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
4 days ago
Husband came home from hospital Sunday. Receiving home health. His COPD is final stage, but not as bad as I think it's going to get before it's over. He's basically bed ridden now because of spinal problems complicated by 3 hospital stays since first of this year. His cognitive abilities are little to none, so he mumbles and fusses and scolds. He needs continual care 24 hours and refuses to go to a rehab nursing place to get help so he can function at home. He won't even let anyone explain it to him because he thinks it's "putting him away to die". He won't listen to me. I can't take care of him. It's near impossible for me. He weighs 275 lbs and has fallen 3 times since Sunday. I haven't had time to take a shower since Sunday before going to pick him up from hospital and very little sleep. Been sick with winter crud too that doesn't help much. I'm trying to hang in there for a couple of weeks to see if home health pt gets him to where he can stay home alone so I can go back to work. And if that doesn't happen, that maybe he'll become more open to getting the help he AND I need. I'm very angry with him for not looking at this according to what I can and can't do - he only sees what he wants. Every time I try to discuss it he yells and shuts me out. I feel like I'm stuck and can't do anything to help myself except leave him helpless and run away. Sigh...that's not an option right now. As much as I've worked to prepare myself for the inevitable that he will die from an exacerbation one day - right now, I wish that would happen soon, because this is like living in hell. I hate that I feel that way, but I do. I know when he does die, I will be sorry for thinking that way. God give me strength.
9 days ago
I'm Connie. My husband has had COPD for several years and is now in late stage. Most recent exasperation has put him in hospital 3 times since 1st of January. he's still there since last Tuesday. I work full time. That is the only income we have and our insurance. Haven't been able to work for almost a month. He is not only in and out of lung failure but passed out and fell and is pretty much immobile right now - needing someone with him constantly - which happens to be me - even in the hospital. I've reached out to Home Health Care with nurses and PT/OT but they barely got started. First visit by PT ended in them calling ambulance / a stay in ER then ICU and now in hospital. Been talking to Case Coordinators with hospital and my insurance and they are absolutely NO help. He refuses In Patient Rehab / PT. I'm exhausted and wonder if I need to quit my job and file bankruptcy to take care of him. From what I'm reading here this is just the beginning of a long drawn out battle of constant caregiving by someone who doesn't work full time. Is that what I'm in for?
9 days ago
Hi. My name is Carrie and I am new here. I searched this group out today because my husband has end stage copd. I have been reading some of the messages and can relate to alot he has 10% lung function and is on 6 to 8 liters of oxygen.He has had copd for awhile and last year the doctor wanted him to go for a lung transplant but my husband was not sure that was what he wanted so he put it off he is talking about it again now but has since developed a hernia in his stomache and I can see he has gotten worse with the copd., and to be honest I really dont think he would qualify for it anymore. but recently his moods are just horrible wants to start a fight over everything i try to choose my battles but there is only so much a person can take I try to stay strong but find myself stressing and crying all the time. And any little thing triggers him off sometimes I am just afraid to talk for fear of a confrontation and this is no way to live. He is 60 years old and has become very forgetful recently I'm sure that is probably part of the disease, I would realltyappreciate any and all suggestions to deal with this horrible disease
15 days ago
My husband has end stage copd. He has been doing well has not had to be in the hospital in a long time and had his an esterbation the ither day and has not had one in a while. My question is is normal fir him to have a dr jekel mr hyde personality? He can be very nice but tell him he is wrong or forgot something and he goes into a rage. And cries alot iver nithing. I dont inow how long i can handle this. This is not my husband.
15 days ago
I sit here in the hospital room watching my mother sleep and wonder if this is the last "go around". It feels like it might be, I have been scared and fearful before but this time the vice grip on my heart is unbearable, We have been battling this disease for at least 10 years .....all in denial of the fragile balance that must be kept and thinking each time she came home from rehab that we will do better...and then slipping into the old routines of arguing over stupid stuff, her not doing outpt physical therapy because she is ok and doesn't need it. Then in August her right middle lobe collapsed and she didn't "bounce" back like she had, slowly struggling through the holidays. After years of not decorating because she had either been sick or not feeling well I realized our time is growing shorter and decorated everything and she admitted it made her feel better. I planned a driving vacation for us to FL commence on my birthday in January (her O2 demand is too high to fly even on a POC), for her to visit an old friend. Sadly 6 days before our planned departure she exacerbated and wound up in the hospital for 5 days. The hospital was extremely crowded and it took 2 days before she got a real room so in my opinion they tried to wean down the steroids too soon/quickly and pushed her out the door to rehab but she seemed ok so I didn't push the issue, 5 days later days at rehab she dropped her blood pressure and her oxygen levels and wound up back in the hospital. Here we remain 13 days later, 13 days of a roller-coaster ride....good days, horrible days, status quo days. High dose steroids to help her breath, trying to taper them down because now her kidneys are showing signs of stress, O2 and CO2 levels all over the place. Sputum positive for mold so now we have to treat for that, percussive therapy and muco-myst to thin the secretions. Palliative care brought in and that is probably the only reason she is still fighting ...low dose roxanol has made a positive difference and seems to be keeping her comfortable and her spirits up. It is so hard to watch and I do my best to stay positive but the fear grips my heart so hard I feel like I can't breathe at times. But as long as she fights, I will too. I am selfish since I am an only child and we have no other family, it is just the 2 of us and I am scared to lose her though I know it is inevitable and I hate seeing her struggle. I am just praying that she can have a small bounce one more time to give us some more quality time....
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