Hello,
I'm not sure if anyone is checking this forum, but I thought I'd post.
My wife has late-stage COPD. Smoked 30 years. Now wasting disease (she's 5-8 and 69 lbs). Wondering how to tell if there's a CO2 buildup. I know the pulse-Ox units add the CO2 to the O2 readings, giving a false good saturation.
Also, if anyone is dealing with cachexia (wasting disease), I'd welcome any thoughts.
John
Hi Deke. It never gets old saying, "One day at a time."
My wife passed away Dec 6th from COPD, Lyme and CRPS. In extreme pain, every day, 24/7, since 2011. The medical system couldn't help her with the pain, because with today's opioid hysteria, she was guilty until proven innocent. I'm very angry, and will be working to help others in pain. There's NO reason for the richest country in the history of the planet not to be able (more accurately WILLING) to manage her pain.
Please take care of yourself. That's what people are telling me.
Best
I understand my husband is in end stage COPD and is in total dementia and I am so frustrated I don’t know what to do. About 7pm every evening he just gets crazy.
He refuses Hospice and I have no family or support systemand feel so alone and don’t know what to do???????
I don’t know about CO2 ? What is that? My husband has end stage COPD and is acting crazy! This has been going on for 3 months since hospital when O2 was 42 and I called 911.
His doctor has recommended hospice but he refused. He is becoming almost impossible to take care of and I don’t know what to do????? I am have to work to pay the bills and am paying for home health care givers to take care of him while I am at work! But this not sleeping at night and turning on all the lights at night is making me crazy. He gets hysterical if I go sleep in another room but sometimes I just have to and let him scream. I feel guilty but what do I do?
Hello Jvdeb. CO2 is carbon dioxide. The body inhales oxygen and expels CO2. My wife was a "retainer," meaning she didn't have the strength to expel all of the CO2. It built up during one exacerbation, and almost didn't make it. High levels of CO2 cause delirium and confusion, and sometimes anger. For the past year or so before my wife died of COPD, I wasn't getting more than 3-4 hours of sleep a night, and even that was in short rests of about 30-60 minutes each. I gave her meds every 3 hours, around the clock (toward the end liquid morphine every 1.5 hours). I also had to help her on and off the commode due to a broken hip, about every couple of hours or so. So on a good night, the meds would coincide with the commode. That part I don't miss. I learned that in the real world, Hospice prepares one for death. They refused to treat anything. I once asked the nurse to check my wife's O2, and she said "what's the point? I don't even carry one." She said if she checked her O2, she'd be kicked off Hospice. They draw a strong line between pain relief and treatment. It shouldn't be one or the other. She suffered from untreated CRPS pain for 9 years. Only once in Hospice did they give her morphine. Are you income-eligible for a Medicaid waiver for at-home services? Here we have "Choices for Care," where we got help without her being in a nursing home. I would unscrew the lights at night if it's driving you crazy or pull the breaker. Just a thought. There are no easy answers here. I understand your guilt. I regret much of what I said to her, but I remind myself that I wasn't ok. I was getting psychotic. I also lost 40 pounds from not eating. I never NOT eat. I was dying too. People suggested that I not lose myself and practice some self-care. I understand that, but I couldn't get over the guilt of thinking about myself rather than my partner of 41 years. More than one nurse and doctor told me most men would have left her by now, but I couldn't, and wouldn't. You obviously need a break. Are there family members or friends who can help? Even for a few hours at a time. I'd look online for anyone...volunteers, who could come over. I know this probably isn't much help, but I wanted to let you know I hear you and understand (I think) what you're going through.
JDinVT, thank you for your response!!!! I have no family my husband has a daughter but she is of zero help and does not even want to see him. I am doing my best but feel so alone! No Medicaid - to high income. I can afford home health care while I am at work but that is about it. All my family lives in Maine, I’m in Tx. My husband’s family lives in South America, I offered to pay for his brother to Come help (he is retired- and went to Cuba to help with another brother when he was sick) but he has refused to come help me with my husband. ???? I do not understand this Hospice thing. My aunt was on it for 5 years and died at 97. My Dad was on it for a while after a major stroke and they were great but when he passed away the police came and made us all feel like we had killed him - counted the morphine pills... he was 83 and has 2 major strokes. I was with him when he died and he told me he was ready to go meet Jesus. Unfortunately my husband is an atheist and is very afraid of dying! I totally understand that but it is killing me watching him die. He does not seem to be in any pain, just dementia and crazy - which I have a very hard time with. I don’t know what to do with that.