Writing to see if anyone else is going through what we are facing. We have (an almost) 20 year old who has been generally healthy most of her life and very proactive with her disease. PFT's have dropped drastically in the past year and she now faces her first hospitalization. She has been essentially non-compliant for the past several months and her attitude is "it's my life" and I'm doing what I want to. She has agreed to see a new doctor in the area where she now lives going to college and he has told her there is no other option than the hospital. Fortunately she has agreed to the one week stay followed by three weeks of home i.v.'s. (We'll hope and pray!) It's breaking our hearts to watch her self destruct after making sure the past 19 years she's had everything she's needed health-wise. She is an only child and we are struggling now almost as much as her initial CF diagnosis at birth. Any words of wisdom out there? Thanks! Jo
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Help! Parent of non-compliant 20 yr old
- Thread starter anonymous
- Start date
I never understood the parental part of things until I had my daughter (non CF) & then I found the pain as you watch your child hurt either physically/mentally or you just want the best for them. I also know what its like to be the "rebellious" one. I didnt do my treatments for most of my life after diagnoses at 7. My parents never pushed me either. I am now paying for it. Since having my daughter it has gotten increasingly hard to maintain my health yet I still chose to live like I was CF free as I always had. Sure a hospital admit would come into play now & then, but once I was out I was back to the routine. Until this year when I went into the hospital 2 times. First I missed Easter at home & then Mothers Day. Although I knew it always was hurting my daughter to not take care of myself, she never actually said it to me until this year. To hear it come out of the mouth of your baby is heart breaking & the best form of guilt that exists! I have been very faithful in doing everything that I am suppose to, but its hard to keep disciplined. Harping is the worst thing you can do, but maybe print this post & others as testimony that its not good for her. For her to hear first hand from those of us who have done the same thing & are paying for it now. For her to hear how we hurt family & friends during our "selfish" acts. I really dont have any magic answers. Sometimes we just need to work things out in our heads by ourselves. Sadly in the midst of doing that we suffer medically. Hopefully since your daughter has pretty much been healthy that this "episode" wont keep her down in her overall health. I hope things work out.
Emily65Roses
New member
Jo, I think we all go through tha at sometime or another. And if you push her, as I'm sure you know, you'll just make her hate her treatments more. Best you can do is wait by for her to realize what she's doing and pick up the pace again. Most of us pick up the pace again at somepoint, after we sit around testing our limits.
Jo
Sorry Jo, I have no advice. I will add though that although my nearly twenty year old does look after herself quite well, it is heartbreaking to watch her health deteriorate. Her pft's are dropping, her x-ray results are disappointing, she is tired, run down, coughs 24/7 needs so much time off work and it's just not fair. I hate it!! I can't do anything and when I leave the hospital at night and I know she is feeling sad and doesn't want to be there but has no choice cos this bloody disease just does what it wants, when it wants, I hate it. I just wanna take her away and stop it all. Days like today when she in in hospital and she hasn't yet improved at all, I feel worse than when she was younger or at the time of diagnosis. I find it so scary as she gets older obviously as she is needing IV's every eight weeks. I also find that we are expected to be able to handle it cos we have known about it for 19 years but I cried leaving the hospital tonight and most of the way home. I think it is hard for the young adults too cos they are taking it all on themselves. The adult hospital is so different from paed's. No special treatment just get on with it, expected to do all their treatments as well as work, social life, relationships. How many of us stick to programmes for exercise, weight loss etc - I know they know it is necessary but it must be bloody hard day in day out all their lives. it is not like they get a reward, I feel like they get a kick in the guts. Sometimes I feel she is slowly slipping away and if I feel like this, how may she feel. I don't know. I find young adults don't tell you much but if the dr tells them things and they don't tell anyone, then they are taking so much on themselves which must be hard for them. They shouldn't have all this crap. I know it is all a part of it but it doesn't make it any easier and I can't say I think it is fair cos I don't feel that way today when my heart feels like it is breaking and I can't stop the tears.
Loving Mom
Sorry Jo, I have no advice. I will add though that although my nearly twenty year old does look after herself quite well, it is heartbreaking to watch her health deteriorate. Her pft's are dropping, her x-ray results are disappointing, she is tired, run down, coughs 24/7 needs so much time off work and it's just not fair. I hate it!! I can't do anything and when I leave the hospital at night and I know she is feeling sad and doesn't want to be there but has no choice cos this bloody disease just does what it wants, when it wants, I hate it. I just wanna take her away and stop it all. Days like today when she in in hospital and she hasn't yet improved at all, I feel worse than when she was younger or at the time of diagnosis. I find it so scary as she gets older obviously as she is needing IV's every eight weeks. I also find that we are expected to be able to handle it cos we have known about it for 19 years but I cried leaving the hospital tonight and most of the way home. I think it is hard for the young adults too cos they are taking it all on themselves. The adult hospital is so different from paed's. No special treatment just get on with it, expected to do all their treatments as well as work, social life, relationships. How many of us stick to programmes for exercise, weight loss etc - I know they know it is necessary but it must be bloody hard day in day out all their lives. it is not like they get a reward, I feel like they get a kick in the guts. Sometimes I feel she is slowly slipping away and if I feel like this, how may she feel. I don't know. I find young adults don't tell you much but if the dr tells them things and they don't tell anyone, then they are taking so much on themselves which must be hard for them. They shouldn't have all this crap. I know it is all a part of it but it doesn't make it any easier and I can't say I think it is fair cos I don't feel that way today when my heart feels like it is breaking and I can't stop the tears.
Loving Mom
This is what I am scared of with my sister and my cousins. They are all in their teens now and doing great but how long will it last. My sister is one that always keeps things to herself. She was only diagnosed two years ago and is now 14. I know that she doesn't take her enzymes at school or when she has friends around. I don't know what she will do when she gets out on her own. Your posts have made me cry because even though I don't know exactly how you feel I can almost emagine it. I hope that eveything goes well for you and your children.
Beth
Beth
I think every teenager goes through that "rebellious stage". What makes it harder with the CF is that when that stage hits, it affects them more, because the meds and therapy are such a large part of their lives. When they stop them or rebel against them, it has a huge impact on their health.
Emily went through a brief period of rebellion. We let her do it (what choice did we have??) and she came back to discover that she felt better with the meds and therapy than without. She realized she could still be "Emily", but felt better when she managed the CF.
Hang in there......they all figure it out !
Emily went through a brief period of rebellion. We let her do it (what choice did we have??) and she came back to discover that she felt better with the meds and therapy than without. She realized she could still be "Emily", but felt better when she managed the CF.
Hang in there......they all figure it out !