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
1 day 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.
2 days ago
I seem to have the most difficulty dealing with this person that vaguely resembles the man that I married on the weekends. During the week there are lots of distractions with work but the weekends just fray my nerves sometimes. I am really trying to be patient, understanding, loving, and thoughtful and most of the time life rolls on. Other times I get SO tired of our ENTIRE life being ruled by his COPD!
Most people that interact with my hubby don't get to see what this disease has done to him emotionally. He reserves that special part just for me. He has always been opinionated, but he has taken it to a level that I"m not real comfy with - borderline hateful and he doesn't seem to have any empathy or care for other people at all. I try to remind him that other people have problems, aches and pains, and difficulties too but he can't see past the end of his own nose sometimes.
I know I will get through it, this too shall pass, but I just needed to get it off my chest - again!
Tomorrow is a new day...
5 days ago
Hello, Everyone, It has been a few days since I have been on here, hope things are going well. We have been going to doctors appointments. The good news is she is plateaued at the moment, she is better than when we saw the pulmonologist in January since she isn't having an exacerbation. The bad new is that the pulmonologist told her that she is a ticking time bomb, so in other word's because she is still smoking at least a half a pack a day, that things could take a turn anytime and it won't be good. Her palliative care doctor had told her in May that she was just one infection a way from things getting really bad. So we are trying to just enjoy each day as it comes because we don't know when things are going to take a turn. I don't even bother saying anything to her about what she should and shouldn't be doing because at this point it is only going to cause friction and it is not going to change the outcome.
On a positive note when we are in the car I have Pastor Joel Osteen playing and she is listening and even laughing, who know hopefully one day soon she will have a relationship with Jesus and that will at least give us some peace about her eternal future.
I have finally found my place of peace and am just taking things one day at a time, I hope and pray the same for all of you.
I will say if you find that you need help, ask for it. It maybe through the Palliative care team, family or even friends, but get some help and don't feel guilty about it. Take some time for yourself, you still have a right to enjoy your life. I am here if you need me.
10 days ago
Hey Everybody, It's been another stressful week here. After my failed efforts last weekend to get my partner to go a wedding/reception, I thought there would be no way to get her out yesterday to a bon voyage party for a long-time friend who's moving to FL. I was wrong. I was happy to get her out but the amount of fussing it took made it not worth it to me. It wasn't a fun time for me. More like babysitting. I always hated that with children, but that can't compare to doing it now with my partner.
It was good for her to get out and I do think she had a good time. She was a bit self-conscious of the walker and oxygen bottle combo, but that didn't keep her from begging 3 cigarettes from people who all told her she didn't need them and that she shouldn't be smoking. She's not ok with walking on grass or flagstones especially in those flimsy shoes she picked out - that party was outside -and using her cane and no oxygen at the same time, so I dutifully took her to the smoking table and kept my watch on her. Fun fun. By the time I could wrestle her from the table the first time her lips were blue.
I probably worry too much. She'll fall again and I won't be there to catch her. But I'll pay the penalty by having to take care of her, won't I?
Then, the hostess was kind enough to put out all the yard flames. When the bugs returned, the little fires were lit again and I spent the time watching the distance between my partner and the flames all around her. Nervous.
She was so pumped up from the social time she had that she stayed up to 3:30am watching TV with it blaring. Refuses to wear her hearing aides. I called it quits before midnight and I really shouldn't have to go out after being in bed for an hour to ask her to turn down the TV. So I waited. Thought I could fall asleep as I was so tired but it must have been overtired. When she finally came to bed I was pissed and told her she was an F'ing rude person. I wish I coulda said it without the curse word cuz that made her pissed at me. Her solution was for me to sleep upstairs. Thanks for understanding honey! It's not all about you! But it is, isn't it?!
I hate, HATE, that none of her energy is directed towards me. It took me two days to get her ready for this party and there's no way I was leaving our bed. It was the only one with clean sheets. Thank goodness I finally got her to bathe and I could change them!
So, Friends, I don't know if you wanna call this post a rant, venting or just word vomit. I hope it helps me keep my sh*t together today whenever she gets up cuz I won't handle an argument very well. Now if I could stop the crying, I'd be great. Sad. Friends that you want to talk to in person or even over the phone have a hard time handling the emotions and then they seem to become scarce. Yeah, I wouldnt' wanna live this way either!
Hope your weekend was better than mine. Going outside now to play with the dog. Duty calls.
12 days ago
Hi everyone, My nieces and nephew are kidnapping me this weekend. We're staying at their camper so I won't have internet service. At first, I was a little apprehensive about going away for a couple of days but now realize that it's something I need to do for myself and something that Jim would want me to do if he were still here. I hope everyone has a great weekend. Hugs and prayers for everyone.
12 days ago
Good Morning Everyone, We started our day off with a deputy sheriff ringing our doorbell at 5:30 this morning. My MIL forgot to lock her car and it was broken into, this is the second time that has happened this year, the part that bothers me is that she is forgetting to lock her car, we have also had problems with the way she has been parking when she has to back up. I think we are probably getting close to having to take her car away from her, which is going to be really tough since that will be the last piece of her independence, that will be hard on her and that will also change the dynamics in my life because then I will have to start driving her everywhere and not just her doctors appointments. So today I am preparing myself for even more life changes. I hope she is beginning to realize that she is slipping and not getting better. She is still living in denial and I am going to leave her there till we go see the doctor next week and I will address my issues then. Over all though we have had a very peaceful week, just a few hic-ups. I hope all is going well for each and everyone of you, I have been praying and will continue to do so. Like I have said before I am here if you need me. Thank you for being here for me as well. I hope you have a great day.
14 days ago
Today was a really busy day for me, but a good day. I got a lot of things accomplished, had a good talk with my MIL and she is trying to change a few things. We will see, if not we see the doctor next week so we will discuss things then. I am concerned though because she isn't eating much and she has lost 2 more pounds, if she loses anymore she will be under a 100 pounds and if she has an exacerbation she will have nothing to fight with. The doctor has told us that we are only one infection away from things taking a turn and not for the better, so I am going to be keeping a close eye on her.
I know that we all have our trying days and that we come here to vent and I want to say thank you to everyone for taking the time to respond when I have had bad days, thank God we are having some good days and I am learning to not let so much get to me. It's been a long hard road to finally get to this place but thank God I am, I finally feel some peace.
Remember to take time for yourselves, you are important too.
14 days ago
Look out this is a rant! The day was ok until dinnertime.
I just can't stand being so domestic and feeling like I'm missing out on really living. I shouldn't have to cook twice in one day during the heat of summer. It is really really mean of me to request she eat cereal, huh? What did she think I ate for dinner? I absolutely hate cooking two different things for each meal so that much time at the stove and sink make me pissed! Most days I just go on and be nice and do it...but she's not an invalid. She really could get off the flippin' couch and do something to help. Anything. I am so ready to scream!
I can't stand ALWAYS, and yes I am purposefully using that superlative!, always the one to have to be sensible one and try to put my feelings aside to do for her. Why does she push me away so? I hate that! After I do, and I know she sees some of what I do for sure, even if she can only see part of what I do and only some of the time I spend doing for her to make her life easier, why can't she return just a little kindness to me? I feel like just leaving and not looking back.
Sure. Of course I'll stay. Even though she's pissed at me for suggesting something so simple and has locked herself away in our room and forbids me to enter, I'll stay. I might have to sleep in a different room tonight. I think I wouldn't mind, but it wouldn't be a restful sleep. The first time I did that in our long history was a week ago. I was mad as hell and very hurt. Guess what? That's the night I found y'all.
Nope, I can't run away. She runs away it's just so easy to ignore me. Any time the conversation gets to a meaningful point, she leaves the room! Twice this week already she's done it. Come on! We do have important things to talk about. I don't want to just take care of everything by myself. I shouldn't have to. If I did there would be hell to pay anyway, so I have to wait. And wait. And wait for her to settle down and I'll try again a different day.
I really hate my life just now. Totally miserable, I am. I go without to do for her. It is seldom realized, so when I am feeling used and can no longer bite my tongue, I pay dearly for speaking up.
How can a person dig their own grave by being too damn nice?!
16 days ago
We have before us another week of possibilities. Our loved ones could have the best week that they have had in a long time, out relationships with our loved ones can improve, we can begin to see them in a new light. I know that they have to be scared, angry, in denial and probably full of resentment and for us caregivers it can be very difficult to figure out how to help them, especially when we are feeling a lot of the same emotions. This week I have decided that no matter how my MIL decides to behave I am going to walk in gentleness with her.
I am going to share with those of you who have not read post I wrote several months ago that my MIL does not know the Lord, so she is walking through this disease with no hope, I have tried to talk to her just about what she does believe but she will not open up, so this week through my hands and my words I am praying that she feels and sees Jesus in me. I can't begin to imagine the fear that she has and I know that all of that contributes to her behavior, but I am the one in control of how I choose to respond. So, love it is.
I have to share with you that the more I come to this page to encourage each of you every day the more encourage I become, the more strength and hope I find to face each day. I hope this is helping you as well. When we look back over the time we have been given with our loved one, the memories that we have shared we have much to be thankful for. I know that each of us still has many tough days ahead of us, but through prayer, leaning on God and each other I believe this journey will be easier for all of us. Remember I am here if you need me. Have a blessed day, The sun is shining brightly here, it is hot and I am going to spend some time in the sunshine.
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