Hello everyone! This is my first time writing, and I was hoping that someone could help me. I am a family member of someone who has cf, and I love and support them with all of my heart. They currently have to be hospitalized every two or three months, go on intravenous iv's, treatments, etc, and stay in for about a week each time. They also have colonized mrsa and several other complications, which makes things very difficult. They are currently working in a hospital, which puts them in contact with many things that can be harmful to them, and have been advised by several of their doctors that they should not be working there, because it is putting them at risk, and if they are having an active cough, they are contagious to anyone who is immune compromised. My question is this, what is the best way to help them feel supported, and still be able to share concerns about some of the choices they are making? When people who love and care for them share concerns, they feel that aren't being supported. Also, what do you suggest is the best way to help, when they don't listen to the advise of their doctors, and feel that somehow, their case of cf is different from other cases, and they don't "have to follow doctors recommendations"? I would really appreciate hearing any advise that you can give me. Thank you. Chloe
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i need your advise
- Thread starter chloe
- Start date
Hi Chloe,
Welcome to the website! I am sure you will find a lot of support here. I always do. People seem to be so willing to give of themselves here, and are more than willing to share how things work for them.
I am not the best person to answer your question ( I have CF and am pretty hard headed myself) but I know there are a lot of family members/caregivers on this website who would be more then willing to share with you how they deal with their loved one and the choices they make.
I think it is wonderful that you are looking for the best way to support them. Some people would do anything to have a good support system. So I am sure they are blessed just to have you in their life.
Good luck to you
Welcome to the website! I am sure you will find a lot of support here. I always do. People seem to be so willing to give of themselves here, and are more than willing to share how things work for them.
I am not the best person to answer your question ( I have CF and am pretty hard headed myself) but I know there are a lot of family members/caregivers on this website who would be more then willing to share with you how they deal with their loved one and the choices they make.
I think it is wonderful that you are looking for the best way to support them. Some people would do anything to have a good support system. So I am sure they are blessed just to have you in their life.
Good luck to you
Mockingbird
New member
This reminds me of <a target=new class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=3984">this thread</a> I think reading that will give you an idea of where your family member iscoming from. =-)
I was dx at 7 & outside of taking my enzymes & a few hospital admits......most of that time I did no other treatments & felt I was different than those "other" people with CF. I had CF, but wasnt sick. I smoked pot & drank in school. I stopped the pot, but continued to drink even tho it made my whole physical being CF & not feel like crap. I just wanted to live life. I took pride in the fact that I controlled my CF & that my CF didnt control me. Until my daughter was born than I had to realize that for every action I took there was a reaction & not always positive. I had to stop thinking about myself & realize that my daughter didnt ask to be born to a sick Mom & its not fair to her. Of course it wasnt fair to anyone in my life, but as a parent it was more obvious for me to see that with my daughter. Up until I decided what best was best I didnt take anyone's concerns into consideration. Part of that was denial, but the biggest part was feeling like I was losing control if I did anything other then what I wanted. Even if it had a negative impract on me. I dont have much to offer you except dont harp. Maybe mention things casually now & then, but until THEY are ready to accept the situation your input can only help so much.
I agree with Jazzys mom about the losing control. Many people with CF don't feel like they have control over anything or very little. I know that I grasp for control even if it is just for the little things. Maybe your loved one is afraid of losing control or feels like they already did. For me I have been there where I felt that I was different and that I was not like other people with CF. Sometimes that is the only way I was able to get though the day. Who wants to feel like they can die at any time. I think it is good to be there for them as best as you can without it taking to big of a toll on you. I really believe that it is harder for the loved ones sometims then it is for us who have CF.
Best wishes.
Best wishes.