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
Jerusha James said...
11 days ago
It's been a couple of weeks since I have been on here. My mother-in-law has started smoking more, she is now up to over a 1/2 pack a day, she has lost more weight and told me not to call the doctor and ask about the medication he said would help increase her appetite, so there is nothing that I can do. Our daughter is going to take care of her for a few weeks so that my husband and I can have a break and we are going to Florida to relax and refresh so that we are better able to take care of her when we return. I have tried talking to her about things but she is so closed off, it is very frustrating. The advice that I have been given is to just let her do what she wants to do because I can't change anything. There are days when I just don't want to be here, I just don't want to do this anymore. She is to the place of expecting me to just do everything. I can tell for sure that I need a break. It just makes me mad that the doctors have told her things that she could do to make things easier but she won't do any of it, she is just being selfish, it doesnt matter to her how this is affecting anyone else.
17 days ago
Does anyone have experience about living on a ventilator? My husband is 73 yrs old and may have to be on one.......or not. We were told there is no hope that once he is on one that he will come back off of it. He does not want to discuss it, and I don't blame him for that. I will have to go by what he said, which is only that he doesn't want to live like that. Any experience would help me. Thank you.
24 days ago
I've had it with people that have this you owe me attitude. We were supposed to have a meeting yesterday with my husband's caregiver. She didn't show up and when she did return our phone call she used foul language and said she quit. So now we're back at square 1. I'm about ready to give up on finding a caregiver and go back to how we took care of things before. At least I have a hospice aid coming three times a week so if need be I will change where I go grocery shopping even though that store is more expensive
Jerusha James said...
25 days ago
It has been incredibly hard the last few weeks. We had to make some big changes with my mother-in-law and it was not easy. She has been living downstairs with us for 6 plus years and this past week-end we had to move her upstairs and in so doing it caused world war 3 because I would not allow her to bring her cats to move upstairs, so we found them new homes and she is adjusting to life without them. It was hard but I know it was the best decision. I have watched her health deteriorate over the last few weeks and that was confirmed today when we met with her pallative care team. Since January she has lost 10 pounds, the only time she does better is when they add a new medication to her routine. The doctor told her today that she is on a very thin line that if she gets an infection he doesn't think he will be able to bring her back from it because of several health issues. It was a sad appointment, but one that she needed to hear just how bad her circumstances are. She is still smoking and I don't see that changing until she physically can't get out of bed, the doctor told her that she was not far from being in bed if she didn't make some changes. She doesn't hardly eat anymore. I can tell we are on the downhill slide and it is only a matter of time before we lose her. She is entering a stage of depression and if she continues then he will have to add another medication. As it is we are at the place where we have to keep antibiotics on hand. This is such an ugly disease. They put her on Qvar and that has helped with her shortness of breath, but for how long. I honestly don't think she will make it till Christmas, I'll be surprised if she makes it through the summer. I noticed some of you ladies stated that your spouses aren't taking showers, I guess with women it is different because no matter how bad she feels she wants a shower, she just wears her oxygen 24/7. I am extremely tired and emotional wrung out because of all that I have had to put up with over the last couple of weeks, but with a place to vent I will make it through. There is so much more to the story of what is going on, but I don't want to keep going on and on, lets just say that here daughter will not come out to help us out at all, but our daughter does everything she can, now what is wrong with that picture. I take great care of my mother-in-law but she can't come spend some time with her own mother. I am not sure she will ever see her mother alive again, it's already been almost 7 months and she has the money to be able to come and see/help out with her mother every other month, but it doesnt fit in with her social schedule, excuse my french, but what a b___ch. I will end on that note. God help me because my sister in law is so stinking selfish!!!!!!!!
25 days ago
I am super frustrated! I'm not sure if I'm more angry, frustrated, or scared. I am trying to convince hubby that he should be trying to get the most out of life that he can while he's still alive but I feel like he's just given up. He doesn't like me telling the kids about his health issues but I feel like they should be informed. Hubby and I have always been close but this disease is killing him (and I) already. I still work outside the home and take care of virtually everything at home but when I have to do all that AND deal with his bad attitude and refusal to do anything for himself makes me crazy sometimes. I totally understand his limitations but I feel like he puts limitations on himself that aren't necessary.
Sorry for the rant...
28 days ago
Alpha1 testing. I mentioned the other day about having a blood test for the Alpha1 gene. Here is a link if anyone is interested. http://www.prolastin.com/en/hcp/free-grifols-alphakit-test-kits Our daughter found this because her clinic told her it's a $2,000 lab but here it's free. We felt both our daughters should have it just to be on the safe side.
Hope it helps someone.
about 1 month ago
Hi, I help with the care of my S.O. father. He has stage 4 COPD. I am at a loss because he is unwilling to help in anyway with his hygiene. He will wash his face and shave but refuses help with any other tasks. I feel he has a choice and if that is not to bathe then that is his choice. However it has been over 2 months. What should I do?
Load More Conversations