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
2 days ago
My mom has COPD! She is in stage 4 and been hospitalized 3 times in 6 months. She has never been married and it falls on my 2 sisters and me to take care of her. I live closest to mom, so dr appts and daily needs fall on me. I am sad and angry all at the same time. Does anyone have any suggestion on dealing with the stress?
2 days ago
New to the group, thought I was going crazy until I read through some of the comments and saw that there are people out there just like me! My husband was diagnosed with COPD in 2015, he's smoking twice as much and drinking lots of alcohol every day!! I also have custody of my 3 yr. old granddaughter. I am a small business owner and work full time. There are days when I think I'm going to go nuts! I feel like he's being so selfish and just doesn't care about any of us. When I get home from work everyday, he's sitting on the porch smoking and drinking, waiting on dinner. He's never really helped much around the house, now he uses this as an excuse. He even told me the other day that he wished I had COPD. I'm finding it very hard to feel sorry for him and I sometimes I feel like it's his own fault that he feels so bad. I've begged him to quit smoking and drinking, but he yells at me and tells me to shut up! I feel like giving up at times and just walking away, but try to focus on the good things that I still have in my life. Most days I dread going home in the evenings. I'm just so tired!! Oh well, enough of my rant. I'm glad I found this group, any advice or words of encouragement will be greatly appreciated!!
10 days ago
Today has been a difficult day. My husband is irrational confused and argumentatve. He kept insisting his oxygen wasn't working even though I showed him over and over again that it was working...at one point he took a pair of scissors and cut his oxygen tubing. I am having him admitted to the Hospice care center tonight as he has become a threat to himself and me. He went outside to smoke a cigarette with his oxygen still on......he went into the master bathroom trying to go outside....I have a heavy heart but am so tired
10 days ago
Yesterday I went to church because I just needed the peace that I receive when I am there. Now I know it was a mistake. I wasn't able to sit quietly and listen for God's voice and the peace I feel there. People kept coming up to me and telling me how sorry they were and hugging me even though I just sat there with my arms crossed or they would rub my shoulders. I even told a few of them not to touch me because it wasn't the right time that I just needed some quiet time. Did they listen? Nope! I understand that people want to console others when they are in pain but honestly, they should ask first because maybe that person that is upset just wants and needs the quiet time. All week I had been bombarded by phone calls and people coming over to check on me. If that was a taste of what this coming Saturday is going to be like I'm not sure that I want to be at my husband's memorial service.
11 days ago
My husband is in end stage copd. We are having hospice care in home but almost all his care falls to me. He is on spriva, simbacort,and Ventolin inhaler. He is also on long acting morphine pills every 8 hours, liquid morphine every 4 hours, Xanax every 4 hours. He also has RA, spinal stenosis, 2 prior heart attacks, a prior bout with prostate cancer. He has been on oxygen 24/7 for 4 years....In 2004 he had a ruptured bowel and spent 2 months in hospital.....We were married in 2002 before all the problems so basically I have been his caregiver for 13 years. He is at the point where I cannot leave him by himself at all. He gets mad at me because I am a sound sleeper and don't hear him call out in the middle of the night because he was in the bathroom and was thirsty and wanted me to get him a drink......I am exhausted....... I try and keep a good attitude and laugh about things but I am so tired...I feel like I am between a rock and a hard place because if I put him in a home then they will take his social security check which is our income right now
14 days ago
What hurts me most is that my husband smokes unashamedly. How can he not feel guilty? How can he go into gas stations and buy cigarettes with an oxygen mask on his face? Why doesn't he care? His not caring makes he so angry and sad. It also makes me not want to stres myself doing for him. Like this morning I'm sitting on the bed relaxing. He starts coughing and sniffling and expected me to jump up to get him tissue.. I'm just tired of him treating himself and our family ike this. Just tired. Just tired.
18 days ago
My husband is on a very high liter flow of oxygen. It' hard for him to do a lot for himself without being exerted. Still, every day he pushes himself get dressed and get out of the house for a few hours. Sometimes when he's asking me and my son to do things to help him along, I want to suggest that maybe he needs to stay in. But I don't because that daily outing is what he needs to maintain his sanity and feel like he's still living. It's scary watching this routine become more difficult for him. With the July 2016 prognosis of the doctor's who estimate that my husband had maybe a year left not far from our minds, it's hard not wonder is this the beginning of his decline. I can say for my husband that he has a strong will to live. Not a strong will to follow doctor's orders like go to pulmonary rehab, get monthly blood checks, do breathing treatments everyday, sleep with his Cpap machine, but he says often that he's not ready to leave here. He doesn't want life to go on without him. What I don't understand is why he won't try harder to improve his quality of life by doing what he should do. Maybe he's scared it won't help so he figures why bother? Nevertheless, I do what I can to encourage and help how I can but the ultimate decision is his. But when I read stories of caregivers dealing with those final stage, when the spouse is actually dying is when I get really scared. Like is this how it's going to happen for us and wonder how I will feel about his ambivalence about managing this illness. I just pray that his death, if it is to come in the near future, is not days, weeks, months of agony for us.
22 days ago
It's been crazy around here. My husband has taken a drastic turn for the worse. He was able to go downstairs until a few days ago, now he's bed bound and barely conscious. When he is awake he is confused and sees people all around him. I told him that they are angels that are waiting to take him to heaven and then he looks at me and asks why am I subjecting him to this torture. So now he is now receiving haldol and morphine every four hours around the clock. I'm exhausted but can't sleep.for more than an hour or two and even then it's a very light sleep. Our daughter who is expecting is now in the hospital awaiting the arrival of our first grandchild. My husband told me that when he gets to see his grandson he will be ready to let go. On one hand I'm really excited about being a first time grandmother but on the other hand I am angry, sad, frustrated and a hundreds other feelings that I just can't put words to. I now that the end is very near but my mind doesn't want to accept that I am losing my best friend and soul mate. My heart has accepted it and I am told that is half the battle. I should try and get some sleep while I can and have noticed that I am starting to rattle on so I'm going to go. I hope everyone is doing ok.
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