New and looking for guidance

Jamaca59

New member
Hello, everyone. I've been "lurking" for a while and decided to join in today. I really hope I can give someone else good advice and support down the road, but now I am looking for just that.

How do other mothers let go of adult children and keep their sanity? I see that my daughter (20) is not taking good care of herself. She does still live at home (for now) but frequently visits friends. She just came back from a week away and is not well. Instead of doing any treatments she is sleeping a lot...

A background on Lyn: She was diagnosed at 2 months for failure to thrive; was hospitalized twice when she was very little for bowel obstructions; at some point we found out her liver was cirrhotic and her spleen was quite large; she had a few tune-ups here and there until about 7th grade, then - she became anorexic and bulemic, (which is terrifying because the liver problem caused enlarged veins in her esophagus which could have ruptured) she began talking of wanting to die and hating her bloated tummy; she was admitted to an inpatient psych hospital for three weeks then, at which point they wanted to send her away to an eating disorder clinic (I could not do it. There were no guarantees of a cure; I just wanted to bring her home); during the next year we were winning the battle with anorexia, but she was diagnosed with diabetes. That was a blow to her; she still hates the thought of it. During high school she had to quit track due to terrible aching in her joints. Just over two years ago she was given gentamicin for a lung infection - and ended up with ototoxicty, barely able to walk and suffered bouncing vision. We were told it would never go away, but she could - hopefully - learn to cope with it. For a girl who snowboards and drives a motorcycle, it was utterly devastating. She can now finally do both, but still has trouble in certain situations. Last year she was diagnosed with kidney stones and had to have lithotripsy for those. Right after that she had a sudden, excrutiating headache; we found out that she had had a brain bleed on her pituitary gland. They think it was caused by her low platelets - another indirect product of cf. Now she has to keep any eye on that and be wary of vision and hormone problems.

Through all of this her lung function is still pretty darn good, but she just appears to be giving up. She wants to move out and have her own place, but has discovered that financially it is nearly impossible (even if we helped her as much as we could). She is an adult. I cannot "make" her take better care of herself, just provide encouragement. But how do mothers cope with this? The "letting go" ? I live in a remote area of Upper Michigan. We have never had contact with other cf families, sadly enough. I feel as though I have coped all of these years, but now I am lost...
 

Jamaca59

New member
Hello, everyone. I've been "lurking" for a while and decided to join in today. I really hope I can give someone else good advice and support down the road, but now I am looking for just that.

How do other mothers let go of adult children and keep their sanity? I see that my daughter (20) is not taking good care of herself. She does still live at home (for now) but frequently visits friends. She just came back from a week away and is not well. Instead of doing any treatments she is sleeping a lot...

A background on Lyn: She was diagnosed at 2 months for failure to thrive; was hospitalized twice when she was very little for bowel obstructions; at some point we found out her liver was cirrhotic and her spleen was quite large; she had a few tune-ups here and there until about 7th grade, then - she became anorexic and bulemic, (which is terrifying because the liver problem caused enlarged veins in her esophagus which could have ruptured) she began talking of wanting to die and hating her bloated tummy; she was admitted to an inpatient psych hospital for three weeks then, at which point they wanted to send her away to an eating disorder clinic (I could not do it. There were no guarantees of a cure; I just wanted to bring her home); during the next year we were winning the battle with anorexia, but she was diagnosed with diabetes. That was a blow to her; she still hates the thought of it. During high school she had to quit track due to terrible aching in her joints. Just over two years ago she was given gentamicin for a lung infection - and ended up with ototoxicty, barely able to walk and suffered bouncing vision. We were told it would never go away, but she could - hopefully - learn to cope with it. For a girl who snowboards and drives a motorcycle, it was utterly devastating. She can now finally do both, but still has trouble in certain situations. Last year she was diagnosed with kidney stones and had to have lithotripsy for those. Right after that she had a sudden, excrutiating headache; we found out that she had had a brain bleed on her pituitary gland. They think it was caused by her low platelets - another indirect product of cf. Now she has to keep any eye on that and be wary of vision and hormone problems.

Through all of this her lung function is still pretty darn good, but she just appears to be giving up. She wants to move out and have her own place, but has discovered that financially it is nearly impossible (even if we helped her as much as we could). She is an adult. I cannot "make" her take better care of herself, just provide encouragement. But how do mothers cope with this? The "letting go" ? I live in a remote area of Upper Michigan. We have never had contact with other cf families, sadly enough. I feel as though I have coped all of these years, but now I am lost...
 

Jane

Digital opinion leader
Hi,
Welcome, I just joined last week.

I often wonder how the "letting go" part works when you child becomes an adult. For all those years the main focus of the family is keeping this child healthy. How do you back off and let your adult child fail? I know it's THEIR body and THEIR disease, but they are still OUR children.
Sorry, I don't have any advice, but I'm with you on this. Maybe some of the young adults can tell us how their parents handled it.
I posted a question about a similar thing with my 14 yr old son. People gave me some good advice about letting him take control, but its gonna be tough.

Jane
 

Jane

Digital opinion leader
Hi,
Welcome, I just joined last week.

I often wonder how the "letting go" part works when you child becomes an adult. For all those years the main focus of the family is keeping this child healthy. How do you back off and let your adult child fail? I know it's THEIR body and THEIR disease, but they are still OUR children.
Sorry, I don't have any advice, but I'm with you on this. Maybe some of the young adults can tell us how their parents handled it.
I posted a question about a similar thing with my 14 yr old son. People gave me some good advice about letting him take control, but its gonna be tough.

Jane
 

anonymous

New member
Hi, my name's Charlotte. I joined yesterday. I've got a 2 year old daughter with CF. She was diagnosed at 6 weeks. At present has got PA which is pretty tough cos it keeps coming back. Got it at 10 months old. Had 3 weeks of Cipro and 4 months of Colomycin via neb. Was clear after that. Got it again exactly 12 months last October. 3 cough swabs showed clear, then showed up again at her annual review. Started Cipro last nite again for another 3 weeks and Colomycin. Seems be going round in circles and it is freakin me out cos I'm worried that if we don't get rid soon, she might have to have IVs and she is at a very difficult age! Have you got any advice.

Thanks.

Charlotte<img src="i/expressions/oxygen.gif" border="0">
 

anonymous

New member
Hi, my name's Charlotte. I joined yesterday. I've got a 2 year old daughter with CF. She was diagnosed at 6 weeks. At present has got PA which is pretty tough cos it keeps coming back. Got it at 10 months old. Had 3 weeks of Cipro and 4 months of Colomycin via neb. Was clear after that. Got it again exactly 12 months last October. 3 cough swabs showed clear, then showed up again at her annual review. Started Cipro last nite again for another 3 weeks and Colomycin. Seems be going round in circles and it is freakin me out cos I'm worried that if we don't get rid soon, she might have to have IVs and she is at a very difficult age! Have you got any advice.

Thanks.

Charlotte<img src="i/expressions/oxygen.gif" border="0">
 

anonymous

New member
Ps How do you login with your name showing? Cos it just won't work 4 me?! Ta.

Charlotte<img src="i/expressions/face-icon-small-frown.gif" border="0">
 

anonymous

New member
Ps How do you login with your name showing? Cos it just won't work 4 me?! Ta.

Charlotte<img src="i/expressions/face-icon-small-frown.gif" border="0">
 

JazzysMom

New member
Did you register/join to get a username/screenname, Charlotte? If so you will need to rememeber that name & whatever password you choose. Then when you get to the forum, click log in in the right hand corner of the page & put the username/password. If you havent registered/joined, the only way to get it is to do so!
 

JazzysMom

New member
Did you register/join to get a username/screenname, Charlotte? If so you will need to rememeber that name & whatever password you choose. Then when you get to the forum, click log in in the right hand corner of the page & put the username/password. If you havent registered/joined, the only way to get it is to do so!
 

anonymous

New member
Did all that and got an e-mail back off them confirming my details, but still won't work.

Aaahh

Charlotte<img src="i/expressions/angel.gif" border="0">
 

anonymous

New member
Did all that and got an e-mail back off them confirming my details, but still won't work.

Aaahh

Charlotte<img src="i/expressions/angel.gif" border="0">
 

JazzysMom

New member
Interesting......I would post this problem for the administrator to look into for you! Sorry I couldnt help!<img src="i/expressions/sad_eyes.gif" border="0">
 

JazzysMom

New member
Interesting......I would post this problem for the administrator to look into for you! Sorry I couldnt help!<img src="i/expressions/sad_eyes.gif" border="0">
 

anonymous

New member
More resources become apparent when you think of CF as a disability.
For having independence your daughter is no doubt eligible for SSI and housing and job training.
Contact the ILC in your area for suggestions. Maybe that would be <a target=new class=ftalternatingbarlinklarge href="http://www.lcil.org/lcil/index.htm">http://www.lcil.org/lcil/index.htm</a> ?
 

anonymous

New member
More resources become apparent when you think of CF as a disability.
For having independence your daughter is no doubt eligible for SSI and housing and job training.
Contact the ILC in your area for suggestions. Maybe that would be <a target=new class=ftalternatingbarlinklarge href="http://www.lcil.org/lcil/index.htm">http://www.lcil.org/lcil/index.htm</a> ?
 
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