Advice for a bad attitude-

[Ricky]

Jane,
Sometimes Cfers such as myself get tired of having to take take medicine or doing breathing treatments or physical therapy. Sometimes the only way to get through to a hard headed person is with a little "tough love". I've had my bouts of bad additude when I was younger especially coming from a family with 7 children and me the only one with CF. There's two things he can do, get busy living or get busy dying. I chose the latter and I turned 40 2 weeks ago. He's lucky to be 14. People with CF younger than him die every day.

 

[anonymous]

I have thought to start a topic on this before, so Jane this is nothing personnal to you it is just the spot I decided to reply with my opinion. So my suggestion would be to give more space at the hospital. Now, I don't know your case and if you stay there with your kids at the hospital but I know alot of parents do. My opinion is that parents should not stay with there kids at the hospital except for maybe under age 5, and even go a a day or two or whatever without visiting. I am sure it would be hard but you are starting to let your children take control of their care and following what the doctors and nurses tell them to do. You may be surprised when you call to get daily reports of their progress. So a suggestion would be that you stop visiting until you hear that he is doing what he needs to do. Once you hear that you will come back and visit, etc.

When I was young, the hostipal for CF care was almost 2 hours away from our house. My parents could not afford to stay, they had jobs that needed to attend and I had other siblings. So as sad as it may sound, they essentially had to drop me off at the hospital and would come and visit on weekends. Now one may think that is not the right thing to do, but I think it helped me be the person I am today. Now I would hate it when my parents would leave that first day, but it went away and with no parents around and only nurses and doctors I think I did more of what I was suppose to do. It is one of those things that would be much harder on you the parents then the kid. It is kind of like wanting to pick your baby up everytime it crys, you eventually need to stay away and they will stop crying on their own.

 

[thelizardqueen]

I was in hospital a few times for digestive issues when I was young, and once for plugs in my teens, and my mum stopped staying with me over night, etc when I was 13. I actually liked it, as I felt more independent and a little adult. She would come during the day every second day to visit me, and I would have friends and family over too, but I actually got used to and liked being on my own in hospital.

 

[littledebbie]

Anon I think that is a really bad piece of advice. I can't imagine having been "just left" and unless a parent is ready to give up "all" input and opinion on health care and is prepared to be completely cut out of it all i would not suggest doing that. My thoughts would have been if you can't be here with me when things are at their toughest i don't really need your nagging opinions when I'm home and fine.<br><br>

Also, i do not think it's a power struggle the way so many parents are writing about it. it's not about kid vs parent. It's kid vs, CF and vs. their lot in life. This is not about YOU! And I think it can really iritate a kid when you don't grasp that.<br><br>

Editing to add: it's one thing to not stay the night or whatever becuase of distance, jobs or whatever but to do it like your making some point about how they take care of themselves....why get into a p*&&^%$ match with your kid over their health...not very constructive.

 

[Robin]

I know this is awhile after you posted this, but I just found this site. I'm sure my parents can sympathize with you. I'm 25 and live with my boyfriend. I still get a call from my Daddy every night to say good night and make sure I ate supper (and what I had & how much I ate) and to remind me I need to do my medicine. It is frustrating, but I know he's worried about me. Your son will realize that too. I went through a bad spell when I didn't take great care of myself when I was 18. My parents were totally helpless to do anything. I had moved out and was very rebellious. What snapped me out of it is my mom sat me down and scared me to death. She explained graphically what would happen to me. I argued at first and was MAD at her, but then I couldn't stop thinking about it. I don't think any therapist would agree with that method, but it worked for me. She just kept on and on until I finally heard her. We had a lot of screaming matches, but I know she loved me and that's why she did it. We would both end up in tears and it sucks to go through that, but in the end it helped me. I'm not saying this would work for your son, but it's a different approach.

 

[anonymous]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>littledebbie</b></i>

Anon I think that is a really bad piece of advice. I can't imagine having been "just left" and unless a parent is ready to give up "all" input and opinion on health care and is prepared to be completely cut out of it all i would not suggest doing that. My thoughts would have been if you can't be here with me when things are at their toughest i don't really need your nagging opinions when I'm home and fine.



Also, i do not think it's a power struggle the way so many parents are writing about it. it's not about kid vs parent. It's kid vs, CF and vs. their lot in life. This is not about YOU! And I think it can really iritate a kid when you don't grasp that.



Editing to add: it's one thing to not stay the night or whatever becuase of distance, jobs or whatever but to do it like your making some point about how they take care of themselves....why get into a p*&&^%$ match with your kid over their health...not very constructive.</end quote></div>



I think you are missing some of my point and you can have your opinion, but I guess I didn't mean go to the kid and say I am not coming back until you turn starti taking more control, I mean be a bit more suttle than that. I think kids need to learn independance especially when they have something like CF that they have to take care of themselves. I am not saying parents should not be involved, they can call, etc talk to the doctor or even child on the phone. It adds a different prospective. I also think it is important at this age to start talking to the doctor 1x1 without parents there, parents can have seperate conversation or have a conversation together afterwards. They need to be in a situation to develop a 1x1 relationship with a doctor, a RT, or a nurse. It is this type of person who can have a huge impact and its my opinion this won't happen if the parents are there to.

 

[thelizardqueen]

I didn't start going to my appointments on my own until I was 18 and went to Adults. I think that's the case for most CFers, and that's perfectly fine. Parents know what their kids can handle and what they can't. Its usually at 18 that CFers go on their own. I think 14 is too young to be going to appointments on their own. Heck at that young age I didn't even know all of the ins and outs of CF quite yet, so I know I would be nervous at going to clinic on my own at that age.

 

[anonymous]

I guess everyone is different and clinics are different. I am sure they are different now, it has been over 10 years since I have been to an actual CF clinic. My mom used to come to the clinic with me, but the doctor always wanted to talk to me alone first and then my Mom would come in and talk some more. My mom would also talk to the doctor alone sometimes while I was waiting to see him, (I was not suppose to know this I think), then he would come talk to me, and then tell me to go get my Mom and then see would come in.

While in the hospital I developed a great relationiship with one of the RTs, this would never have happened if my parents were there everytime the RT was there. I was young but he did not treat me that way, he toalked to me not to my parents. I think there is a huge differece. In fact I don't think he really ever talked to my parents. That is probably what was so successful.

 

[anonymous]

BTW, I think there is some difference here between Male and Female as well, although everyone is different.

 

[KristasMom]

Oh, GEEZ, he sure sounds like my nephew w/CF. He just wont do anything to take care of himself. He, too, went through a rebellion about it. But, he's 25 now and doing pretty well.