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
The caregiver that was supposed to show up this morning so that I could go to church today sent me a text message at 5:15am this morning saying that she wouldn't be able to make it because her stomach was bothering her. She happens to live down the street from me and I noticed that her car wasn't there. I was angry for a little while but then just looked at it as another day that I got to spend with my husband. The past two days have been really rough on him. He's been asking for the morphine every two hours. He was barely able to make it to our dining room table which is no more than five feet away from the couch. My sister has been bugging me all day about how he is doing but when I ask her to come over to give me a break she has nothing but excuses. Then gets upset with me because I don't stop by her house when I do have a chance to leave the house. I've tried to explain to her that I have very limited time away and that I use that time to go grocery shopping and to stop by church so that I can pray and receive advice from my pastor or recharge my spiritual battery. Sometimes I just want to scream.
3 days ago
how do you deal with wanting to just get away and how do you know how bad off your spouse is? My husband has very severe COPD and is on 4-5 liters of oxygen 24/7, he is able to somewhat take care of his daily needs with some assistance from me, but is always SOB unless sitting. I just feel guilt from wanting to get away for 2 days or so.
4 days ago
My name is Anna. I have been taking full time care of my husband who has end stage emphysema. He was diagnosed with this disease in 2003-2004. It has been in the past year that he has been in a steady decline. He is now in hospice. There are some days that I get a fleeting glimpse of the man he once was and then it seems as if there is a stranger in the room with me because he becomes very confused. He is now taking morphine and lorazepam as a part of his daily medication routine. Our daughters live out of state and the family members that do live close by are not supportive in any way so the counselor from hospice suggest that I look for an online support group because there are no support groups available in my area. Sometimes I feel so alone. So it's helpful to know that this group exists.
13 days ago
Hello all, my husband was diagnosed with COPD/Emphysema in 2014. He has had issues longer than that but he is now disabled. We have dealt with primary care doctors so far but he has an appt. with a pulmonary doctor at the end of the month. He will have another lung function test at that time. His last test showed Stage IV of the disease. He also has a sleep study scheduled for Mid May, that is required to be considered a candidate for oxygen therapy. I am thankful to have found this group.
Jerusha James said...
14 days ago
Things with my mother in law are changing. I took her to the doctor today because of shortness of breath and they ordered a new breathing test to be done, they also said it was time to move her upstairs, which she isn't happy about because she will have to find new homes for her cats. They added an inhaled steroid on top of her daily dose of prednisone. She has also lost more weight, so the decline has begun. We go see her palliative care doctor in a couple of weeks to address some other issues including depression which I am fairly certain she is experiencing. We are suppose to go on vacation the first of June with our daughter taking care of her while we are gone but depending on how she does between then and now will determine if we go, I hope we can because I really need a break, this has been a long 6 years with her living with us on top of my daughter and grandchildren living her too, I am worn out. We are going on o try and wait to move everyone around until we get back but I don't know if that will be possible. This is a hard and stressful disease straight from the pit of hell. It is horrible watching them lose the ability to really live life, at this point my mother in law is just existing each day. God help us all.
16 days ago
Has anyone experienced the death of a loved one with COPD not come after multiple trips to the hospital because of exasperations? The doctors told my husband July 2016 that he had maybe less than a year to live but she didn't give any indication of what he could experience. He hasn't been admitted to the hospital for an exasperation since he was diagnosed with the lung disease in 2015. Just wondering if multiple hospital stays are always part of the life of lung disease patients?
An anonymous caregiver said...
18 days ago
My father is 63 and suffering from COPD. I do not know the stage. Doctor has advised to take one inhaler and he is continuing the same but he is getting weak day by day. Now he is not willing to walk even as he is losing his strength. He has hemarroid problems as well. He takes a little amount of food and does not drink a good amount of water. He is also taking sleeping pills from lat two years. Please suggest how to make his health better and prevent COPD to worsen further.
21 days ago
Last night my husband slept with his oxygen connected to his cpap machine plus an additional cannula connected to another oxygen machine. He said he needed more. He was very weak. Though he knows he needs to sleep with his cpap on, he rarely does. But when he does, he sleeps so peacefully. I was nervous about him going to bed at the same time as me--that's not usually the case. I feared I was going to toss and turn with him. Thank God, that wasn't the case. Still I"m concerned about his need to use even more oxygen than he already does. I asked the doctor about it and they said it was okay, temporarily. I just wonder if that means his lungs are worse or if it could be a minor exasperation. He has times like these where doing minimal activity, like sitting or walking to the kitchen and back to the room can wear him out and he can hardly do anything. These instances have only lasted, at most, 2-3 days, and then he's back to normal.
One thing about my husband is that no matter how bad a day he's having he musters up the strength for his daily outing. He says he's not going to let the struggles keep him stuck in the house all day. I guess this is a good thing. He doesn't know how much longer he'll be able to get out on his own so he doesn't want to miss a day. I get that. It's just hard to tell what is really going on. And I don't want to be asking him all the time about how's he's feeling. I don't want him to think that I'm worried about the future. I try to live as though we don't know how much longer he has. Honestly, we don't. However, the doctor's prognosis of one year or less to live back in July 2016 is not far from either of our minds. He has a palliative care doctor but was told that he actually qualified for hospice care. He doesn't want that. He doesn't want to see the palliative doctor again. He didn't like the feeling of them preparing him for death. I agree that the service doesn't feel very proactive. They're just about pain management. Personally, I'd like a follow up but it's not my call.
I feel like I'm rambling. Good night.
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