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.
Help spread the support to more people in need -- Please tell a friend or two. Thanks!
What's New Today
An anonymous caregiver said...
7 days ago
Hello! I am the primary caretaker to my 65 year old husband who has had COPD for about 15 years. He was given a prognosis of 6 months by his pulmonologist in June 2015. He put us in touch with hospice right away. What a Godsend! I attribute his still being here to the wonderful care he has received medically, spiritually, emotionally. They are an awesome support system for me too. My husband refuses to go to the hospital again for his COPD. He wishes to be at home when his time comes. He is a DNR. We have gone through 2 bouts of pneumonia, seizures and many exacerbations here at home this last year. Some days I get somewhat overwhelmed when he is so weak and out of breath and he will say to me, "Why doesn't God just take me" but this is a journey that we share with God and he is the one in control of the situation and it is all in his time. I continue to pray for his comfort each and every day. He is also diabetic. HIs last A1C was 14.3. Just can't seem to get it under control!
7 days ago
Hi Everyone! My Mom has advanced emphysema that she never told any of us about- we found out when she was taken to the hospital because she couldn't breathe. She was apparently good at hiding it since the doctors say only about 15% of her lung tissue is functioning and she hadn't been on oxygen. She has been on a ventilator since then (about 6 weeks)- first she was intubated and then they did a tracheostomy. She is currently in a long term acute care hospital where they are slowly weaning her off the ventilator. I think she is still a bit confused because she will ask if she's coming home with me today or ask where her watch is, but I think that's from being in a coma for so long. She has only been at the LTACH for a week and doesn't remember her 5 week hospital stay at all. What is the best way to help her out while she is there? She can't move her hands very well (they say she has ICU neuropathy) so it's hard for her to communicate since we are bad at lip reading and she gets frustrated.
17 days ago
My husband finally agreed to weekend respite at out local hospital so I could have a break. I was so excited but by noon I missed him terribly. If I feel this bad over a weekend away the grief will be unbearable come his passing. I know I need breaks but will need to find other ways to relax because I don't think I'll push for respite again
Kat 27 said...
29 days ago
Hello All, I just found this site after an exhaustive search for a caregiver support group in my area. It surprises me that there are none as I live just outside of NYC. I am a caregiver for my husband who is in stage 4 emphysema, oxygen 24/7, has a compound fracture in his 7th vertebrae, is having all of his upper teeth extracted currently, has an abdominal aortic aneurysm, etc. He has had emphysema for over 10 years but he has declined rapidly over the past year. I guess that means I am relatively new to this. He can still walk but is very weak since his hospitalization in June for an exacerbation. Reading over some of the posts here I think we aren't even in that bad a state yet and wonder what is coming... I have the same vacillation as others between compassion and resentment. We've been married for over 30 years but we've been very distant for a long time, my husband is a loner and has shut me out so being his caretaker has been emotionally challenging. I feel love for him and deep sadness at times with how he is struggling, and at the same time I am angry and resentful that he's done this to himself, and to me. He is ten years older than me, he never took care of himself in any way and continued to smoke even after he was diagnosed. I work full time and do everything else that needs to be done, around the house, and all of the medical requirements. But it is the psychological and emotional stress that I find most draining. It is comforting to know I'm not alone, and helpful to read other posts.
about 1 month ago
Well we moved my mom in 2 months ago and I'm just getting the idea of what COPD is and all the features that comes with it. As an added bonus my husband just deployed. To round it off I'd like to say I'm feeling really stressed as a new caregiver. We don't have kids, never felt the desire. Now I have my mom permanently. I'm barely wrapping my head around all that this is entailing. I'm trying to get her on to Tricare as an EFMP, but there's a lot of paperwork involved in that and haven't made heads nor tails of it yet.
I guess what I'm trying to say is I feel really mixed about this situation. All sorts of sad, angry, guilty thoughts are swirling through my mind. "I didn't have kids so why am I still responsible for someone elses poor life choices?" " Was this the best choice for her?" " Why am I being treated like a villain for feeding her and making sure she's ok?" "Oh look. Theres posts about going through all this Hell and whats even better is that I'm going to be so sad when she dies, which means this actually doesn't get any better does it?" "Why did she have to smoke?" "Is this revenge for my teenage years?" "I have no idea what I am doing." "I feel like Cinderella."
And its not just the COPD with her. Shes been disabled her whole life. Full body spasms, shes an amputee, and I don't understand her pain meds. So theres's all that other stuff I'm trying to figure out.
All in all I feel alone right now. As usual the army has taken my support group and put in in the middle east. And this is expensive, duh.
Then theres the slightly positive thoughts like:
"You know you're doing the right thing. You're her only child. She's a widow, There is no one else. You'd rather put up with her than put her in a home. You'll be less regretful because you took care of her and didn't abandon her. This is the best thing for her. You love her. She loves you. Yes you are going to miss her when shes gone but you already knew that. Its best to do whats right and take care of her. Its not that bad."
But its hard to listen to the Hallmark answers. A manual for this would be really great.
about 1 month ago
My grandma passed away last Wednesday. She was in stage four of her disease. She was at hospice at home for about 3 weeks after being released from icu. She was hospitalized for 9 days, on a ventilator for 4 days. When she got home, I was her caregiver, along with my other family members. I've having a very hard time dealing with her death. Idk what to do. I'm 28 and lived with my grandma while I was a child. She did daycare for my kids and we were super close. Idk how to deal with this.
about 1 month ago
I am a newbie to this site. Trying to talk to other caregivers of patients with COPD. My wife is now with Hospice but at home. She has severe COPD, CHF and Parkinsons. She has had COPD for a long time but this most recent exacerbation and stroke in March has led to all of these other diagnoses. She is 59 years old and I am having a hard time accepting all of this. Is there anyone that has their loved on with Hospice too? Thanks, Mel
Miss I like your shoes said...
about 1 month ago
I guess I am feeling disappointed and angry today at the very thought of having my mother being diagnosed with Emphysema/COPD. My mother was a smoker of the 50's and 60's when cigarettes were as common as a loaf of bread in the diet. Cigarettes were the most acceptable dietary supplement available in the 50's and 60's. Then in the 70's there were eventually questions raised about the safety of smoking.
As a child of the seventies, I begged my mother and father to stop smoking, but they never did. I am now an adult woman of 50 and have daughters of my own (15 and 19) .My oldest daughter suffered with problems with cigarettes in her teen years. Eventually, she saw a healthier way and realized that that was no way to live. Most of her influences and social contacts now were non smokers. Thank GOD! But my mother grew up in a generation of people who were perfectly within their right to smoke. they were men and women of the 40's 50's and 60's who had just came through a war, a depression, and a whole life of hard work and they earned it (the right and privilege to smoke) didn't they? In the 80's I just decided what will be will be ( Thanks Doris Day) and I just accepted that my parents would never stop smoking. I graduated high school and my parents sent me to college and then I graduated with a BA and got married. I had children who my parents spent as much time with them as possible during their young childhood years, and then my father was diagnosed with bladder cancer. His problems became worse and he died 4 years ago. My mother soldiered on and just recently she was diagnosed with Emphysema/COPD. She just buried not only my dad, but also her father too who died from end stage lung cancer and now all she wants to do is smoke and wait for her grandchildren to graduate and get married so she can have a big event to attend (Wedding and Graduation). My mother is perhaps the most self-centered person I know. I am angry with her and I am disgusted with her. I feel that she had the power to do something about this entire problem during the 80's and 90's and even after her father died from lung cancer and my father died from complications of bladder cancer, but now she just wants to ignore the writing on the wall and hope it all goes away. It's as though she really doesn't love anything as much as she loves smoking.
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