I am looking for support groups for parents of ADULTS with CF in the San Francisco Bay area. I am feeling a great need to get with others who have children who are no longer children, who have been out ofthe house for many years, but whose health is still as much or more vital to the parents. It is so difficult after you no longer have control over your child. Although my 36 year old son has been on his own for 16 years and is quite successful, when he has exacerbations I believe I feel them more intensely than I did when he was a child. Anyone have any suggestions?
Parents of ADULTS with CF
- Thread starter anonymous
- Start date
I don't live in your area but I can certainly relate to your feelings as I also have an adult son with CF. I think we know that, the older they get, the greater the chances are that we could lose them. My problem is in helping my son be more motivated to take better care of himself. When he was younger and dependent on us for his care, we made sure he followed the doctor's orders and did everything possible to keep his lungs as healthy as he could. However, he decided on his own that he didn't need to do certain things once he was on his own. I'm afraid now that he is paying the price and I feel so helpless. Fortunately he still seems to feel pretty well and is hardly ever sick. Yet his lung functions have been declining the past couple of years and I can't help but wonder if he isn't doing all that his doctor recommends. I would appreciate knowing if there are others here in the same boat and if you have suggestions on what I can do to help my son.
No I don't have advice but I do not how you feel. My son is 20 and when he was young we could encourage him to play sport, go to the gym etc but once they are at the adult hospital seeing the dr on their own it is bloody hard. They only tell us what they want, when they want. Dont get me wrong, he's a good kid, who looks after himself reasonably well but he does NO exercise anymore but does do acbt each day (I think) I think he possibly skips meds just because hes busy. The older he gets, the more scared I become each time he deteriorates and is admitted for Iv's. I am a loving Mom who still feels the same but because he is now an adult, Am i expected to be used to it or to not feel as I did when he was younger. it still kills me when I hear that cough and see him so tired and trying to keep up and juggle work etc. I just try to show I care, help out with our local CF centre with events. I do feel great knowing that as a family we always did our best for as long as we had control.
I'm so glad that this subject was bought up, there are so many of us parents of adult cf'ers that just have to sit back now and let our "children" look after themselves and just hope that they make the right decisions concerning their health and treatments. My son is now 27 and just undergoing evaluation for transplant, we should be hearing whether or not he has been accepted into the program within the next couple of weeks. Like the rest of you my heart just breaks when I see how CF is taking over his body and depends more and more on 02. Each birthday and Christmas I have a silent cry on my own just because he has made it through another year. CF has been my life for the past 27 years, there is not a day goes by that I haven't done something, read something, told someone about this disease and at times I feel so guilty that I am so obsessed with cf when I have the rest of my family to think of as well. I have always wondered how my younger son has felt over the years, has he felt left out?, have I paid enough attention to him?, has he had as much as I could possibly give to him like his brother has? I guess I must have done things right though as he has turned out to be the most caring, loving, hardworking individual that I could have wished for. He has helped out so much with his brother over the years that I just don't have the words to thank him enough. Even now, knowing that things are more difficult for his older brother to do he is always there to lend a helping hand when he can. My son did leave home for awhile a few years back, this is when his health started to deteriorate. Once he came back home I tried to control everything regarding his health and we just go into major battles over it. I have since learned to step back but it certainly is a hard thing to do especially when I see things that he should/should not be doing. For the most part he takes pretty good care of himself now, but still, as his mother I can't help but remind him to do things every now and then for which I get certain remarks back from him. Is it possible that we would have “Parents of CF Adults” as one of the Forum Catagories?.
Hi, reading your posts have made me cry. My child is only five, but the worrying is unbelievable I can't believe it gets any worse as they get older. I know that I don't really have the right to be here talking with you, I'm not there yet in your shoes. sorry but I just needed to ask about your second child, how did you make time for him? I wonder all the time if I'm neglecting my son. I too don't know how to balance the love and affection between the two of them. After all they are only 15mths apart. Anyway, take care and God bless you for doing such a great job! truly you have all done a great job by your children.
Please do not think that you don't belong here, as far as I'm concerned anyone that is dealing with cf is entitled to be in any forum whatsoever and the more you can learn from us "oldies" the better for yourself and your child. Regarding making time for others in the family, the one thing I'm thankful for is that my cf son was my first born so by the time my second son came along, the time spent with my cf son was quite normal for the youngest, so there really was no jealousy on his part at all. Both of my sons have always been close to one another and have spent most of their growing up years in each others company so there really has not been any sibling rivalry or jealousy toward each other, I have also made sure that they were always told how much they mean to me and how much they are both loved by me.
I agree that it would be wonderful if there was a specific topic or message group for parents of ADULTS with CF. I think we are all struggling with the same feelings and are also not able to truly "let them go" and be totally on their own. My son is almost 30, but I know he will always be my "child" no matter how old he is. I think it may be harder for mothers of sons because they want to assert their independence and be men. I feel very blessed that my son has stayed close to us but I do want him to be as independent as possible and have the experience of being on his own. However, in addition to the health issues, we always have to be concerned about the insurance coverage. He worked at a regular full-time job for a couple of years and had good group insurance but had to leave that job. He is on COBRA coverage now and is planning to return to school while working part time. I feel that I have a good relationship with my son and I think he does listen to me, but I have learned just how far I can go and no further.
AlwaysAMom
New member
I only have the one son with CF but I've always wondered how people cope who have more than one child, with one needing special attention. I've read on other boards about people with 2 or 3 children who have CF. I do know that I wish now we had tried harder to have another child but maybe it wasn't meant to be. We also know that the chances are slim that we will ever have grandchildren but there are advances being made and it is possible now for men with CF to father children through invitro fertilization. This is another big issue that parents of adult CF children have to deal with. Also, the concerns about them when they are in a serious relationship and/or if they are married. My son is still single but currently is involved with a very sweet girl. I worry that he will be hurt, but I so want him to have someone in his life who can give him the support that we cannot always provide.
Hi my BF has CF and it sounds like you all care alot about your children I get really annoyed with my BF parents as they don't really seem to care about him it is like him having CF is a nuisance to them I know deep down that they care about him but sometimes when I have been around at their place they have actually told him to stop coughing as the neighbours might hear they are more into keeping up apperances with people.
AlwaysAMom
New member
There are obviously exceptions to every rule, but I have never known a parent with a CF child who would consider him or her a nuisance or a burden. There are times, of course, that I have become irritated with my son but never because he has CF. If that is the case with your boyfriend, then I'm very glad he has found someone like you to give him the acceptance and support that he needs. A person without CF, even parents and close friends, can never fully understand what it feels like to have CF but it does help them to know they are loved and cared about.
These message boards have given me a great deal of understanding and perspective on how a person with CF really feels, deep down, because I think it is difficult for my son to share his deepest feelings with me. He also does not seem to be helped by participating in these boards at this time, although I've encouraged him to. I think he just doesn't want to be preoccupied with it 24-7 and feel that CF is ruling his life but I think it would benefit him to share experiences with others who have CF because they are the only ones who can really relate to how he feels. I would like to know how others in my situation, who also have adult children with CF, are coping with the feelings that they no longer have any real control over the care their "child" is receiving. It is a very, very helpless feeling especially if you think they may not be taking care of themselves as well as they should. My son also has a girlfriend who is very supportive and who seems to have more influence in motivating him to do his treatments than I do, and I'm very thankful for her.
These message boards have given me a great deal of understanding and perspective on how a person with CF really feels, deep down, because I think it is difficult for my son to share his deepest feelings with me. He also does not seem to be helped by participating in these boards at this time, although I've encouraged him to. I think he just doesn't want to be preoccupied with it 24-7 and feel that CF is ruling his life but I think it would benefit him to share experiences with others who have CF because they are the only ones who can really relate to how he feels. I would like to know how others in my situation, who also have adult children with CF, are coping with the feelings that they no longer have any real control over the care their "child" is receiving. It is a very, very helpless feeling especially if you think they may not be taking care of themselves as well as they should. My son also has a girlfriend who is very supportive and who seems to have more influence in motivating him to do his treatments than I do, and I'm very thankful for her.
AnotherCFMom
New member
I'm so happy to have found this forum and this particular thread. I have a 23 year old son with CF. He lives with us and watching him not taking care of himself is so difficult for me, my husband, and his younger brother. He was not hospitalized until he was 18, which we know is in part a reflection of the fact that we made sure he was compliant. Now as a young adult he struggles to make his CF treatments a priority, even on days when he has no school or work. His lung function is still quite good, though declining slowly. Mental health issues: anxiety and depression are a big factor, yet he is not making the efforts to seek the help he needs with that. He gets angry with me when I try to get involved or contact his care team. My husband is more inclined to take a hard line, while I'm the softy. We just don't want him to say to us when he's facing transplant, "I wish you had made me do my treatments." If nothing else, it helps to share this with other parents who understand.
Aboveallislove
Super Moderator
Hey mom,
If you haven't read Lisa Greene's book Love & Logic: Parenting Children with Chronic Health conditions, I'd strongly recommend. She has lots of great ideas on conversations and how to handle things like this. For instance, saying one time: "Honey, I'm wondering if there is anything I can say that would help you choose to do your treatments because if you need a lung transplant because you didn't, I want to know I've done everything I could." Or at another time, "I'm wondering if you think you'd regret not taking better care of your lungs when they have a medicine that can prevent further damage but it is too late?" (If you aren't current on the meds, you could ask if he knows what is out and coming out soon and coming out in next 20, to start the conversation). But I'd strongly suggest you read first and then you'll get what I'm saying. Hang in there. This has to be sooooo hard.
If you haven't read Lisa Greene's book Love & Logic: Parenting Children with Chronic Health conditions, I'd strongly recommend. She has lots of great ideas on conversations and how to handle things like this. For instance, saying one time: "Honey, I'm wondering if there is anything I can say that would help you choose to do your treatments because if you need a lung transplant because you didn't, I want to know I've done everything I could." Or at another time, "I'm wondering if you think you'd regret not taking better care of your lungs when they have a medicine that can prevent further damage but it is too late?" (If you aren't current on the meds, you could ask if he knows what is out and coming out soon and coming out in next 20, to start the conversation). But I'd strongly suggest you read first and then you'll get what I'm saying. Hang in there. This has to be sooooo hard.
imported_Momto2
New member
AlwaysAmom- Sadly, I have known parents that did not take good care of their child because they thought she was a burden. As horrid as it is, I truly believe they were trying to "hasten the process". They never had decent food in the house, hemmed and hawed before getting her medical care, didnt visit her much in the hospital (and when they did it was just to breeze through with a quick "hi and bye"), etc, etc. Just rotten parents. Her doc advocated for her until she was blue in the face but they didnt change. The kid knew what was going on (we all did on the ward, it was so obvious) and was so angry and bitter about it. She died at age 17. It was such a heartbreaking situation. I was just a young teen then, no power to help. 
Michael Klein
New member
I'm totally not a parent, but I can I just say how awesome you guys are? I'm the child with CF in the family and I see everyday how much it affects my parents and sister; I can't even begin to imagine the pain you all go through everyday. Creating a forum section geared towards the parents and those that have a loved one battling CF is a great idea and you guys should definitely do it.
It took me having my own kids to really understand how much I owe to my parents. Now I'm a lot better at letting them know of my PFTs and general health. I would still get a little bothered if they still thought my health is primarily their responsibility. As a child it was, but as an adult I need to be the primary party to take care of my health (as well as all the other adult things). Somehow that transition needs to be better understood and maybe planned through and executed over a few years (mid-teens to early twenties), because the stakes are pretty high for CF folks entering adulthood. I wish all parties working on that transition the best of luck.
Secondly, somehow we need to get the language of "blame" out of this conversation. Yes there is a responsibility for care and some people are truly negligent. But many times despite all we do to stay health, there may still be a decline. The cruelty of nature and/or the 'fall of Adam' (depending on your worldview) cause things to be how they are.
As my health declines, I don't want to or need to place blame on myself, or on my parents or my wife, or my health care team. And I don't want them to blame me or themselves either. Blame and guilt are a useless a waste of emotional energy. It is sometimes tough to accept that declines in health will happen, but assigning responsibility for a natural event to a person feels like an unfair burden.
Secondly, somehow we need to get the language of "blame" out of this conversation. Yes there is a responsibility for care and some people are truly negligent. But many times despite all we do to stay health, there may still be a decline. The cruelty of nature and/or the 'fall of Adam' (depending on your worldview) cause things to be how they are.
As my health declines, I don't want to or need to place blame on myself, or on my parents or my wife, or my health care team. And I don't want them to blame me or themselves either. Blame and guilt are a useless a waste of emotional energy. It is sometimes tough to accept that declines in health will happen, but assigning responsibility for a natural event to a person feels like an unfair burden.
Just wanted to say thanks to all you parents.
While im 32 and out of the house, when I have an exacerbation, I still rely on my parents for their support.
i know we probably forget to tell you thank you, and we probably don't think about how worried you still are about us.
so thank you.
im going to go call my mom now
While im 32 and out of the house, when I have an exacerbation, I still rely on my parents for their support.
i know we probably forget to tell you thank you, and we probably don't think about how worried you still are about us.
so thank you.
im going to go call my mom now
Aboveallislove
Super Moderator
Jenny, thank you so much. You brought tears to my eyes. And I do hope you called your mom!!! Honestly, all we "do" is nothing. But the worry, ohhhh, does that hurt, so make sure you always let your mom know how your doing, even if it is issues, because she'll always worry!!!
believingjesus
Banned
Thank you AboveAll for confirming that it really is okay to worry about our kids. My children are my whole life. My oldest one I am so very close to and it breaks my heart that he lives so far away. I love him with all my heart. I looked to this forum when he moved away as I can't see him and it hurts. He is a perfect young man and has always been perfect. I can talk to him and he puts up with my overprotectiveness. He always tells me he loves me when I talk to him on the phone. Without him I couldn't be here. He is everything I wish I could be in all ways. Like that song goes - He is the wind beneath my wings and he is my hero. He is mild-mannered and takes life as it comes and is the most responsible person I know. He is ambitious and driven and handsome and does not get upset easy and just perfect. Everyone who knows him likes him and everyone tell me what a good job I did but I know it was not me, it is him.
Last edited:
AnotherCFMom
New member
Dear Aboveallislove,
It is truly all about the love we feel, and our heartfelt struggle as parents to do and say the right things to support all of our children. The most important message I've tried to convey to my son in words and actions is that I am always there for him. We can only try to imagine how he must feel, how he must struggle - physically and emotionally - living with CF. We celebrate all of the progress with new medications and the hope for a cure in our son's lifetime. He was very touched when 30 of his friends, co-workers, and neighbors showed up to walk with him in the Great Strides event!
Thank you so much for the recommendation on the book.
It is truly all about the love we feel, and our heartfelt struggle as parents to do and say the right things to support all of our children. The most important message I've tried to convey to my son in words and actions is that I am always there for him. We can only try to imagine how he must feel, how he must struggle - physically and emotionally - living with CF. We celebrate all of the progress with new medications and the hope for a cure in our son's lifetime. He was very touched when 30 of his friends, co-workers, and neighbors showed up to walk with him in the Great Strides event!
Thank you so much for the recommendation on the book.
I am a grandmother with CF who has two adult grandchildren with CF. All your comments have been meaningful both as I watch my daughter and her husband struggle with finding the right balance and as I interact with the grandchildren myself. They are in college and are remarkably responsible, but I do worry that all their demands keep them from being as diligent as I, a retiree, can be in keeping up with the treatments. It is even more painful for their parents who are struggling to adjust to their children becoming adults, gaining independence, and to the fact that they have adult childen with a chronic disease. Fortunately, I am close to my DGS and DGD, so we can talk pretty openly about how to accept the responsibilities and frustrations that come with CF, while seeing ourselves as "whole" people who do not let CF define who we are. We must accept that sometimes the disease will define what we can do then, but we work hard to have CF be a part of our lives but not all of our lives. We all three are fortunate to be as healthy as we are, but I worry about what the future holds for my dear ones.