Are there any parents/caregivers of older cf patients that are just finding taking care of a cf person is just getting so overwhelming? First of all I have to say how much I admire all of you who take such good care of yourselves, I know how much work is involved in your health care and you all deserve a medal. But there must be other parents out there somewhere who have adult children who just don't seem to take responsibility for their health and you still feel that you should be responsible for their care. I have an older son who, I wish, would take better care of himself. All I seem to do is nag him, I try not to because it only starts arguements, but when you live in the same house and see what their doing or not doing to themselves, how can you keep quiet. I know I can't be the only one with this problem so I would really love to hear from others in the same situation.
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overwhelmed
- Thread starter anonymous
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Hi, i can of course see how you are feeling, I am not a parent but a 20 year old who has watched my mom go through the same thing. My whole life when my mother was in charge of my health she did everything possible that she could, like eating PERFECTLY (not just eating right) doing therapy 364 days of the year no excuses, (i had christmas off)and sleeping taking meds, etc. Of course when i got older it was my decision, and really i think everyone goes through difficult but necessary phases. No matter how much you nag him there is usually a time in every person with Cf's life that they experience these kind of issues...and everybody has to go through this. I experimented with a LOT of things i know i shouldn't have done, but there is NOTHING my mother could have done to make me not do them, in fact if she were more pushy about it (like if it had really upset our relationship) i would have probably done more. The more you nag the more you are encouraging the perception that the disease is your disease, or something other from him....he will stop looking at it as something that effects him but more as something he associates with you, and he'll automatically ignore all of this. As soon as he really realizes that there is a direct correlation between what he does and how he FEELS, things will change. This is an illness, and as soon as people notice that they've felt a certain way thier whole lives, and then all of a sudden they dont, they wont like it, and habits will change. unfortunatley everyone needs to go through some kind of wake up call if they have deviant intentions, like myself. Its awful but YES i have smoked pot, done drugs, and i cant even believe it! I would never again, and maybe it hurt me in the long run, i will never know if it say, took years off my life, but it was almost something that could not be helped. thats the type of kid i was, and i have great great parents, but there's honestly nothing they couldve said or done that would have made me act differently.
you should try to get in touch with a woman named Debby who posted the "still struggling with a 20 year old" message, it sounds like you two are going through the exact same thing. But, I'm 22, and I went through a phase of not doing my stuff when I first went away for college. And it's part of cutting the apron strings, letting go is hard but you've got to let him be responsible for himself. I know there is a whole other set of problems because he still lives in the house. You're going to have to let him crash before he realizes that CF is a part of himself that he has to pay attention to. We all have to negotiate how it fits into our lives as we discover our identities as adults.Debbie
I am a 19 year old female with CF and I went through this same thing with my parents. My dad nagged me to death and I knew it was cause he was concerned about me, but it drove me crazy. I felt like I was no longer a little girl and didn't need to be bothered, but at the same time I wasn't taking great care of myself. I finally made a deal with my dad that he had to give me a week of NO nagging and if Idid my treatments (he could hear me doing my flutter) then he would give me another week, but if by the end of that week I had skipped some he could nag me as much as he wanted till we were ready to try the test again. Well, I knew that I did NOT want to be nagged so I did it for a week and was really good about it, but then next week I did a perfect job again. The third week I skipped two in a row and I felt awful, when I woke up my chest weighed 100lbs and i hated the feeling...to tell you the truth thats what got me on track. I had two weeks of clear lungs and skipping my evening and morning treatment made me feel so sick and it took my at least a week to feel back to normal in my lungs that I was scared to skip one again. About drugs and stuff. I was lucky because I really did love my lungs and cared about my health even though sometimes I skipped a treatment so I avoided smokers, pot, and drugs in general. I am wishing you good luck, I can't imagine how frustrating us teens must be when we mess with our health!Emm
At what age do you attempt to let go? We have a 16 yr. old, junior in HS that wants to go away to college. She knows what she has to do, is supposed to do, she knows what she feels like if she doesn't, but yet sometimes still doesn't do it, or do it correctly. We tell her at 9pm that it's late and time to get her treatment started because we still have to do her PT. She does all parts except her back, which we do for her. This is just the evening. My husband gets up at 5:30am to get his shower and dressed for work then goes in to do her PT while she is doing her treatment. For the AM, this is the only thing that works to fit in her treatment before school. WE have another daughter with CF too. We've told her that she needs to get on her treatment by 8pm, that we have an early morning and prefer to be in bed to watch the news at 10pm. But leave her to do it on her own, like on the weekends or vacation, and we find ourselves, one of us, having to stay up later to do her back or she doesn't do it at all. Sometimes, she says she did it. With the percussor wedged between herself and the couch. Here it is almost 11am and she's still not done her treatment today. (off of school for three days this week). I wonder honestly, will she be able to go away to college and stay well? She'd love to go out of country for college and has even checked into healthcare but that scares me even more! Not the healthcare but her taking care of herself. It's not like we could just hop on a plane any ole time if she felt bad. But that's a whole other issue. If she gets sick, it takes a toll on the entire family as you all know. But to let her take over and take that chance? How do you do it? It just doesn't seem like independence is something that is taught at the CF clinic. Any advice, word of encouragement? Thanks.Liza
Ok, the first thing I would suggest, is that you look into getting both of your daughters a Vest. A lot of patients don't like using it at first , it does take some getting used to, but the independance is priceless. I live away from home at college (I'm 22), by my self, and having the ability to do effective PT myself is the most amazing thing! Are you living in an area where you see CF specialists? They should be able to give you a world-wide list of CF centers if she is interested in college abroad. If you take her to tour colleges, you should be able to arrange tours at CF clinics as well. I attend Colorado State, and the health center on campus has developed a relationship with my specialists in Denver (who I still go see every other month) but when I get small colds, it's nice to be able to get care at school. You have to treat her growing up and leaving the nest as you would if she didn't have CF. Your doctor can help arrange for her to have a private dorm room if you are concerned about communal living. If you help her get excited about growing up, and don't treat her like she is still a sick baby (I know it's hard) she will be more likley to tend to her CF by herself. Most of us go through a phase of slacking and it is directly related to learning how to care for ourselves. Yes, we know WHAT to do, but we have to learn to discipline ourselves. People w/o CF do have to do it too. I would also suggest that you discuss a "deal" with her about school. Explain that you want her to pursue her goals and that you fully support her, but adjusting to college is damn hard. Perhaps a year or two at a school in the US, or closer to home to help her adjust ( let her know that the first two years are general ed. classes anyway) and let her see how her health plays into her life as a student. She could also find some really good semester abroad programs that are just as exciting. It's important that you discuss this stuff with her needs and wants in mind, and not yours. Like any other parent, you've done the best you can, and you just have to hope that you did 'em right. It would be really important that when she decides on a place, even if it's close enough to home to go to her old doctors, that she switch to an adult CF specialist if there is one in the area. This is sometimes a big adjustment for parents, too, because suddenly you are out of the loop. You are no longer entitled to sit in at appointments, and doctors will not openly discuss certain things with you. You must adjust. Also, adult specialists are more apt to handle adult problems that onset as we grow older. I've had SO much stuff change since I left the house. I've had questions about birth control, alcohol, family planning, diabetes, social security... and although pediatric docs do their best, it's just not what they are supposed to focus on. An adult clinic will giver her the adult support she needs. If she's interested, she can e-mail me if she has questions about CF and college.I've had to adjust to living alone, but I still go to school, travel, party, ski, camp, ect. It's not about staying alive, it's about living life. Debbie22 yr old w/ Cfdncox3@comcast.net
i think independence just comes at some time. but i also think we'd all like it to come sooner <img src="i/expressions/face-icon-small-smile.gif" border="0">most of the time, we just need CF to sort of bite us in the ass to take the responcibility. with me, it was when i was 16 and a half, and i am a hanson fan, and i found a site for hanson fans who have CF. one of the things on the site was a list of fans who have lost their battle with CF. died. now, i knew CF is fatal, but it had never hit me the way that list hit me. so i spetted up to the plate, as they say. i was used to skipping treatments, missing meds, doing stuff half-ass-edly, but i realized that i do not want to end up on that list in the near future, so i did what i could. then, of course, as you grow up, you just want to sort of do stuff on your own and be responcible, not having your mom/dad on your back about PT and such. i've been going to the CF clinic on my own since i'm 17, just because i felt this is something i'm ready to handle on my own and i don't want my mom to handle that. not being against my mom - i just wanted to be in charge of that. still, sometimes one of my parents would tag along, but that is only if i'm really sick, it's a long way to the clinic and when i'm sick i'm worried about going alone, what if i faint or something.i'm currently living with my parents, however, i've already lived on my own. i have enough responcibility to handle my CF care on my own. i think it's just easier for the person with CF when the parents take care of stuff. like, sometimes my mom would still lay out my meds for me, although she already knows from experience that i can do it on my own. but it's like a treat for me - i just have to take them, that's all. it's a bit like being spoiled, but in a good way.don't worry - eventually, we all come to our senses and take care of ourselves like we're supposed to.
To Liza-I would suggest that your daughter go to her doctor's appointments herself. Now she may already be doing this but it sounds like she possibly is not. It is true, with a lifelong disease like this you often have to crash and burn before you wake up, and that can take a permanent toll on your health in the long run, but, thats the way it is. I started going to my appointments by myself as soon a little bit before I got my liscence at around 16. At that point my doctors could technically not tell my parents anything without my permission, and vice versa. Now that I am 20, I am totally independent, but just a few months ago my mother and I had one of our wretched fights that happen every few months and she "swears" she understands now and it wont happen again. But it is hard, I will find out she has e-mailed my doctor and then she tells me later, sort of as if it was ok to do that without asking me first. I dont live at home full time anymore ( I am in college) so obviously she doesn't have the whole picture and cant tell the doctor info. from the right perspective. At a certain point you just need to stop...and 16 is a good time, tell her how it is, and then let it go. If she gets sick, it will be her own fault, and even though she wont admit it ever, she will know. Everyone has to go through it, there is no easy way, it just sucks. I also agree with the woman who said to get a vest. I JUST got one last month... i had a percussor too! I never knew anyone else had them. I did all the positions myself but once i went to college it was so loud i never did it and i wouldnt be caught dead doing it in front of a freind. I just got a vest and it is SO EASY, and great because you dont need to move, you can just sit and watch tv. Also it is quiet and small because they just came out with a new version in MAY that is like the size of two shoeboxes. I live alone now at school and do it alone and then it goes into a bag. Also i have ended up sometimes doing an hour of therapy when i used to skip entire weeks. Hope this helps. Where are your daughters seen by the way?
Hi, Thanks so much for replying. I'm sorry I haven't responded sooner. Computer troubles. My daughter isn't seeing her CF doc on her own yet. I think her next appt. will be though. We try to get appts. set for after school hours and now that she has a car I don't have to worry about picking up my younger daughter early just so I can get my older one to her appt. on time. So Nov. will be her first I think. Although we have already been told that we can either have Anna tell us about her appts. and/or have an e-mail or letter from the doc after the appt. At 16, I don't think that she can go to full disclosure. I know that will probably get uproars from someone but I don't mean "private" kinda stuff, just her CF care. She still sees a pediatrician as her primary doc. I know, I know, she says it too. "can't i just see a regular doctor?" In our case we are military and the doc that happens to know the most about CF is a peds doc. My husband and I were just talking about this forum yesterday at lunch. We realize that we will have to just let go. I have started her using her flutter again. We hope that all will continue to go well with that change. She did occasionally use a PEP but that got ruined by the dog. She has a port on her right upper chest (with in reach of her chin she says, she hates it still 7mo. later) so we don't think that a vest will work for her now. She hasn't been too keen on the vest anyway. Her percussor is new and is pretty quiet, her breathing machine is louder and she has a Duraneb 3000 and they're pretty quiet. My girls are seen at UNMC here in Omaha, Ne. Well I need to get going, I have a luncheon I'm supposed to be helping with today. Thanks agian, so much for getting back to me. I helps so much to hear what other girls have gone through and done.Liza
Caution: long post ahead. Me, my parents, and CF was like the menage-a-trois from hell. It started when I was 11 or 12. I was a very independent person but slacked off with the CF stuff. When I was away at home on my own, at sleep away camp or traveling, I always rose to the occasion and did (most of what) I had to do; there was no way I would risk having have my parents come pick me up if I got sick. On the other hand, at home, I was much less conscientious about doing “my stuff”. My mother, the indisputable Queen of Nagging, was constantly on me for years and years: take your vitamins take your enzymes go exercise do this do that! My father, while overall less of a worrier, had his moments as well. I rarely took my meds and seemingly ignored my health, which seemed like the best way of rebelling against my parents. The situation was at its worst during my clinic visits - I usually went to the hospital alone but my mother insisted on coming towards the end of the visit and speaking with the doctor. I hated this. I was very mature and conversable with the doctor, but inevitably as soon as my mom entered the room, I starting acting like a two year old. Needless to say, my parents were very worried when I moved out. However, once I left home, everything changed. I quickly learned to make my own appointments, deal with the pharmacy and the insurance company, tell my doctor what I needed and when. Next week it’ll be year since I moved out, and at least in terms of this medical stuff, I am 180 degrees from where I was then. My parents and I get into a lot of spats over confidentiality and how much I need to tell them – evidently, calling once in a while and saying “Mom, Dad, I’m still alive” will not suffice. I’ve spent a lot of time talking with my doctors and my insurance company about how important my privacy is to me, and they’re very helpful. My parents found that they had so much more free time once they no longer constantly had to worry about me that they got something else to worry about – a puppy! She’s the one they baby now. I feel really mature now that I’m in charge. I have a routine, I’m good at bugging doctors, I know how to work the system. <img src="i/expressions/face-icon-small-happy.gif" border="0"> It certainly feels better than having my mom on my case 24/7.CF is hard because you grow up fast, so when you’re 16 or 17 you feel like an adult (at least I did) and you have these issues to face that none of your peers do, but on the other hand in some ways you need your parents more than other people your age. My advice to all you parents is to let go. Stop telling your kids what to do and they’ll be forced to figure it out for themselves. Everyone needs to have CF “bite them in the ass” at least once; it’s like touching the hot stove. And let go sooner than later, that way if your daughter runs into trouble it’ll happen while she’s still at home and not in college across the ocean. You have to sacrifice your own peace of mind and let your daughter leave the nest; most likely she will prove herself, even if the road is a bit rocky along the way.good luck,scarlett
Scarlett, I want to thank you so much for your post. It was wonderfully stated. I do realize that we have to let go or least start letting go. My husband says, we should just drop everything next school year. Not remind her of her meds, treatments, etc. I agree but at the same time, it'll be her senior year, I'd hate for her to miss tons of school because we didn't keep on her. Not to mention what will the clinic think??? "BAD PARENTS". I do hear you though and really, really want her to get her independence back. I say back because while we were stationed in Germany her CF clinic there, well in the Netherlands, was geared towards independence. None of a CF patients care required "help" from a parent or partner. PT was mainly using the flutter and deep cycles of breathing. Seeing a physiotherapist (way different from a resp. therapist) at almost every appt. and every day when she was in the hospital, made sure that she was doing everything correctly. At 13 she was able to go on a week long school trip without either myself or my husband, as well as other overnight trips. It was wonderful, knowing that she didn't have to rely on anyone to get her treatments done. I will admit though that if she had or needed medical attention while on one of those trips we were lucky enough (coincidentally) that her primary care doctor also had a son in her class and was usually on the class trip. So she was available to check in on Anna just to see that all was going OK. And I do mean check in, she wasn't in her group or anything like that. But upon our return to the states our new CF clinic was almost horrified to hear that she had not been using chest percussion for almost 3 years. It took us about 6 months to stop doing it, and in the three and a half years we were overseas, we still reverted back to the percussor once in a while, just in case. We all long for that independence again. I will though take your advice into consideration and at least try to start letting go. At this point, I still make sure all her meds are refilled and picked up (they pharmacy wouldn't let her pick them up anyway) and refill her med. dispenser every week. I almost always end up washing her nebulizers. I don't know, it just seems like she has so much to do as it is. Maybe it's a guilt thing for me. Getting her homework done and eating to me seem to be the primary concern, other than treatments I mean. She has no extra curricular activities, it seems there isn't time. But as I keep telling them (I have two CF girls) I won't be around forever, then what will they do? I guess I should start now with Rachel too. Getting her to be responsible for her own things, treatments and meds. She I know will just as soon not do her treatments or PT. She's healthier, for now, that Anna. Hospitalized only once, active, and really doesn't have to work hard to gain weight. But she was diagnosed at birth whereas we didn't know about Anna until one week before Rachel was born. Well it seems I"ve strayed. Thanks again Scarlett!Liza
Liza, mind if I blabber on a bit more? I hope not . . . Like I said, it wasn't easy for me or my parents during high school. I fought with my parents daily, ran away from home a few times, and thought about filing for legal emancipation. I slammed my door so often that my father threatened to take it down. It wasn't all about CF, I know, because my brother (no cf) is 16 now and hates that house just as much as I did; but nonetheless it did have a lot to do with my health. Reading your post made me remember those times, and so I looked back at my diary from my sophomore and junior years: very angry, very desperate for independence. I did not have a support system except for my therapist, who was a life-saver, but realistically always reminded me that I couldn't survive entirely on my own, at least not yet. I was miserable and for years all I did was think about getting out of there.The good news is, once I finally got out, I did just fine. And furthermore, I get along better with my parents than ever before now that we don't live together. I NEVER did any kind of airway clearance growing up but now I do some because it's not about pleasing parents or doctors, its about feeling better. This summer, just before school started, I had an awful cough and did not want to start college that way, so I got a PT person and had her come for 2 weeks; it was very easy for me and I got caught up on True Hollywood Story! My parents were SHOCKED when they heard I'd gotten PT as I never ever do it. My school is about 4 hours from home, so my parents could come here if there was an emergency. But I have all my doctors here and I feel so safe. Now whenever I go home I kind of like to show off how responsible I can be. Anna and Rachel are lucky to have a mom who cares so much - as much as we resent it it really is better than the alternative (I can't believe I'm saying this . . .) However, "They're just doing this because they care," is little comfort for a girl who feels that she is treated like a baby and that her parents don't let her do things on her own. I would certainly recommend backing off of their care as much as possible. You have to really do this and not be sneaky. I have cfrd and my dad always sneaked into my room to look at my blood sugar meter - not a good move if he wanted me to trust him! My mom always snuck sugar things or enzymes into my bag, which I always threw out upon discovery because I was so angry. That said, you should make it as easy as possible for your daughters to really stick to their own routine. Make sure the girls have a good way of organizing their meds, if they are trying to gain weight make sure you buy what they like to eat, etc. I think the most important thing is that you have to get used to being uncomfortable and not feeling totally in control. Letting your daughters take control will probably be nerve-wracking in the beginning, but it will get better.I hope this is helping . . . I would've given anything to have parents who knew a better way to handle me.~scarlett
Liza, Good luck with the girls. It sounds like you and your husband are working togeather and creating a support system for eachother. It's funny how CF care differs across the world. I use the flutter mostly and the autogenic drainage techinques. Your girls should get back into that too, so that they can feel the independance. I recently got a brand new vest and it's really doing alot. I, like scarlett, hardly ever did percussin growing up, and luckily I was only hospitalized once in eighteen years (I picked up mono and it grew to pnemonia.) But now that I'm at school, and I live alone, I need to do really effective airway clearance, and that comes form doing a combination of techniques. At my CF clinic in Denver (wich is a the rule of thumb is to find a care regement that you will stick to 70-80% of the time. I hope things go well.Debbie20 yr. old w/ cf
HI you guys! It's late so I won't say much tongiht but I did want to say THANK YOU SO MUCH! We are trying the backing off. I talked with Anna and just came right out and asked her if she'd rather we not bug her "ask her" if she took her enzymes or "remind" her to start her treatment and she said "YES!" So I told her that I would try as best I could to not ask or remind. Goodnight for now. Liza
I am 37 years old and new to the whole CPT and neb. treatment scenario. How is that? Well, I was diagnosed with CF at age 21, but only had staph; easily treated with oral antibiotics. In 2001, I picked up pseudomonas and my health has not been the same. I guess that I am like your kids. I am an independent soul with places to go, things to do and people to see. Nebulizer treatments are a real drag. I am used to being the care-taker (I am a paramedic by profession), not the care-receiver. I guess I suck as a patient. I have been taking oral meds--not a problem!! The sit down and use a neb. is a difficult transition. Is it more difficult to continue something that has been forced on you since childhood, or something new imposed during your adulthood? I am slowly trying to adapt to the concept that without proper care, I am bringing myself down. Not today, not tomorrow, but years down the road. The incremental changes that are apparent in my PFT's show a down-ward trend. I have gotten the point and begun to wise up. I have to think about doing nebs TODAY. If I think about THE REST OF MY LIFE, I become overwhelmed. I try to fool myself into thinking I have a choice each day. I have begun to choose health. You can't control your kids, they have to be allowed to come to this realization on their own. You have to let go at some point, no matter how much it hurts.
sometimes it's just that somebody tells you what you should be doing that sets you in the "NO" mood. me and my mother had this problem during my teens, and sometimes we still do. mom is used to being the one who deals with all my cf stuff, and she felt that if she doesn't tell me what to do, it won't be done. thing is, the more she nagged, the less motivation i had to actually doing it. my doctor and her agreed that she'd give me weeks of freedom when i was 16 - she cannot say a thing and i am responcible for my own cf care. she just needs to provide the meds and food, but it's up to me to eat and have my treatments done and meds taken. then after the freedom week, if she sees i have managed on my own, she lets go. for another week. but if i don't do stuff, then she has the right to nag and make me do them. gradually, over the years, she let go. she doesn't tell me anymore to do this and that. it was just a matter of proving to her that i can manage on my own, but it's hard for her because she's so used to taking care of me, in our mother-daughter relationship her taking care of my cf was the primary bond and now that i do that on my own, she feels a bit "out-of-job". it's common in cf parents. but liza, don't let go until you're sure your girls can do all this on their own. my mom still gets me refills; basically, it's not really because i can't do that on my own but because she sort of needs it for herself, it makes her feel that she's still in her "job", she still has some responcibility.
You all have been so helpful in telling me how you have all survived your parents and what they did for you to take control of your own lives. As I mentioned before we have decided to let go a bit and not remind (aka. NAG), Anna about taking her meds or do her treatments. We are going on our second weekend. I have to say though that I still ask our other daughter (13yrs) if she took her enzymes and Anna still answers. Probably because I just ask, "did you take your pills?", not specifying that I'm speaking to Rachel. And we/my husband, did have to tell her last night to get on her treatment because he was tired and wanted to go to bed early. He needed to do her percussion on her back. She has expressed an interest in going to DC for a school trip next year so we are working towards independence. Now if I can just get her to at least tell me she needs her pulmozyme refilled more than a day before she runs out. But the treatments are a start. The weekends are the the real test because my husband gets up in the early AM to do her school day treatment, but on weekends she's on her own to get them done. Last weekend it was noon before she got them done. So we'll see how it goes this weekend. But we are working on it. Thanks again you all for your help!Liza