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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Jerusha James said...
I believe I am experiencing caregivers burnout and I am not sure what I am going to do. Respite care here is more than we can afford and I have no help. I am not sure what I am going to do. I do take her to the Senior Center a couple of days to have a few hour breaks. but I am constantly looking at the clock to see if it is time to go pick her up. I am not enjoying this season of my life and I have just had enough. I don't want to hurt my husband but I think it is time for his mom to go into skilled nursing because I just don't think I can or want to do this anymore.
Jerusha James said...
I have tried to keep a positive attitude, be encouraging to others but I think I have finally reached the end of my rope. My MIL has been losing weight so I took her to the doctor and he told me to just increase her calorie intake, and that she is just sitting on the edge. This could go on for a couple of more years or she could slide off the edge and it would finally be over. I have been doing this for eight years and I don't think I have another year or two left in me. I can only leave her for an hour or two at the most so I am pretty much tied down to the house. I don't feel like I have much of a life and since we don't have any help we can't even get away for a day or two. We had to cancel our vacation for September, most of my days look exactly the same. I have one thing I want my husband to get finished for me because it would help with my stress level but that keeps getting dragged out, you know for once, just once I would like to come first, you know to be the priority, but that isn't what happens, I keep having to take care of everyone else. I am tired and have had enough.
An anonymous caregiver said...
"WHAT IS GOING ON" Brother has severe COPD, he was in hospital for 5 days with pneumonia, in April, then back in hospital again with pneumonia for 9 days in May, Now today he was admitted again with pneumonia.
Pulmonoligist said my husband has full blown emphysema 24/7 oxygen and driving local truck. So he is going to apply for disability He walks a small distance and is wore out. Do you think that he could get immediate disability or wait 6 months. I thought maybe someone here has gone through this. Even with oxygen he tires very easily. He hasn't smoked for 7 years.
Stressed! I took some things to my brother yesterday, only to find out they are going to release him June 1st! Of course it is a holiday weekend! I checked out 2 assisted living choices. One would take every penny both of us make and more per month! He still can't walk (he is 200 pounds) and I can't lift him to the bathroom. The other will accept Medicare for 20 days, then $167.50 per day after that. I know things will work out someway, but I still can't help but worry what we are going to do.
about 1 month
Hey all, Well for once I am not bitching !!! yeah! My husband Dan aftr going to see his dr.has QUIT smoking!!! The dr made a remark that sunk in with him. He said :Dan if you want to see another year then put the cig down NOW, futhermore if you were to get a cold, flu or anything requiring a hospital I want you to know we would do nothing! Just make you comfortable. But no meds no heroics because if you are smoking why should we try to save you?"
wow blunt but the truth. He heard and listened. So now it has been 5 weeks and he does not eve act like he misses it. Me? I miss it like crazy. But I have to quit also ya know. anyway just thought I would share that with ya'll. Take care, Be strong and remember YOU MATTER!!!!
about 1 month
Hi all new here. My husband has emphysema and is still working but soon he will be disabled. Now has to have oxygen 24/7. He was doing better before getting pneumonia last Winter. His breathing has gotten worse. It is so hard to see him suffer everyday. His father had this same illness and he is in heaven now.. Nice to be on this group.
about 1 month
Hi all just when I thought nothing worse could go wrong the RCMP was at my door this morning. Seems my wife's only son had passed away from a heart attack on Saturday evening. And according to him from before she is his exectuter on his will. Now I have to fly to Ontario with a power of attorney to take over her position for his estate. I have to say if it rains it pours. The hospice team that visits our place has told me they will take very good care of her while I am away and the neighbours have said they will keep watch on her also. There are days when ranting on here are not enough support although I know everyone tries to help as best they can and I appreciate that so much from the room I am so glad I found this site is all I can say now
about 1 month
Having a very difficult time and just don't know how much longer I can do this. I wrote in here about two months ago when he burned his face blowing out a candle with the oxygen in place. I would have to get up a half dozen times a night for several weeks to check his nose and try to remove the scabs that were forming so he could breathe. This of course was in addition to everything else that I do. Thankfully he has healed up from that but I think it took a lot out of him and he is now sleeping most of the day in between watching tv, reading newspapers, eating, and going to the john. .
At the exact same time of the fire accident I had to have a biopsy procedure on my left kidney and it turned out to be a small cancer. The left side is also where I have a lower back condition. My urologist felt it could be successfully treated by cryoablation which involves inserting a probe under ultrasound guidance and freezing the tumor into an ice ball. I had this done the day before yesterday. I am so angry that in my time of need I received nothing. I had to spend most of the day at the hospital, so a friend came to stay with him. My neighbor drove me there and stayed to bring me home, thankful for that. But when I got home, still groggy from sedation, it was right back to the same old same old. You'd think the friend would have at least said something like here, sit down, let me make you a sandwich and cup of tea. (and we are paying this person.) Instead, dishes and leftover food were piled up, including his own coffee cup while he sits around drinking beer. He likes coming over because his wife doesn't like him drinking.at home. I am not supposed to be doing anything strenuous for a week but that is a joke in this situation. I have a home health aide on Thursdays only. I am just so discouraged that nobody seemed to give a s--t about me at all. I knocked myself out getting ready for my day at the hospital: grocery shopping, laundry, vacuuming, etc. etc.
Another real biggie is that he is going through the albuterol inhalers like gangbusters. I keep telling him to use the nebulizer more because it is the same thing, (and Medicare covers it) but he just accuses me of preaching a sermon. We had to pay for 3 out of pocket, and can't get insurance to pay until May 24. In the meantime he has almost used up the 3rd one. I don't know if they'll let us get more out of pocket but we've got to do something and soon. Do others of you run into this problem?
about 1 month
Hi Everyone, here’s hoping you are getting on ok...... as best we can. I have been reading though some of the posts and I have to say it makes me feel much better to know that others are going through the same thing. My Mum hand end stage copd, she is on oxygen 24/7 and is managing the pain with morphine. My Dad is her main carer and I go round every day after work and at weekends. I watch her every day fighting to breathe, and it is so frustrating that there is nothing we can do to bring her some relief. Yesterday she said she just wanted to go to sleep and not wake up.... Bless her xx I know that she has been fighting the copd for so long, always keeping positive, but just know she is tired of fighting it. My Dad is in denial that is it happening and keeps saying he doesn’t understand why she is not getting any better.. we have explained to him the illness and he has been caring for her, the hospice have been very helpful with explaining things to him, but he is one of those people who does not talk about his feelings. My brother just disappears when things get tough and my sister is pretty fragile too. I feel better sharing this, and wonder if anyone else is going through this that might be able to give me some advise..... I feel stuck between everyone ‘firefighting’ everyone’s feelings and trying to keep everything upbeat .... any advice would be gratefully received!!
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