Hello, I am the mother of a 19 year old daughter with cf and diabetes. She also suffers from depression. The past year she has gone through a very difficult time. She has always been fairly healthy, but after a breakup with a long term boyfriend, she has not taken care of herself. She does not do her meds on a regular basis. In one month her lung disease has gone from mild to moderate. She skips medical appointments. She does not seem to care. Even on home IV's last month she would not come home at night. Because she is an adult, I can not force her to do anything. I told her she needed to follow the rules of the house. She then chose to live with her dad. I feel like I am seeing her life slip slowly away. She cancels her counseling sessions which I think is the ultimate source of her well being. She has tried different counselors. The only appointment she keeps are at the cf center. When she is given scripts,she does not get them filled. She shuts me out when I speak with her about her declining health. She does not want to speak about it. Her father sees her health declining significantly also and is urging her to check into the hospital, but she is continuing to rebel.The police did bring her into the mental health unit because she had stated she wanted to die, but she was released after a few hours. Has anyone got any suggestions?This is soo difficult for me to watch. All my life my daughters well-being has been my main concern. I can't stand to see her throw everything away. I have just started seeing a counselor to assist me with this problem, but if anyone can relate to this, please offer me some suggestions. Thank you
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self-destructive behavior
- Thread starter anonymous
- Start date
I can relate to your daughter. I went through the same thing. Although I was about 17-18 and I mainly did most of the meds I did just to make my mom happy. Depression is a hard thing to get over. I don't really know what to say, except that I got through it so it is possible to get through it. It just takes a while. It can't be fixed overnight no matter how much we want it to. Trust me no matter how depressed your daughter is she wants it to go away. Encourage her to see the counselor again. Maybe make a comprimise. Like if she sees her counselor you will try your best to stay off her back about her meds?? Sometimes when we are pushed and pushed and people are on our backs about doing things it makes us not want to do them even more. So maybe if you try not to push the meds it will be a bit easier for her. I am in no way saying you are pushy or on her back. I know you are just very concerned. But from experience, to her it may sound like you are still trying to control her life as if she was still 10. Even though she is 19, with depression, it can kinda screw with your mind and everything that crosses your mind seems to be negative, even a mom's concern. Could her CF docs get her to see a counselor? Or could the cf docs prescribe an antidepressant? I know you said she doesn't fill scripts but maybe she would if it was an anti depressant. I don't know the rules about anti depressants like how or if they (cf docs) are allowed to write scripts for them but its worth a shot. Maybe even you call her cf docs and tell her whats going on. She might be lying to them and telling them she is taking care of herself. I hope that she gets out of her "slump" and soon for her sake and yours. You will be in my prayers.Amadna
Hi there, my name is steve and I live in upstate new york. Growing up with cf was a very difficult thing to do. All the meds., all the treatments, it really did suck. My size was so much smaller than all of my friends. But, I had great friends that treated me like an equal. Our school was very small, so it was very competitive, in sports, and in the class room. My sickness kept me from participating in some sports, and it hurt not being able to be with my friends. And they knew it. I would skip treatments, and not take my pills with me when we went to a away game in sports. We always stopped at restaurant to eat after a game.College was very hard. I never did my treatments. I had my own room but I did not want to let anybody hear my machine when I used it. So, two years of college with a treatment here and there. It took a toll on me. I was hospitalized quite a bit after that. Then after college I met a girl. I fell in love with her as she did with me. Two quick years went by and one day she said she wanted to see other people. This crushed me. She wanted to have kids in the future, and knowing that I could not, she wanted to move on. It was the worst feeling in the world. I drank heavily every night, to kill the pain. I wanted to die. This girl knew everything about me and was completely comfortable with her. I had to start all over again, and I did not want too. With the help of my mother, being a single mother, my dad left when I was 13, and my friends I found my way through this awful, awful time. Time went on and met someone else, that I am married to and have a beautiful home, a truck like always wanted, and a husky. This coming june will mark my 5th anniversary from a double lung transplant. Now, I am a full tiome EMT- and a firefighter. Life is very good now, it was'nt for a very long time. There are times now that are hard, and not the greatest but I seem to muddle through it. So, help her, show her there is a life, a better life. Push her.I'm 36 turning 37 in september, life expectency for transplanted people(lungs) is 5 to 7 yrs. I am living 110 percent, full throttle, no fear. I have seen death, I was there before transplant. Ya know because you have a illness, you think life delt you a crap hand in the biggest game of your life, well it did, but now that I am healthy, strong, life has its crapy things to give to those healhty ones too. Life is just a cycle, its nothing serious....Write me a reply..........
Thank you so much for your concern. I just can't believe what a coincidence this is. I know who you are. Your mother goes or went to the same church as I used to. Actually, my daughter was confirmed there when she was 15 years old. I presently live in South Glens Falls still. I remember praying for you when you received your first lung transplant. I was always a quiet member of the church and never formally introduced myself to her. Unfortunately I do not go there anymore. Actually my daughter was admitted to GF Hospital last night with pneumonia, so bad she could not stand it any longer. She agreed to go to her local hosp. and stay throughout the course of treatment. Normally she stays in Albany where her doctors are, but at least she is hospitalized. She does have a script for anti-depressants, the question is whether she takes them or not. I just pray that she sees the light. I know her pain in her lung area has never been greater. I am just thankful she agreed to be admitted. She does do her med's as she thinks she needs to, which is a great deal different than the doctors orders. I am hoping when she does get better that she will visit this forum. I think knowing other people can relate to her feelings will be beneficial. She always tells me I have no idea how hard it is, which I don't. I tell her you only have 2 choices, get sick and possibly die an earlier death, or work hard and be as healthy as you can be. She is the only one who can make that decision.
buffikins23
New member
Unfortunately, I too know all too well what your daughter is going through. Only I no longer have a mother to nag me about taking medications and that is the cause of my depression. My mother passed away 2 monthes ago, while I'm in my last semester here at school. She was the main source of my strength to fight this disease, which I did not realize till just now. Because us CFers have to work sooo hard just to try to live a normal life, anything that goes wrong can really bring us down. It's hard to feel blessed when you have CF, Diabetes, Asthma and all the other junk that go along with this disease, then when a close family member dies, or someone you cared about leaves you it's hard to fight as hard, because you Live for the good things in your life. When the good things start to disappear you really feel you're fighting a losing battle. I do my treatments and I fight, though I don't do it for me as much as I do it for my family that needs me to live for their well-being. Sometimes it helps to volunteer, that way you're not so self-absorbed in what's wrong in your life. I sometimes help out kids my age that live in an assisted living development. They're mentally handi-capped, people look at them funny and judge them, they have trouble doing things on their own, and a lot of times they have no freedom from their parents. When you're working with people like that you realize how lucky you really are, and that you are blessed, and have reason to live if only to help others. BethanyCF/23/cfrd
Boy,oh boy ,do I know what you are going through if you read "I think I got it right now" you will see what I've had to deal with. I have no answers the only thing I can say, just be there for her always. Do ALOT of praying. You will shed alot of tears, just like me.If you ride her to hard she'll rebel even harder. I hate to hear how sick she is right now but, maybe it will be her calling, maybe she will not ever want to feel like that again. Be her friend, she needs you even if she says different. I will pray for the two of you! Hang in there! Skyleen
Bethany, I am sorry to hear about your mom passing away. That has always been my biggest fear so i can only imagine what you must be going thru. If you need someone to yell at you , or nag you to take you medicine and do your treatments, or just to vent, you can always email me Jinxnick@aol.com ~ Diane 39 / cf / diabetes / b.cepacia
Hi Steve I am writting you because I have a niece 29 yrs old and a nephew 26 yrs old that have Cf. up to now they have been in fairly good health, my nephew is more active than my niece and seems to be living his life. However, my niece is not doing that well, although, she is a teacher and has managed to be at school every day, until this last illness that has her in the hospital with a very stubborn lung infection. Now her doctors are talking about a transpant. I would be interested to know what hospital you used and any other information that will help me talk to her and her parents. Thank you for any help you can provide. My email addr is: lucyz@zozzaro.com
Skyleen,Yes, I did read your post. I can certainly sympathize with you. I would try calling his CF doctors and see if they can coordinate his care in prison. I don't know what state you are in, but actually I was afraid my daughter would end up in jail, just because of some of the things she was doing at the time. I even spoke with the CF centers social worker for help in addressing her behaviors. I was told that if she was ever jailed to notify the cf clinic and they would see that her medical needs would be met.Well my daughter seems to be making an effort this time. She apparently wasn't being treated with the proper antibiotics. This is the first time she has developed a type of staph infection. I am sure it has frightened her and I pray that she makes the right choices. She wants to stay in the hospital and finish her course of antibiotics which is very encouraging. I know that helpless feeling you have all too well. My whole life centered around my daughters health and well-being. I can only only hope she will make the right choices. I am really glad I found this sight. I am reading from so many people that sound just like my daughter. I think she will appreciate the fact that she is not alone in fighting this disease and there are many people out there who feel as she does.Back to your son, I would try and make the public aware of what is going on. Maybe a letter to the editor, or contacting your local newpaper with the story. The more people that are aware of what is happening, the more likely someone maybe willing to assist you. Maybe even a lawyer. Plus the prison would not like having the negative publicity either. Best of luck to you and your son! Dar
I am the mother of a 19 year old son with Cystic Fibrosis. His health is not good at all right now. He is hospitalized just about every 2 months and stays in for 2-3 weeks. Unfortunately, he has gotten B-Cepacia and MRSA which has caused a rapid decline in his healh. I did my best to make sure my son was as healthy as he could be. As a teenager he began to fight me on his treatments and meds. When he turned 18 he decided not to take his meds like he should. A few months ago when we asked how long he had to live, we were told (not directly) to enjoy the summer. That was a big shock!!! He is aware of this and still refuses to take care of himself. It is extremely hard to watch this destructive behavior! He has suffered depression for a while and 2 summers ago tried to take his own life. Thank God he did not succeed! He has totally given up. He is in his second year in college and has also given up on that too now. It is very hard to keep up when he is in the hospital so often. I am a basket case and try to push it all out of my mind. But it keeps creeping back in every day. I cry a lot.... I did not know this was a normal reaction for people with C.F. I wish I could offer advice and support but I am having a terrible time dealing with all of this. Thanks for listening.......
Steve, Not sure we have chatted before or emailed.When did you have have your lung transplant and what center? Sounds like you are doing great. Do you plan on going to the Transplant Games in Minnesota in July? I am planning a lung gathering and hope that nearly 80 lung recipients will be gathering.I had my lung in 1997 and my sister in 2001. Both doing great and like you, living life fully and enjoying the extra time.Email me anytime luckylungsforjo@aol.comJoanne SchumJoanne M. SchumCystic FibrosisBi-lateral Lung Transplant RecipientSeptember 12, 1997University of North Carolina Hospitals Chapel HillResidence: Upstate New Yorkemail: luckylungsforjo@aol.comManager of: Transplant Support - Lung, Heart/Lung, Hearthttp://groups.msn.com/TransplantSupportLungHeartLungHeart"Taking Flight - Inspirational Stories of Lung Transplantation" Compiled by Joanne SchumAuthored by lung recipients around the worldhttp://www.trafford.com/robots/02-0497.htmlhttp://www.trafford.com/
Hi Lucy, I am now 40 with CF and a sister who is 50 with CF. I can tell you having a sibling with CF has made our life so much easier and connected to someone who can relate the the CF difficulties.For myself I had a lung transplant in 1997 and my sister in 2001. I live in upstate NY as well, but I went to University of North Carolina Chapel Hiil for lung tx as they have so much experience and success. It takes research to choose a center, but most important on my list was surviving and living a healthy life after. So I chose not the closest centers.Happy to answer any questions you might have. Email me anytimeluckylungsforjo@aol.com.JoanneJoanne M. SchumCystic FibrosisBi-lateral Lung Transplant RecipientSeptember 12, 1997University of North Carolina Hospitals Chapel HillResidence: Upstate New Yorkemail: luckylungsforjo@aol.comManager of: Transplant Support - Lung, Heart/Lung, Hearthttp://groups.msn.com/TransplantSupportLungHeartLungHeart"Taking Flight - Inspirational Stories of Lung Transplantation" Compiled by Joanne SchumAuthored by lung recipients around the worldhttp://www.trafford.com/robots/02-0497.htmlhttp://www.trafford.com/
Hi! I am the mom of a 21 year old girl who suffered many of the"growing pains" your daughter seems to be suffering. About 3 years ago, her boyfriend was tragically killed in a automobile accident. My daughter wanted to just "die" with him! I was so worried about her and was very fortunate that my workplace was so understanding when I asked for time off to be with her. The first couple of nights were horrible, I won't ever forget her screams or her heartwrenching sobbing. She was prescibed anti-depressants and I remember having to beg her to "not give up." It was just awful, talk about feeling helpless! I prayed and prayed and held her and with the help of a wonderful support network (family) and with friends, she started to heal. She's much stronger now and I am thankful that I didn't let her wanting to just "give up" ever be an option! Persevere!