Son's reaction to diagnosis - advice please

[Marnes77]

Hi everyone. Could do with some advice please.

My PALS' son (not my child) has known about his illness for the last several months. He is 18. Very smart. Charming. Outgoing. Fun. Active and busy life. Etc.

He does not seem to be engaging with his dad on this at all, despite his illness and need of greater help being increasingly obvious. Doesn't offer any help. Doesn't ask how he is. Just out having fun as if none of this is happening.

This is starting to hurt my PALs. He is an exceptionally kind and loving father.

I don't know how to advise. Perhaps this is normal for a young male. Perhaps denial. Perhaps he just can't go there. I really don't know and don't feel qualified to speculate too much.

It's all so delicate.

Just wondering if anyone has any experience and advice on this please.

 

[lgelb]

18-year-old males are often pretty good at denial, for sure. He may also think if he's around, he will be pressed into caregiving tasks he's not ready for, or prefers to think he's not (another form of denial).

If I were his dad, I would sit him down for a conversation around how this must be hard while also owning his hurt and wanting to stay connected, that he will always be his son first, not his caregiver, that ALS isn't something that our behavior creates, and we can all only do our best and he would appreciate help. Like any other behavior that we try to reinforce positively, I would induce him to give a little help, thank him lavishly, etc.

But if that isn't a convo they can have, for whatever reason, I would try to find a third-party that his son trusts, to open the door to it and to be or find a person that the son can blow off steam with.

 

[Marnes77]

Thank you. That all makes sense. In an overall situation I can make no sense of.

I hate this disease so much.

 

[kljack16]

Hi - I hope your PALS was able to have that conversation with his son and that it helped.

I will say, an 18 year old of any generation (male or female) tends towards self-obsessed and denial. He just wants to be a kid and an adult and live his life. I’m sure it’s more than overwhelming for him to see his father losing more and more capabilities everyday. Add to all of that he went through all the COVID isolation that has had untold impacts on kids.

My husband’s best friends either couldn’t deal or couldn’t be bothered, and it broke my husband’s heart, over and over, and they never reconciled.

I would strongly encourage you to have your PALS and his son have that conversation, as suggested, and/or get the son into counseling or into a forum like this. He will never forgive himself if he doesn’t work this out with his dad before he’s no longer able to.

Just my thoughts. I wish you and your PALS all the best.

 

[MupstateNY]

my 28yo had his head firmly in the sand. he's living and working in europe. right now, he is in his 3rd visit since my dx in nov, '22. this time, someone from compass. care came to see us on his first full day. she had a golden touch, and offered SEVERAL times that if he ever had any questions of comments, she will be available. he did not run away as i feared he would.

at the end of her visit, i asked if he was surprised how much i had progressed since his last visit, and after thinking it over, he said, smiling a bit, "i'm glad it's not worse." progress, right?

a wk later, while we were outside, i told him i had made myself dnr and would prob. die with morphine drops, not from heart failure, or i might possibly die from an aspiration pneum. he seemed reassured at the lack of drama and asked some good questions.

maybe show lots of subtle, quiet solidarity with your partner, and see if things improve on their own with your stepson in a couple months.