for dd2, she spends one day a week with him, dd1 doesn’t see him as often but they do have a close (ish) bind as they are very similar people. In a way it might be better for Dd1 not to be around him once he becomes more ill, I’m not sure she would be able to mentally deal with it which is why I want her to spend time with him before this happens but at the end of the day she’s an adult and it’s her choice how she deals with the situation.

Based on your update, it's possible that my DH shares a similar diagnosis. I'm sorry, you're in a tough place.

DH is only giving info on a need to know basis. I would prefer to give the family a bit more detail. They are a little older though. What they do know is that he's on new medication and that it makes him very tired. I'll be honest if anyone asks questions, but nobody really has.

I would recommend simply encouraging them to maintain their relationship with him (how is yours with him?) and maintaining your own good relationships with them. If he does become very unwell or pass away suddenly, be clear that it was his wish not to share his diagnosis, and that is his right.

Wishing you all the best!

Sorry just realised they are aware of his diagnosis. In that case I would just work on being there for them and keeping communication lines open 💐

Eldest does know about his condition but thinks he will get better, she doesn’t know that there’s no chance he will.