Polycystic Kidney Disease (PKD) Support Group

Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.

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Adult Child Won’t Discuss

librarylil
librarylil

Hi. Does anybody else have the experience of an adult child who won’t discuss kidney failure decisions?  As soon as I begin to discuss anything having to do with a transplant, my son (31) averts his eyes & doesn’t want to discuss it. I try to keep it light, as light as possible, but there are some decisions coming up for me fairly soon (I’m in stage 4), & I’d like to be able to talk about them with him. But I don’t know how to get past his inability to cope with it. Any ideas?  I’m divorced, live alone, so I’m not even considering dialysis, only transplant.  My sister has agreed to be tested.


Thanks. 

Chewitt
Chewitt
My son is 20 and I don’t discuss my own health with him. It’s on a need to know basis as I don’t want to worry him. I think they must reflect on what might be going to happen to them in the future, but would rather not do so. Can you discuss your decisions with other friends and family and just inform your son when he needs to know? I wouldn’t push any one to discuss these issues if they are not keen.
Chewitt
Chewitt
My son is 20 and I don’t discuss my own health with him. It’s on a need to know basis as I don’t want to worry him. I think they must reflect on what might be going to happen to them in the future, but would rather not do so. Can you discuss your decisions with other friends and family and just inform your son when he needs to know? I wouldn’t push any one to discuss these issues if they are not keen. Good luck with your sister’s testing.
librarylil
librarylil
Thank you!
BEAMS
BEAMS
I’ve been in his shoes and regretfully did the same thing. He, like I was, is probably terrified. I was scared because I knew the possibility that I’d have the disease and at the time I guess felt like if I distanced myself from it, that maybe it wouldn’t happen? I’m not sure but I was selfish for my actions. Now only 3 years since her passing and in stage 4 I feel alone in the world. Like I wish after every test result or infection or pain that I could talk to her about it. I wish now I knew more about what to expect or when I’m going through something to know “oh yea mom used to go through this”

Anyway, your post made me create the account to reply. I seen myself in your child’s shoes. I think he too could just be scared. For himself and the thought of losing his mother? I don’t know what to suggest to help other than force the conversation so he doesn’t have to regret not being apart of the process later down the road.

-Beams
Chewitt
Chewitt
Welcome to the group, BEAMS, and thank you for your reply. I will certainly give your suggestion some careful thought. I feel, though, that whatever I do, it will be wrong. It will either be wrong no now, or wrong later, so it’s a lose lose situation. None of this is easy. Look forward to hearing more from you.