My 19 year old son has recently began not taking his medications or doing his therapies on a regular basis. He only takes his enzymes. He told me the other day he is tired of CF and is now considered middle aged so why should he care, he's going to die anyway. Sitting there with tears in my eyes and my heart broken the only response I could give him was that I had never let him use CF as a crutch and I was going to start letting him now. That I loved him and he would live as long as the good Lord wanted him too. I told him that when he was born life expectancy was only 18 and now it is 37 so who was to say that by the time he is 37 it would be double that or a cure would be found. I know it is hard on him. I have tried to be the most supportive mom to him. We have allowed him to be a normal kid and participate in normal activities. He is now an adult and I can't force him to take his meds or do his treatments. Any suggestions?
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19 year old CF son not taking care of himself
- Thread starter LUCY13
- Start date
unfortunately we have all had to have very difficult conversations with our kids at way to young an age. while I have not had to have this particular one yet. I can say that what he is feeling is normal. I wouldn't worry too much at first. let him be angry with cf and rebel but remind him that treatments are what keep him at home or with friends doing what he wants. without them he'll just get sick and end up in the hospital for weeks. mostly just be supportive and let him make the right decision. he's just feeling trapped like he has no choice and he's tired of that. given a little time I think he'll decide for himself that he needs his treatments but then the decision will be his again. if after some time he's not moving back in the right direction ask the doctor to help add some pressure by showing him his decline and what they recommend for him to get back on top. does he have any friends with cf, pen pals or IRL that he can talk with. isolation is one of the hardest parts of this disease, there was a group on here not too long ago, early 20s looking for friends with cf. that could always help too.
Aboveallislove
Super Moderator
I'm so sorry mom. You sound like you handled it perfectly. Not sure if you are up on the research of meds, but maybe suggest he read about the drugs so close at hand. If you post his mutations, I can point you to some hints. Kalydeco has taken folks off transplant lists and to a much more normal life and the life expectancy for them I think is twenty more years. But I can find some links f it old help.
I went through the exact same thing. Around 18/19, I stopped doing everything except taking enzymes. Nothing my parents or doctors said could get me to do them again. Nothing.
If he's anything like me, he has to start them on his own. He will have a moment that makes him examine how he is treating his life. I can't say if that moment will come quickly or take time, though.
You, or someone else close to him, also may want to talk to him about depression. That age is when I became depressed and that contributed to my lack of caring.
If he's anything like me, he has to start them on his own. He will have a moment that makes him examine how he is treating his life. I can't say if that moment will come quickly or take time, though.
You, or someone else close to him, also may want to talk to him about depression. That age is when I became depressed and that contributed to my lack of caring.
sroeseler: Thanks for your response. We did meet with his doctor last Tuesday and she was very stern with him about his treatments because his lung function had dropped from 102% to 90% in 3 months time. I actually left the room so she could talk to him alone as adult to adult. She has been his doctor since he was 2 years old and I thought she had gotten through to him. He promised her he would start everything back up. She called Friday to check on him and I told her he wasn't doing what he had promised. Today I fixed condiment cups with his medications ready for each day so all he has to do is pick one up out of the basket and take it. There is no fumbling with each medication bottle, everything is ready for him. The only things I can't make easier for him is his VEST and breathing treatments. Praying he starts to see that keeping his lungs healthy is easier than trying to rebuild his lung function.
Aboveallislove: He is Delta F508. So Kalydeco is not for his mutation. We did attempt to enroll him in research for a similar drug for his mutation however his lung function was too good for him to qualify for study.
Printer: He has in additon to enzymes all his other meds such as multi-vitamins, vitamin D, ibrophen, cetirizine, omeprazole, zithormax, zyvox, TOBI, Albuterol, Hypersonic Saline, and especially his VEST (or any chest therapy). He did take his meds today, but doesn't think the TOBI or VEST are important.
nmw0615: I agree, that nothing I say is getting through to him. He told me to stop nagging him. So I am trying to help him without saying a word. I put his condiment cup of meds on the bar in the morning and pray he takes them. I have asked him about depression and as most teenagers respond, he rolls his eyes and says he isn't. I had him in counseling last year for similar thoughts of not caring, but now that he is 19 I can't force him to go.
Thanks to all of you for your responses and advice. I will take each one to heart and attempt to allow him to be angry at CF but at the same time be supportive and there for him. I appreciate each of you taking the time to help. Have a blessed day! <><
Aboveallislove: He is Delta F508. So Kalydeco is not for his mutation. We did attempt to enroll him in research for a similar drug for his mutation however his lung function was too good for him to qualify for study.
Printer: He has in additon to enzymes all his other meds such as multi-vitamins, vitamin D, ibrophen, cetirizine, omeprazole, zithormax, zyvox, TOBI, Albuterol, Hypersonic Saline, and especially his VEST (or any chest therapy). He did take his meds today, but doesn't think the TOBI or VEST are important.
nmw0615: I agree, that nothing I say is getting through to him. He told me to stop nagging him. So I am trying to help him without saying a word. I put his condiment cup of meds on the bar in the morning and pray he takes them. I have asked him about depression and as most teenagers respond, he rolls his eyes and says he isn't. I had him in counseling last year for similar thoughts of not caring, but now that he is 19 I can't force him to go.
Thanks to all of you for your responses and advice. I will take each one to heart and attempt to allow him to be angry at CF but at the same time be supportive and there for him. I appreciate each of you taking the time to help. Have a blessed day! <><
Lucy, I also mentioned having someone else ask him about depression. I did not tell my close family or friends that I was depressed. If they asked, I rolled my eyes and told them to "quit being ridiculous."
It took my cousin's girlfriend/fiancé asking me before I could even tell anyone that I wasn't fine and even then, I couldn't admit to depression.
As for putting together his meds, it's a temporary solution to a long term problem, in my opinion. That said, when I went through this, my parents came up with a system. I set a goal. I wanted to have a luxurious spa day without my parents commenting on the "waste of money" it was. So every time I did the vest/nebs/took meds, I "gave" myself a dollar and they wrote a "will not comment" card and contributed 50 cents. I developed a habit (which I think is one of the most important pieces), got enough money for the spa day, and had my parents' silence on the matter. This exact tactic probably won't work for your son, but figure out a goal that has absolutely nothing to do with CF and is more than likely 100% selfish.
Printer is also onto something. The thing that finally triggered me into caring completely about my health again was the birth of my cousin's daughter. I realized that I didn't want to be that family member that everyone pitied and used as a "do not do this" example. For years, people had told me I was incredibly strong and that they looked up to me. When she was born, I realized I was not as strong and didn't deserve to be looked up to. There was a lot of up and down, but that moment made it clear that I wasn't on the right road and had to refocus.
It took my cousin's girlfriend/fiancé asking me before I could even tell anyone that I wasn't fine and even then, I couldn't admit to depression.
As for putting together his meds, it's a temporary solution to a long term problem, in my opinion. That said, when I went through this, my parents came up with a system. I set a goal. I wanted to have a luxurious spa day without my parents commenting on the "waste of money" it was. So every time I did the vest/nebs/took meds, I "gave" myself a dollar and they wrote a "will not comment" card and contributed 50 cents. I developed a habit (which I think is one of the most important pieces), got enough money for the spa day, and had my parents' silence on the matter. This exact tactic probably won't work for your son, but figure out a goal that has absolutely nothing to do with CF and is more than likely 100% selfish.
Printer is also onto something. The thing that finally triggered me into caring completely about my health again was the birth of my cousin's daughter. I realized that I didn't want to be that family member that everyone pitied and used as a "do not do this" example. For years, people had told me I was incredibly strong and that they looked up to me. When she was born, I realized I was not as strong and didn't deserve to be looked up to. There was a lot of up and down, but that moment made it clear that I wasn't on the right road and had to refocus.
Aboveallislove
Super Moderator
If you haven't I'd also recommend Lisa Greene book of love and logic. She has some great lines like asking if there is anything you can say that will help him decide to take care of his lungs because you'd hate for him to regret it after once they are damaged and there are meds that can fix the cftr but can't fix the damage. The kalydeco like drug for his mutation will have study results out within a few months and to Aretha hopefully withing a year...and next generation drugs fr dd50f in aye five. Long before those mid thirties. And with the lung function he ad they must be in pretty good se....augh. This must tear you apart. Will pray for him and you
Lance2020x
New member
LUCY13, I am so incredibly sorry to hear what you and your son are going through.
I am also a [double] Delta F508 and went through something very similar to what your son is facing when I was about 17, and I'm now 27.
I wish there was something miraculous I could tell you that got me out of that funk, but it was just a conscious choice I finally came to that I was going to choose life over death, goals over depression, dreams over hopelessness and faith over anger.
I know that sounds cliche and cheesy, but it was an incredibly spiritual experience for me and to this day I refer to it as a turning point in my life.
So I just pray that your son has an earth shattering, revelatory moment where he chooses life and hope and dreams and goals and happiness and health and he's able to completely step out of this rut he's in.
I have no advice to give, but I can stand in that gap and tell you there is hope, and I'm sending thoughts and prayers to both of you.
I am also a [double] Delta F508 and went through something very similar to what your son is facing when I was about 17, and I'm now 27.
I wish there was something miraculous I could tell you that got me out of that funk, but it was just a conscious choice I finally came to that I was going to choose life over death, goals over depression, dreams over hopelessness and faith over anger.
I know that sounds cliche and cheesy, but it was an incredibly spiritual experience for me and to this day I refer to it as a turning point in my life.
So I just pray that your son has an earth shattering, revelatory moment where he chooses life and hope and dreams and goals and happiness and health and he's able to completely step out of this rut he's in.
I have no advice to give, but I can stand in that gap and tell you there is hope, and I'm sending thoughts and prayers to both of you.
Lance2020x: Thanks for your response. I hope all is going well with you. My son is a good kid and I know in my heart he is just simply tired of CF and afraid of the long term result. We are christians and I truely believe that the Lord will help him through this tough time. I appreciate your prayers.
Printer: I agree, I have used the fact that his little brother adores him and looks up to him. I tell him he needs to be a good role model for him.
Aboveallislove: I will check out that book. Thanks
nmw0615: Thanks for sharing such a personal experience. The suggestion of a reward system is actually a good one. Even though he is 19 he would maybe be open to something totally for himself as a reward. I will talk to him about it tomorrow.
I have always told my son that he has more courage than any grown man I know. I know in my heart that he knows that he strong enough to handle CF and to not allow it to discourage him in his life. He has been raised that he can do anything he wants. He played varsity basketball in high school and was co-captain last year. He could practice and play with the endurance of any player on his team. He is a fighter down deep, I just pray he realizes he has to do it himself I can't do it for him. Thank you all again for your suggestions, experiences and mostly your prayers.
Printer: I agree, I have used the fact that his little brother adores him and looks up to him. I tell him he needs to be a good role model for him.
Aboveallislove: I will check out that book. Thanks
nmw0615: Thanks for sharing such a personal experience. The suggestion of a reward system is actually a good one. Even though he is 19 he would maybe be open to something totally for himself as a reward. I will talk to him about it tomorrow.
I have always told my son that he has more courage than any grown man I know. I know in my heart that he knows that he strong enough to handle CF and to not allow it to discourage him in his life. He has been raised that he can do anything he wants. He played varsity basketball in high school and was co-captain last year. He could practice and play with the endurance of any player on his team. He is a fighter down deep, I just pray he realizes he has to do it himself I can't do it for him. Thank you all again for your suggestions, experiences and mostly your prayers.
S
stephen
Guest
LUCY13
A very timely email from CF Roundtable is "Seeking Volunteers to Share Experiences and Insights on Medication Adherence in Cystic Fibrosis".
http://www.cfroundtable.com/2014/03...s-on-medication-adherence-in-cystic-fibrosis/
It may be something you and/or others would like to investigate.
A very timely email from CF Roundtable is "Seeking Volunteers to Share Experiences and Insights on Medication Adherence in Cystic Fibrosis".
http://www.cfroundtable.com/2014/03...s-on-medication-adherence-in-cystic-fibrosis/
It may be something you and/or others would like to investigate.
Hi, I have a 24yr old son w CF that has gone thru the same thing. The docs tell me this is pretty common. He moved out for about a year when he was 21 and took terrible care of himself. He was in the hospital for a total of 60days that year and one of them being taken by ambulance and ICU for over the top spiked blood sugars. He was on a respirator for a few days and I think that really made a huge impact. I know it did on us. He moved back home when he found it too tough to make it financially and health wise. We were always on him to do his meds-vest etc and it was a battle. We backed off and let him run his show again.
He has since joined a work out facility and he swears he gets more clearance from that than his vest or inhaled meds. He is doing pretty well considering he is just taking oral meds and not as much inhaled. His lung functions have pretty much been in the 45-55 range for the last 6yrs and drop into the 30's when he gets to the point of hospitalization. My point is that he is taking better control and he did have that same why bother I'm just gonna die anyway attitude but now he seems to be onboard for the future. Maybe working out would help your son as well.
He has since joined a work out facility and he swears he gets more clearance from that than his vest or inhaled meds. He is doing pretty well considering he is just taking oral meds and not as much inhaled. His lung functions have pretty much been in the 45-55 range for the last 6yrs and drop into the 30's when he gets to the point of hospitalization. My point is that he is taking better control and he did have that same why bother I'm just gonna die anyway attitude but now he seems to be onboard for the future. Maybe working out would help your son as well.
stephen: Thank you for the link. You and Printer being in your 70's with CF are both inspirations.
marcycain: Thanks for sharing your son's experiences. I think having him join a gym might be exactly what he needs. Thank you for the suggestion. We have a weight bench and treadmill at home, but working out with others may be what he needs for encouragement.
marcycain: Thanks for sharing your son's experiences. I think having him join a gym might be exactly what he needs. Thank you for the suggestion. We have a weight bench and treadmill at home, but working out with others may be what he needs for encouragement.
"since he is 19 he is an adult now and there is nothing I can do" Every time I hear that from a father at my local CF organization I just cant get it. There is nothing you can do to make him keep on doing the treatments? how about leaving him without money, computer, playstation, time out with friends, car... Where are the old fashioned parents? what happened to "my roof my rules?".
Dont mean to hurt anybody, and maybe I wont be able to make my kids keep themselves healthy (they are 5 yo now) but right now I dont understand that attitude.
Dont mean to hurt anybody, and maybe I wont be able to make my kids keep themselves healthy (they are 5 yo now) but right now I dont understand that attitude.
scrapper1264
New member
I am praying for you and your family. It breaks my heart that you are going through this. Definitely get that book by Lisa Greene that someone else suggested - it has great ideas.
You said his lung functions had dropped from 102% to 90%. Based on these numbers he could be very similar to me. I've always had good lung functions for a CF patient. He's at an age where the permanence of this disease really starts to set in. It's also the age when anyone starts to break away from their parents. I to went thru this during my college years. I fell into bad habits as I tried to be a normal college kid in the dorm. I also think depression is a real issue and one that should be talked about more.
Starting in high school my parents made me do clinic visits on my own. As scary as it is for you now he has to own this himself. I agree with the others, if you can find someone else who cares about him and he respects to be the the messenger it may have more impact. Like any teenager he may tune out parents and even the doctors if he's had a long relationship with them. Given his lung functions there's no reason not to expect him to have a long and productive life. I have and I'd like to think that mines not even half over yet.
Starting in high school my parents made me do clinic visits on my own. As scary as it is for you now he has to own this himself. I agree with the others, if you can find someone else who cares about him and he respects to be the the messenger it may have more impact. Like any teenager he may tune out parents and even the doctors if he's had a long relationship with them. Given his lung functions there's no reason not to expect him to have a long and productive life. I have and I'd like to think that mines not even half over yet.
anien2: You stated to me "There is nothing you can do to make him keep on doing the treatments? how about leaving him without money, computer, playstation, time out with friends, car... Where are the old fashioned parents? what happened to "my roof my rules?".
Dont mean to hurt anybody, and maybe I wont be able to make my kids keep themselves healthy (they are 5 yo now) but right now I dont understand that attitude."
First of all, I am a very old fashioned parent. Until he graduated high school I took away his electronics, grounded him from going out and driving his truck, etc.". That doesn't work now, because he is an adult. His truck is in his name, he works, so his money is his money, he is in college! If I were to attempt to threaten to take any of those things away he would pack his things and leave my home. This something that I want to avoid until he matures. I know that some say show him tough love and let him leave, but no thank you. I worked to hard as his mom keeping him healthy all these years. I am not going to let him fall into a lifestyle of struggling to pay rent and bills and thus knowing it would be he won't care about his medicines\therapies then.
If I understand you correctly you have 5years old, well just wait till their teenage years, it's a whole different ballgame. My son is a good kid, he graduated with honors from a christian school, played sports, and is overall a very respectful son. I love and encourage him and pray he will begin seeing that yes CF is hard, but CF does not control his life, he does. I had to take a second to respond to you, because I was so appauld that you would judge a situation that you have never been in and clearly don't understand. From the bottom of my heart, I honestly hope and pray that you (or any parent) never have to struggle with this hardship.
scrapper1264: I am planning on getting this book this weekend!
Jet: Wow you are an inspiration too. I know that he is just going through this spell. It just breaks my heart to watch him. It is funny that you said your parents made you do clinic visits along starting in high school. My son actually goes in 6weeks back for a recheck and he is going alone. His doctor wants to see if he will come on his own and tell her the truth about his meds\therapies and all. I am concerned about depression, but since he is refusing to admit it, I'm seeking my uncle's help. My son really respects my uncle so I am praying he can talk to him. My dad passed away when my son was only 5 and my father -in-law at 13 so my uncle is like a grandfather figure to him. Congratulations on your marriage, daughers and life. May God bless you with many more years.
Dont mean to hurt anybody, and maybe I wont be able to make my kids keep themselves healthy (they are 5 yo now) but right now I dont understand that attitude."
First of all, I am a very old fashioned parent. Until he graduated high school I took away his electronics, grounded him from going out and driving his truck, etc.". That doesn't work now, because he is an adult. His truck is in his name, he works, so his money is his money, he is in college! If I were to attempt to threaten to take any of those things away he would pack his things and leave my home. This something that I want to avoid until he matures. I know that some say show him tough love and let him leave, but no thank you. I worked to hard as his mom keeping him healthy all these years. I am not going to let him fall into a lifestyle of struggling to pay rent and bills and thus knowing it would be he won't care about his medicines\therapies then.
If I understand you correctly you have 5years old, well just wait till their teenage years, it's a whole different ballgame. My son is a good kid, he graduated with honors from a christian school, played sports, and is overall a very respectful son. I love and encourage him and pray he will begin seeing that yes CF is hard, but CF does not control his life, he does. I had to take a second to respond to you, because I was so appauld that you would judge a situation that you have never been in and clearly don't understand. From the bottom of my heart, I honestly hope and pray that you (or any parent) never have to struggle with this hardship.
scrapper1264: I am planning on getting this book this weekend!
Jet: Wow you are an inspiration too. I know that he is just going through this spell. It just breaks my heart to watch him. It is funny that you said your parents made you do clinic visits along starting in high school. My son actually goes in 6weeks back for a recheck and he is going alone. His doctor wants to see if he will come on his own and tell her the truth about his meds\therapies and all. I am concerned about depression, but since he is refusing to admit it, I'm seeking my uncle's help. My son really respects my uncle so I am praying he can talk to him. My dad passed away when my son was only 5 and my father -in-law at 13 so my uncle is like a grandfather figure to him. Congratulations on your marriage, daughers and life. May God bless you with many more years.
athletixbc
New member
Depending on his activity level, the vest may not be necessary. In Canada the majority of patients are never even started on the vest and our outcomes are above the international average. Instead we are told to do active cycle breathing (deep breathing varying our body position to drain different parts of the lungs), and/or use a Flutter device, and/or do exercise that gets the heart rate up for 30 minutes 3-4 times a week. Personally, I did active cycle breathing and exercise only, with occasional nebulized meds during flare-ups.
Mind you, I did take all of my oral meds as prescribed and I was diligent with my exercise program. I just found that exercise took less time out of my days than nebs did, so I preferred it.
Mind you, I did take all of my oral meds as prescribed and I was diligent with my exercise program. I just found that exercise took less time out of my days than nebs did, so I preferred it.
imported_MaggieB
New member
I'm a 39 (almost 40!) year old with double delta f508s (plus an extra weird one). Every single person I know, with CF or without, has to do this 17-19 year old craziness. It's got to be hard on you parents to feel like all your years of hard work are down the drain, but I assure you, they aren't. All that wisdom is in there, like muscle memory, waiting for a chance to shine.
This is my advice: stop laying out treatments for your son. The biggest moment of my CF independence was when I came home from college and told my Mom to (a) stop asking me if I had my pills to go out and eat, and (b) to stop carrying extra pills in her purse. We are living longer and longer, and strange as it seems to me now, I will probably outlive my parents. I must make my own choices, for better or for worse. I'm married, have amazing family, and probably don't do everything I should. But that core of self-preservation my parents gave me is always in there.
Finally, the Vest (which I do) is only one method of airway clearance. Exercise is probably the best thing your son can do. Tell him to find an activity he enjoys and do that!
Good luck. You sound like a great parent.
This is my advice: stop laying out treatments for your son. The biggest moment of my CF independence was when I came home from college and told my Mom to (a) stop asking me if I had my pills to go out and eat, and (b) to stop carrying extra pills in her purse. We are living longer and longer, and strange as it seems to me now, I will probably outlive my parents. I must make my own choices, for better or for worse. I'm married, have amazing family, and probably don't do everything I should. But that core of self-preservation my parents gave me is always in there.
Finally, the Vest (which I do) is only one method of airway clearance. Exercise is probably the best thing your son can do. Tell him to find an activity he enjoys and do that!
Good luck. You sound like a great parent.