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
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...
3 days 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.
10 days ago
I started to ask a question about end stage COPD but I decided not to. I have to remember the importance of living in the moment and not thinking about what's ahead. I will express that I sometimes wonder if my husband is avoiding sleep for fear of something happening. He's always been a night owl but I noticed that even when he should be ready to go to sleep, he's keeping himself up by playing on his phone. Guess there's nothing I can do about that. These things just pop into my head from time to time. Goodnight and God bless everyone.
16 days ago
I have set up a room for my husband on the main floor, we have a hospital bed for him. Last night he asked if I would sit with him until he fell asleep. I sat with him and cried, he usually hates it when I cry but last night he let me weep. And this morning Im still crying... The stages, the emotional roller coaster for caring for your loved one as they drift into death is excrutiating.
17 days ago
HI all, My name is Sindi (just like Cindy), I'm from Chicago. I am new as of now and I'm so glad i found this group. BACKGROUND: My situation is similar to most of yours. My husband is 67 (I'm 58) and he has end-stage emphysema (he was originally diagnosed in 2006). Cor pulmonale is present. He was also diagnosed with Stage III lung cancer (aggressive kind) in 2012. He underwent surgery right away and then had chemo. After the 3rd round of chemo, he went into respiratory arrest (while at home). At that time he still had not completed his end of life wishes. He was in a coma for 4 days. I thought it was over. The MDs said he wouldn't survive. I flew my kids in to say goodbye. The next day he woke up. So blessed - no brain damage. BUT, the recent chest CT shows a lot of nodules throughout both lungs and the oncologist said those are "probably" cancerous but they're too small to biopsy and why put him through that anyway. NOW: He's been in hospice (at home) for almost 18 months. He keeps hanging on. He sleeps most of the day, has very little or no appetite, lost a ton of weight, is severely depressed and has had dementia for the past year, which is getting worse every day. I, too, am exhausted both physically and emotionally. At times I feel guilty for wanting the man I married to come back. Dealing with the dementia is almost more difficult then watching his physical self diminish. He was once a brilliant engineer and now he doesn't know how to operate the remote control. Whenever he verbalizes, it either doesn't make sense or it's as if he's hallucinating. For the past month I've been sleeping in my office. Our master bedroom looks and sounds like an ICU room. I need complete silence and darkness when I sleep. Prior to that I was living on 3-4 hours of sleep per night (and I work full time). As far as respite goes - I have very little due to my job and taking care of him. Only one out of our 4 kids lives local (she visits every Sunday). The other three kids hardly call or visit - they don't know what to say - they can't deal with this at all. Our friends have stopped calling and visiting but he prefers it that way anyway. I, on the hand, feel very lonely and would love for our friends to stop by. I do get to see my girlfriends every so often during my lunch break from work ( i work from home). Sometimes I get so angry and resentful because of all the poor lifestyle choices he made over the years. We had so many wonderful retirement plans. Oh and coincidentally, he took a turn for the worse (when he went from palliative to hospice) when I was diagnosed with Triple Negative Breast Cancer (most aggressive). I was stage IIB - had chemo/radiation. I'm not trying to play the "woe is me" act - I'm just lonely, exhausted and I don't know how much longer i can go on like this. Does that sound selfish? Family members are suggesting to put him in a nursing home, hospice nurse suggests getting someone to stay in the house at night (what will that do - besides, he won't allow any strangers in the house to spend the night - he doesn't even let his friends come over. I can't give up my job - financially we're a mess. I'm sick of doing laundry and cleaning, I'm sick of going to the grocery store even though all those things get me out of the house. I just want peace, calmness, serenity, a night out on the town, go to a movie (haven't been to one in 3 years), a vacation and someone to ask me "what can I do for you Sindi?". The other worst part - I've been a nurse for over 30 years.
Soooo sorry for this very long rant - had to tell it like it is. I promise there will never be along post like this again. I guess I just let the flood gates open for the very first time (i usually keep to myself).
Sending hugs and prayers to all in this group and thank you for reading my biography!
19 days ago
My husband is at home Hospice care. His diagnosis was given in end of November doctor did not expect him to make it this long. He has COPD plus other complications. My husband is 84 and I am 61. This is the hardest thing I have done. I am sooo tired physically and mentally. One minute he is out of it other time in pain then a surge of energy hits then he is down again. I am stressed and even though so many people have come out to see us I feel very alone. How can deal with this painful time in our lives? I feel like I going thru a helicopter ride. Every day is a challenge. Help!
27 days ago
My husband came home from the hospital 6 days ago and I was advised he would likely not make it thru the weekend. He has and even shows an increase in strength. He is bedridden but converses and eats a little. He also gives me countless directions and dremands. Im exhausted. The doctors and home care support and I tried to convince him to go back to the hospital so I could get some respite. He absolutely refuses. Now I am exhausted and feel guilty
29 days ago
My mind is jammed up today. Feelings of sadness are trying to take over right now. I know its okay to be sad but sometimes it it feels quite overwhelming. My husband's doctor told us last Friday that it is time to start making decisions, getting things in order and deciding what he wants as far as treatment from here on out. She was so very kind when she told us and also made a point of telling me that if I get to the point of needing help, physically, emotionally, spiritually, she would make it happen. Ever since then we have talked a lot of what is ahead and that was okay but in the last couple of days he has been giving personal things away and doing things like cleaning out his desk, telling me how much I should sell his equipment for after he is gone and making sure that I know where things are. He was on steoids for 4 days so right now he is feeling good and his appetite is back for the first time in about 6 months. I know it won't last and so does he but we are trying to enjoy each minute we have. I looked at him today and thought "how can this man be near he end?" Thanks for letting me share. Sometimes spitting it out, or in this case writing it out helps.
about 1 month ago
My name is Terry . But latly i am called mama. By my own mother. I am 50 years old she is 80. She has copd end stage and any other lung or breathing disorder that there is. Shes overweight at 215lb and 5ft tall. She just recently took a fall resulting in a fracturd ankle and her opticular nerve was damaged and she lost all vision also. Making her completly blind. I take care of her at home we have at home hospice . i have to use a hoyer lift to movre her from bed to chair.... Buy she has become soooo demanding and if she calls for me if i idont come immediatly she will continue to csll me and cry out and begging snd holler nonstop . is it ok to just lett her fo this when i know she is ok .
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