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
3 days ago
So today my husband had a follow up appt. regarding his last pulmonary function test which he did not do well with. I did not attend this appt. because he continues to smoke cigars - marijuana and depends on his nebulizer so he can continue to smoke. He came home from appt. and said he was told he in fact is in stage 4 COPD. He also mentioned that his "number" three years ago was 39 now it is "23". When I asked what numbers these were he said "oh I don't know." If anyone out there has an idea and could explain this to me it would be appreciated. Not to be insensitive but can stage 4 COPD last for years. He has no intention of quitting smoking and the only time he isn't smoking is when he is asleep which is most of the time. Know they have prescribed him 2 different inhalers and said he has become too dependent on the nebulizer. I know we are fortune tellers but I would like to know what I should prepare myself for. And no sugar coating please. Thank you in advance for sharing. H
3 days ago
My comments today don't really have anything to do with my partner's problems with COPD, but I do feel there are caring people on here. I'd really like to know how y'all might handle this... cuz I need some clarity. I'm too emotional.
We had a day of checkups and treatment at hospital yesterday that went remarkably good. We both were delighted with the outcomes and managed to have one of the best days in a long while. One appt. got moved up so that we didn't have to wait 2 hours for it and that let us have time to get a lunch out together. That was great cuz it's very hard to get her to leave the house for anything other than Dr. appts.. It took 4 hours travel time which makes a long day of dealing with medical.
Anyway, it was let out in the open by a new dermatologist, who had dutifully reviewed her history thank you very much, that she previously had 2 places that were treated for melanoma. One was almost 20 years ago and that was all I knew of so when I asked the Dr. if both cancer spots were near the shoulder where I knew she had major surgery, the Dr. gave a blank look and hurriedly said yes. She quickly went on to do her work of inspecting for new trouble spots and I'm glad to report there were none.
My partner offered a short time later that the second spot of skin cancer was on her thumb. She had told me back then - it was over 8 years ago! - that a man riding a scooter in the hospital had crashed into her and damaged her thumb so badly it needed surgery. I guess that was the cover story. She told me yesterday that she couldn't tell me the truth at that point in time because it was at the time of my mother's death and all that lead up to that and the ensuing sickness of my father that lead to his demise. I told her yesterday that I understood why she didn't tell me then from her point of view, but during the following loooooong time period why couldn't she tell me?
Am I not the one who takes care of her? Why wouldn't it be important for me to know this? Why wouldn't she trust me, indeed LIE to me and cover up the truth for so long? There have been sooo many times she could have told me. Her thumb tendon was damaged so the digit doesn't work well if at all so it causes her problems with holding most anything. That would keep it on her mind and the stress of hiding that truth from me was easy for her?
Today I am so down about her not telling me that she had cancer. I mean, CANCER! It makes me feel like I'm just the caregiver, just the driver, just the cook, yada yada yada. Nobody special to lean on or share these important and possibly life changing things with.
I would love to be able to say nothing and go on with 'I understand, Honey' but I'm pretty sure that won't happen. So....
What do you all think? How would you handle this lack of respect for me as her WIFE? We've been together for over 26 years now and I feel like we're falling apart at times. Anything you could say to help me through my feelings now might help us to keep the peace. We had such a lovely day yesterday and I was able to ignore this 'little detail' for the most part, but today I am left with my true feelings about it.
Thanks for reading! Love to hear your input!!
11 days ago
Today has been the worst day i have had in a long time. Some background is that my husband had a ruptured bowel in 2004 and spent 2 months in hospital, so now he is obsessive about having a bowel movement every day (It is thr highlight of my day)....he takes 2 senna pills every 12 hours and i give him a drink with benefiber in it and he has also been doing miralax a couple times a day. Yesterday he decided to also drink magnesium citrate.....He wakes me up this morning and he had shit himself in his sleep....he had walked to bathroom dripping shit along the way and in the bathroom it was all over the toilet, the doors, the floors, the walkin shower walls and floor and his shower bench... While i am trying to clean up the mess, he is yelling at me to get his inhaler, then his drink and then his pills ....oh and don't forget his bathrobe..and telling me i need to clean the toilet off so that i can arrange his bathrobe on it (he is now in shower sitting on the bench) oh and can i turn the a/c up so he doesn't get cold......
I got him cleaned up in the shower and sent him in his bathrobe to sit on couch....now mind you, in between doing all that i had done..I had cleaned the floor up and put his blankets into the wash.....I am trying to get a mop and bucket out to clean the floor better and he wants another blanket right now.......
After i get him situated, i start my day that I had planned which was cooking up 13X9 casseroles of his favorite 3 so that i have the in freezer for later meals.....I made beef stroganoff, tuna noodle casserole and a chicken casserole that has chicken, cream of mushroom soup, spur cream and stove top stuffing......I got him a drink of fruit punch and when i went to put it back in fridge, i spilled some on the floor....now i am on my hands and knees cleaning that up and he is yelling for his 2 PM meds...i said "in a minute"....git his pills and he said he didn't appreciate me snapping at him..
I lost it....I was yelling and swearing at him.....and said i need to get out of this house.....Well, today is his pill delivery day from hospice and is not allowed to sign for any meds..
I am sitting by the pool at the clubhouse where we live....i should have grabbed my suit....
This is the 3rd day this week that i have had to be at home all day for pill delivery(nurse is talking to dr to see if we can get a weeks worth of medicine at a time)..I have been in charge of his meds since april....they are kept in a lockbox and extras i put in the gun safe.
I have told him and asked his mom to come stay with him sometime in September so i can get away for a few days....She says "didn't you just go away this spring".....No the last time i went away and took a break was last October fir my brother's wedding. My neighbor who i used to have coffee with every day moved 2 hours away
It is so hard being in limbo and not being able to plan any future.....some days he seems better and then he digresses......
Sorry for the long one.....just had to vent
15 days ago
Something happened the other night that was very revealing about what my husband is going through....something i cannot possibly understand till i myself go through it. We have to sell our dream house we bought 5 years ago. We were not fully aware of my husbands condition when we bought it and it was to be our retirement dream. Its on 3 acres in the wooded country and he hunted deer from the front porch,We fell in love with all the critters that live in the yard, and loved the peace and quiet. But, its too hard to keep up now and we have bills to pay that only selling a house would pay. The night of the day it sold he became very upset and angry that we have to leave and he cried...Ive never in 30 years seen him cry. He talked about the squirles he would miss and the deer that ran through the property, and our gardens he will never see again. It seemed like he was letting go of his life and mourning the fact he was losing it. He talked about how i was in denial about how serious his condition is and that he did not have long and how horrible Copd is. I wanted so hard to comfort him and felt so bad about feeling sorry for myself and remembered he was doing the hard part. I actually fell in love with him all over again. Its like that song by Pure Prarie League That goes Amy, what ya gonna do, I keep falling in and out of love with you...................And that has been how my marriage has been all these years..............full of surprises and I keep falling in and out of love with him.. of course he threw me out of his room and told me not to come back till morning but, this time i understood.
26 days ago
My father is 84 and has had COPD that I know of since 2009 now he is stage 4 and the dr's said he had about 6 months to live. He is on oxygen 24/7 he just had his left lung drained of fluid. Now he can't keep anything on his stomach. He has always been a speaker but in the past year or more his speech has come to the point he can just say yes or no. He is real private he does not want to be put in the hospital and I can't get him to move up to GA with me. I really think the move would just bring death quicker. I have no one to talk to about this. I go stay with him on the weekend due to I have my own business in GA but if it is getting really close I want to be with him more. Can anyone give me advice on what I need to do. I don't want him to pass away and I am not with him.
26 days ago
Word of the day - INCONSIDERATE. I could leave it at that and y'all would probably relate, huh?
Man! I had a busy day and just wanted to go to bed early, say 10:30. Well, SHE interrupts and tags along to start a conversation about the awfully stressful day she/we had at the hospital the day previous. Why, why does she start this crap when it's obviously not a good time to do so? She was dead silent all day and most-likely stewing about what went on. Why talk now? Can't you see I'm going to bed?
That conversation got heated and no matter how I tried to calm her down and beg for mercy so I could rest, it wasn't happening. Where did that person go who always used to see what I needed?
So, the clock keeps ticking and the outburst happened so how was I gonna sleep? Agitated. I know I saw that clock at 1:30, 3-something, 5,6:30 sure, I'll get up and take care of the pets and struggle to get my morning time. Now that I'm SO tired I hope to keep my mouth shut about last night. Yes, I did complain that she was wrecking my plans for an early night but that kind of thing never seems to reach her ears. My needs, I mean. She always has more pressing things that need attention and usually with some impatience.
I'll try hard to not be grumpy today so we can get along, but right now I just don't give a crap. I feel hungover due to lack of sleep. Yes ma'am. Inconsiderate.
27 days ago
my husband has COPD and there are good days but the bad days he wants a divorce and says i should remarry right away so he can have all the social security money. And the next day its like nothing happened? Im 68 and he says i need to get a job. I haven't had a job in 25 years and live in a small town we moved to 5 years ago thinking we would retire here. He became sick right after we moved here so we put the house on the market. That was 4 years ago...........have you ever heard of a house taking 4 years to sell? Anyway, just needed to vent.
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