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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HI Everyone, I haven 't been on for awhile but check the posts every once in a while, It helps to know your not the only one going thru this. My husband is getting very mean, the last couple months have been very difficult i see the decline and he is getting angrier and angrier he lashes out in front of people for the silliest things, now he tells me your sister is not allowed to come to the house. she did nothing to him,AS i'm typing this the tears are flowing I just cant take it anymore I dont know how to deal with him there's no reasoning, he is at end stage with only 10% lung function, I think its actually less now< Could use some advise
I have finally made a decision to get my wife into a hospice care environment while the nurses that come to the house have been extremely helpful in this I am getting tired of the mood swings changing diapers making meals that never get eaten and trying to look after the estate of her late son I have lawyers in two provinces that I am paying and the demands are overwhelming me. This is not a decision I have made lightly because after 30 years it was difficult to take this step but I need a rest I just hope I am doing the right thing for both of us. Sorry to be venting but I think it is ok here as we are all frustrated with this terrible disease at one time or another in our lives. Many thanks to the ones who have helped with their moral support during the short time I have been here. I will continue to monitor the site in case I may be of help to others in the future
Hello! I have been a long-time reader of this site but this is my first posting. I am currently 33 years old. Long story short, my mom got sick about 10 years ago, developed severe depression, and was deemed disabled. My parents little clothing shop eventually bankrupted then and my dad became her sole caregiver and I became the sole provider at 26yo. I worked really hard... never went on vacations and never really dated and never really did anything else. 4 years ago, my dad died of a sudden heart attack and I took over both roles.
I have always had deperession due to a rough childhood (father was severely bipolar), but I was having actual suicidal thoughts at this point (later a therapist told me I was having “caregiver PTSD”). I asked my cousins in Korea to take care of her for just a year (with me sending money for her care each month) so I can take time to seek help for myself. It was a blessing and a curse because this is when I met my husband... but my uncle took this opportunity to rob my mother of all of the money my dad had left her when he died. Uncle has since disappeared so there is no way to recover any of it. It wasn’t much money... but I am 33 years old now and eldercare is extremely expensive - as you all know - and I was really counting on this to give me a little breather (a car accident when I was 28yo left a permanent injury on my back so it is hard to work a lot).
My mother came back to live with me and my husband last year... but I could not even stand to be in the same room with her. She was stubborn and had no desire to participate in any of her treatments. I realized she was no longer the strong and loving mom... when I took mom to see her therapist, her therapist took me aside and told me that I need to distance myself from taking care of everything and everyone if I wanted to save myself. My husband and I decided we needed a change - a complete change - that could accomodate mom’s care and also MY care.
We found her an amazing assisted living facility with really great memory care (my husband and I chose it because we said we wouldn’t mind living there once WE needed care - they encourage surprise visits - it always smells nice - the food is excellent). We took jobs overseas and cut our expenses severely to pay for it. We were gone 4 months and when we came back... doctor said she had dementia. I feel guilty that I didn’t call more often... because now she doesn’t even know how to pick up the phone. I know logically that I need to distance myself from her in order for me to survive... and even possibly start enjoying life and try being “young” for once... and finally talking about my story here (my friends feel bad for me but most of them are still receiving parental assistance - they don’t know how it feels to change your own parent’s diapers or when your mom doesn’t recognize your face)...
I think I curently feel most guilty about feeling a little bit freer.... if mom doesn’t know my face... doesn’t have concept of time... maybe I won’t have to check in every day to see if she’s okay... maybe it is okay that I enjoy my new marriage and life without obsessing over my parent (although I am not able to have children now... my body has been destroyed from stress.. and even if I could, I couldn’t imagine taking care of another human being any time soon)... I’m so sorry I am rambling... it has all been eating away at me and I feel like I just word vomited. Once my husband and I go back home (in Asia), it will be a 30hour trip (one way) back to see mom so I won’t be able to see her too often... I feel guilty because I am the only family she has left...and I feel guilty for wanting to live my life.... and I feel guilty for not feeling more guilty and terrible about the whole situation. I feel wrapped up in guilt and sadness but I don’t even know exactly why.
Jerusha James said...
about 2 months
I believe I am experiencing caregivers burnout and I am not sure what I am going to do. Respite care here is more than we can afford and I have no help. I am not sure what I am going to do. I do take her to the Senior Center a couple of days to have a few hour breaks. but I am constantly looking at the clock to see if it is time to go pick her up. I am not enjoying this season of my life and I have just had enough. I don't want to hurt my husband but I think it is time for his mom to go into skilled nursing because I just don't think I can or want to do this anymore.
Jerusha James said...
I have tried to keep a positive attitude, be encouraging to others but I think I have finally reached the end of my rope. My MIL has been losing weight so I took her to the doctor and he told me to just increase her calorie intake, and that she is just sitting on the edge. This could go on for a couple of more years or she could slide off the edge and it would finally be over. I have been doing this for eight years and I don't think I have another year or two left in me. I can only leave her for an hour or two at the most so I am pretty much tied down to the house. I don't feel like I have much of a life and since we don't have any help we can't even get away for a day or two. We had to cancel our vacation for September, most of my days look exactly the same. I have one thing I want my husband to get finished for me because it would help with my stress level but that keeps getting dragged out, you know for once, just once I would like to come first, you know to be the priority, but that isn't what happens, I keep having to take care of everyone else. I am tired and have had enough.
An anonymous caregiver said...
"WHAT IS GOING ON" Brother has severe COPD, he was in hospital for 5 days with pneumonia, in April, then back in hospital again with pneumonia for 9 days in May, Now today he was admitted again with pneumonia.
Pulmonoligist said my husband has full blown emphysema 24/7 oxygen and driving local truck. So he is going to apply for disability He walks a small distance and is wore out. Do you think that he could get immediate disability or wait 6 months. I thought maybe someone here has gone through this. Even with oxygen he tires very easily. He hasn't smoked for 7 years.
Stressed! I took some things to my brother yesterday, only to find out they are going to release him June 1st! Of course it is a holiday weekend! I checked out 2 assisted living choices. One would take every penny both of us make and more per month! He still can't walk (he is 200 pounds) and I can't lift him to the bathroom. The other will accept Medicare for 20 days, then $167.50 per day after that. I know things will work out someway, but I still can't help but worry what we are going to do.
Hey all, Well for once I am not bitching !!! yeah! My husband Dan aftr going to see his dr.has QUIT smoking!!! The dr made a remark that sunk in with him. He said :Dan if you want to see another year then put the cig down NOW, futhermore if you were to get a cold, flu or anything requiring a hospital I want you to know we would do nothing! Just make you comfortable. But no meds no heroics because if you are smoking why should we try to save you?"
wow blunt but the truth. He heard and listened. So now it has been 5 weeks and he does not eve act like he misses it. Me? I miss it like crazy. But I have to quit also ya know. anyway just thought I would share that with ya'll. Take care, Be strong and remember YOU MATTER!!!!
Hi all new here. My husband has emphysema and is still working but soon he will be disabled. Now has to have oxygen 24/7. He was doing better before getting pneumonia last Winter. His breathing has gotten worse. It is so hard to see him suffer everyday. His father had this same illness and he is in heaven now.. Nice to be on this group.
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