Mom to Adult CFer

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anonymous

New member
Hi everyone!
I have a boy who is 22 w/cf & newly diagnosed with CFRD. He does not do his treatments the proper way, nor does he do his meds the correct way or times he is supposed to. He won't panic until the day he has clinic and then he says 'DO YOU THINK THEY ADMIT ME" Well, lets see with PFT's in the low 40's YEAH I think they will. My problem is he takes no responsiblity for his CF/CFRD. And I have just about had it with his lack of responsibliity. Any suggestions on how I as a parent should handle this? All suggestions welcomed.
Thank you.
 
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AbsintheSorrow

New member
My best advice is going to be pretty useless and not helpful. He's an adult, as you know. And he has to make his own mistakes. No one can force him to do his meds or therapies. You can always comment when he says "Do you think they'll admit me?" before a clinic appointment, "Well if you did your meds properly, you'd be safe this time." Or something of the like. But actually forcing or coercing him to do his meds and therapies is damn near impossible, if not entirely, and will likely just piss him off.

My only other suggestion would be... does he have a girlfriend/fiancee/wife? If I'm too lazy to do my meds, and Mike knows about it, he makes me feel awful and I end up doing them. He doesn't do it on purpose, but my parents are a lot less likely to coerce me into doing my meds than Mike is. The minute I tell him I don't want to, I know I'll end up doing it anyway, because he cares. So my only other piece of advice would be... if he does have a significant other, make sure she knows about the CF and the stuff he should be doing, and see if she can help him to do them.

Parents never want to hear this, but adult kids are far more likely to listen to a spouse than their parents about meds and stuff.
 
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ButtonNO1

New member
HIYA I AM 20 AND HAVE CF AND AM BEING TESTED FOR CFRD I HAVE TO ADMIT I WAS ALOT LIKE YOUR SON BUT I HAVE COME TO REALISE HOW IMPORTANT IT IS TO DO ALL MY MEDS AND MY PHYSIO AS IT CAN HELP YOU TO STAY HEALTHY LONGER BUT IF HE DOESNT TAKE HIS MEDS HE WILL GET VERY ILL AND THEN THEY WILL ADMIT HIM . BEST WISHES FROM JO
 
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anonymous

New member
I completely agree with Emily. I am an almost 22 year old male with CF and untreated CFRD. I saw a lot of myself when you told us about your son. My pfts had dropped to less than 40% and wasn't doing any treatments. But about two years ago I had my eyes opened. My parents played no role here. Of course they always wanted me to do my meds and take care of myself. But I had so many other things I wanted to do. Adventually I had a life changing experience and I began to take excelent care of myself and am incredibly healthy because of it. Unfortunately I think Emily is right that I don't think you can do a lot about it. My girlfriend can be very pushy about my meds too. Does he have someone in his life that is close like that? I think often parents can't fill that friend role at that age.

Jake
 
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anonymous

New member
Boy I sure can relate to this one.

I have a son, 26, whose case I am always on. The only advise that I can give you and I know is very hard to do, is to just "Bite your Tonge" It has taken me many years to practice this advice but after so many arguements etc. I finally have realized that there comes a time when, as a parent, you have to stand back and hope that the decisions they make regarding their health is the right one. Does he have a girlfriend that can help? I find usually that helps more than anything because boys do tend to listen more to girlfriends than parents, (I have no girls to compare). Girlfriends advice is "advice" parents advice is "nagging"

Sandy
 
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anonymous

New member
Thanks to all of you who gave me your advice, and opionions. Although it will be hard to back off of him a little bit, and I don't know if I can, but I will try. Yes, he does have a girlfriend, whom he's been with for only a few short months. She found out about the CF only about4 months ago. Scared at first, but adapting, and now reading more into the CF, I think she is seeing how important it is for all of his treatments. But again as a Mom, she is high maintenance, and it's tiring him out. That's what scares me.
I told him about this board, and I am hoping that he will come and join. As a matter of fact it may be that I may insist he gets in here at least once or twice.

Thank you all from the bottom of my heart for your kind words of wisdom.

For the administrator on the board 'THIS IS A FANTASTIC BOARD AND I WOULD HIGHLY RECOMMEND IT"

Thank you all again.
 
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anonymous

New member
Hi

Feel free to email me if you would like to chat, sounds like we both have the same problems just a little difference in ages. (26 year old son).

Sandy
mcbrash1@rogers.com
 
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RadChevy

New member
Hi,

Very hard to be a parent and want to do more for your child.... hope it improves over time as your son matures......remember guys do not mature until about 25 or 26.... so just keep waiting for that brain to come in.

Your son's PFT's are in the 40's? Have his doctors mentioned that lung transplant is headed his way? He should be told this, and that may get him to act a bit faster on doing treatments. Lung transplant is a great option for those with end stage CF, but the longer you can wait the better. The surgery and the drugs will only improve and if your son can put it off for many more years, all the better.

Might his girfriend benefit from a CF book., like Dr. Orenstein's book? Her interest might spark him.

Just some thoughts today I had.
Joanne Schum
twoluckylungs@juno.com
 
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anonymous

New member
Thank you for your suggestions. As you can see it it very early AM, and I am up reading this board. My son is hacking away, and I can't sleep, although he is! His girlfriend has a book that I gave her, and she is reading it. The problem is I think my son should be reading it! He is aware that a transplant may be coming if he doesn't shape up. And I am sure after this weeks visit with the Drs. he will want to rethink what he doesn't do again! It's just so hard for me to sit and watch him do this to himself.
 
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anonymous

New member
Hang in there, we all have to make our own decisions and your son is ultimately the only one
who can make his decisions to take care of himself or not. I've been trying for the last almost
two years to have my teenage son take care of his medical things.......................... I have found
that if I keep asking him did he do his meds ect............... he just digs his heals in harder and then
it a battle of the wills. smile............................................... michelle, M of almost 15 yr. old son with C/F
 
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HollyCatheryn

New member
It'd be pretty hard to do, like everyone else has already pointed out, but I'd back off. Emily offered that you could say something if he directly asked, but I offer that even then you might keep silent on it or turn the question around to him with something like, "You know yourself best, what do you think?" Perhaps he feels ther is too much focus on his life as a person with CF and not enough focus on his life as a man? Does he have long range plans? Is there a good guy friend or older man that can help him to think farther down the road than just lunch? I know that when I went to college and had these long range goals of graduating, marrying, having a family, things started to change and I began to do my treatments. Now, like today, when my doc wants to change things and make more work for me with more treatments, I still don't like it, but I am much more likely to be compliant on a regular basis because because I've seen how it got me through school and now my goal is even longer range. I want to be, not just around but here and lively to enjoy my daughter's children. Perhaps he jsut needs a reason to live that is something that HE really wants. Something that is worth enough for him to really earn it. Guys tend do be worse than girls at compliance anyway, I don't know if it's a macho thing. There's a book called <EM>Growing Older with CF : A Handbook for Adults</EM> that I picked up at clinic a few years ago. It's got some good stuff some interesting stats on adults with CF as far as how many of us graduate college, get a masters or PhD, how many of us have kids or work part/full time. Things like that that might help him focus on a bigger picture and help him see jsut how many people with CF are having long, productive, fulfilling lives. The worste thing for getting someone to be compliant is to tell them that there's not a lot of hope - not that you've done this, but he may interpret the Dr reports as being hopeless and feel like "why bother now"?Perhaps something I've said can help you or your son. I wish you the best. I cannot imagine how your heart must break.
 
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