ok another routine problem

[stressed]

I am having a problem with my pre-teens treatments , it seems like all we do is treatments
all day long and have time for nothing else to the point she fights not to do them
and could care less if she gets sick or not ( just wants to be normal she says )
we do treatments in the am and pm for about 2 hours each , plus all her pills and
puffers inbetween, night time feeds and o2, she don't seem to get a break and
what makes it worse her sister with cf has very few treatments to do. I could use
any help that would work to get her through this point in her life. Thank you

 

[Faust]

I no it might fall on deaf ears because she is comin into teen land, but explain to her, either take care of herself NOW and have a much greater chance at living a decently long productive life, or neglect herself now and more than likely die very young, which won't be a fun, quick process. For me, I had troubles with CF in my teens also, and I've known many others who were the same. For many (like myself), if you can get through your teens with CF, and took as good care of yourself as possible and followed your regimen, theres a good chance you might "level out" and be able to be more "normal" in your 20's and 30's.

 

[JazzysMom]

Does she feel that coughing a lot, having difficulty breathing or ending up in the hospital is normal? Those are her alternatives to doing the treatment which could limit her coughing, difficulty breathing & admissions to the hospital. If kids want a reason to talk about her she should give the reason that she wants to live healthier & this is what it takes.....

 

[JennifersHope]

I probably have a slightly different perspective.... I do agree that treatments are essential to staying healthy.. no if, ands. or buts. However, I also think that mental health is just as important.. That is a ton of treatments she is on, if you are doing two hours in the am, and then two hours in the evening.. That is a lot. I only do one hour in the am and one hour before bed and sometimes it doesn't take that long...and I still hate it and have grown to resent the fact that I am demanded to spend so much of my time on treatments. I feel as if my time is stolen from me.

I wonder if their is a way to make things better for her, Maybe it is just where I am at in my life... (I am 33 dx at29) but quality of life is more important to me then just about anything..and if you are miserable all the time, it doesn't give you much insentive to care about being healthy much less anything else..

Is their a way you can help her with some of those treatments.. Like doing the nighttime feed for her, or maybe instead of doing nebulized albuteral if you even use it, try a hand held inhaled one, anything to cut down time....Maybe she can try using the computer and networking on IM or something to make the time pass. How about giving her insentive to do time on the vest.. Like for each day she does all her treatments, she gets some sort of reward, extra privlidges etc.

I don't think telling a teenager that she has to do this or she will get sick is enough.. I bet she probably doesn't care if she gets sick since she is miserable anyway... Shamefully I can feel the same way sometimes....If you have another child that has CF and doesn't need to do that many treatments, I am sure in your daughters heart she is happy for the other child, but that has to make her feel aweful and question what she did wrong or did to deserve being sicker... Maybe she just doesn't understand.. the way sickness is.... (or maybe I am projecting my own feelings ha ha) I would reassure her, and help her find her own way in life...

My point is in an ideal world ppl would do what was the best for them.. but sometimes they need a little help to get through hard situations, and sometimes that help is not telling the other person what to do but rather helping them to do it, being there with them, and making it easier to do. I know ppl whos spouses, parents or partners have helped by playing games with them, or sometimes actually hooking them up to the feeding tube or IVs at night so they could sleep etc.

I hope I made some sense... I am sure that with a little love and persistance your daughter will be back on track...

Good Luck,

Jennifer

 

[JazzysMom]

Silly me.....I never thought about the amount of time it takes. I guess since I dont work & just have my daughters schedule to worry about it doesnt phase me as much. Here is a few shortcuts that shouldnt affect her outcome of the treatment. Possibly combined meds like albuterol/pulmicort neb (if that is what she uses) & inhale during her vest. I am assuming she uses these things, but if not tell us what she does do & maybe we can find shortcuts anyway. Here is a big one which I dont know if its practicle for your family. How about a laptop or access to the computer while she does her treatments It has made a world of difference for me. Time flies by. This is of course presuming she uses the vest. Get her set up for her feedings. I dont think doing it all is helpful because then she might feel helpless, but just helping get things ready for when its time for hookup. Is she on O2 only at night? Can you give me more info on her meds & maybe I can think of other stuff!