COPD Support Group
Welcome to this online support group for caregivers, family, friends, and others with an interest in COPD care. Please introduce yourself - Ask for advice - Share your experiences caring for a loved one with COPD. Talk about symptoms, treatment options, side effects, daily life, your tips for others. Vent, laugh, and come back as often as you need to feel less alone. You can also find information that will may you manage financial and legal matters for your loved one in the Caregiving Money Matters Resource Center.
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What's New Today
An anonymous caregiver said...
2 days ago
My wife has severe copd last test she had, her fev1 was 18% not sure of the 6 min walk, BMI 30.47, BP 153/83, pulse 89 ,presp. 18 ,SpO2 93% she's on oxygen mainly at night and occasionally during the day several inhalers, she takes an antidepressant, and has refused lung transplant and was on a ventilator for 10 days back in 2010 she stopped smoking at that point until last year started back up maybe a pack a week.. Guessing. She's very moody, serve mood swings sometimes gets fiscal, agrues about little things, wastefully spending, buying very expensive dogs now have 6 and can barely take care of herself and I personally don't have time when I am trying to work and support the home. I am looking for answers on her over all health condition and any advise on her anger issues will be greatly appreciated... Thanks
Carly's mom said...
5 days ago
Hi everyone, mal went to the new pulmonologist and he is very good and thorough. He made some changes to the meds and told Mal he would begin to feel better. The next day he was in bed with sob, tight chest. he seems breathless all the time. does purse lip breathing 24/7., Has anyone talked to the dr. with out the patient being there? I cannot figure out if he is being overly cautious or really needs to be in bed. this man does nothing all day but sit. or lay. I cant get him to go to rehab. Meanwhile, My granddaughter is in swim finals in Rehoboth beach, DE. I have been invited to go with the family from the June 23 to the 30th/. I cant go with any piece of mind, because he hates when I am not here. there is no one else to help., And I am beginning to feel so resentful. I am missing time with my family because he is afraid. and I am afraid for him. I am so tired of feeling guilty and my family is upset because I turn them down. Did I mention the 2 dogs who have to be walked, or the fact that I am building a new business. Selling mobile homes, because his meds and oxygen and motorized chair and lift have cost a fortune. Sorry for the rant, but I just feel like I am going to explode. The last thing I want to do is make him feel like a burden. Any suggestions' will be appreciated.
5 days ago
Hi, my name is Michael and my girlfriend has advanced stage COPD. I am starting to feel alone and a failure as her caregiver as I have not been able to find any type of support. At times I feel totally overwhelmed just trying to get thru a day. There is always so much to do and at times it seems impossible to accomplish even the normal daily activities. I've noticed feelings of resentment and hopelessness lately. This is a horrible disease and I can't imagine how it must be to have it. I don't want to ramble on but it seems that no one seems to think of us. I never hear from anyone in her family about how are you or is there anything we can do for you guy's. The last time I spoke with her brother was Thanksgiving of 2014. They live about 6 hour's away. Not so much as a phone call. Does anyone really care or am I on my own. Feelings of isolation are not fun. I guess the old saying, out of sight out of mind are true.
8 days ago
Hello,my name is Adrienne. My father had COPD. He went to Heaven Wednesday April 13, 2016. I was his caretaker and I did not fully understand the disease as I should have. I am searching for a support group for my situation. I'm currently living in Fayetteville, NC...if anyone knows a group for me. I want to find a way to spread the word and awareness of COPD. I want the knowledge of COPD to be just as out there as is breast cancer and heart disease and other well known, widely spread knowledge of illnesses.
Carly's mom said...
10 days ago
Its been awhile since I posted. Mal was working 1 year ago and managing his copd. Now he is not working and on oxygen 24/7. he has been in the hospital 6 times in six months with a flare up. his lung capacity they say is 26 0/0. He is unable to do the simplest of tasks. walking from one room to another is taxing for him. we are going to new drs. tomorrow. We moved so we are going to a different hospital. Different drug regimen, they believe he was on too much. he is off the bipap, now takes 3 inhalers, theopoline(?) and up to 3 Xanax a day. He experiences tightness of his chest and sob. Now, I am seeing people with copd that get out and do things, work around he house etc, Mal can do none of this. He sits and watches tv or goes to bed, When he tries to do something, he shakes uncontrollably and cant breath. What is end stage? Will the dr. advise us when its time to prepare. I am afraid to leave him, and he is afraid when I do go out. I am not sure what I am asking, but does it sound to anyone that he it endstage and how long can one live like this? Thanks for any help you can give.
11 days ago
I am taking care of my mother since September she has COPD and a trach do to a very bad exaberation in January 2015 which she had to be sent to rehab facility 1.5 hrs from our home. She came home to live with me in September 2015. The first 2months were ok we were continuing on working on getting her walking again. She was able to use a bedside commode with assistance until December 2015 a 10day hospital stay were she was not allowed out of bed, when she came home we started to work on rebuilding her mobility. Since December it has been a week in the hospital a week home. Several bouts of pneumonia,mersa. And UTI's. As I sit here today yet again home for 6 days and the fever started Friday and the confusion is starting today and the weakness and the sleeping all day. I find myself feeling very alone in this even tjough my mother has 4 children who live a mile from each other and my home. I have a sister that helps me only because I still have to work for various other reasons. But I have her 24hrs a day except the 40hrs I am at work. I have a husband and 2 children also to care for. I guess my point is I am just looking for some support or others who have been through these last stages where it seems the Drs. Are no help.
An anonymous caregiver said...
15 days ago
My husband has COPD and he wakes me up every night coughing. The coughing can go on intermittently for up to an hour usually between 3-5AM. He has moved to living room at times but the cough is LOUD. HELP I need sleep. Any suggestions for getting a full not sleep without interruptions?
17 days ago
things r not getting any better seems moms in end stages of copd along with the pneumonia they want me to pull ventulater i did sign a dnr today but am opting to leave ventulater in for now her brain function is normal i cant bear to stop it her body is depended on machines but her mind is still there even though she is mostly sedated so decided to agree to the dnr that way if she gets bad again then she will go on her own and i didnt pull the plug does that sound wrong?
23 days ago
My father died sunday from what i believe was copd. He spent the last few hours coughing up redish phlem and saying how he couldnt catch his breath. I visited that morning and was concerned for him but he was in my mothers care at the time as always. I told her that they might want to go to the doctor and she said if it gets worse yhey would. After leaving them for 40 minutes my mother called and said that they couldnt revive him..he had died. Now i am torn apart. I should have taken him to the hospital and conveyed to my mother the severity of his condition. I feel guilty and at fault for not staying and not taking the right steps to help save his life.
30 days ago
My husband now is waiting for a nebulizer that he believes will "fix" his lungs and he continues to smoke. He is not the same person. He is making really bad decisions regarding financial things and does not want a divorce but wants to live out of the country with some locals on the island of st lucia marigot bay - they continue to use him - rip him off but he insists they are his friends. He returned home after being in the emergency room twice while there. He won't talk to me ..is angry...wants to refinance the house to return to these "friends" ... I am seeking any advice...medical...legal...and prayers are so welcome. This really difficult. He insists he does not want a divorce but his irrational thinking and behavior is so difficult. His anger toward me is so hurtful. Anyway just having a hard night and beefing to vent. I've said on here many times ...being the caregiver is not for sissies. Wish the VA had support groups for caregivers but they do not.
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