End stages of emphysema. How much longer can this go on?

The original post is 4 years old.

From your description about the urine, he's not drinking enough water or it would otherwise not be dark. Have him up his water intake and he'll start feeling better.

As for the emphysema, it need not be a death sentence. No one really knows when they'll die of it until that time comes. Meanwhile, encourage him to keep up with his treatments and to drink more water and eat a healthy diet. It would also be a good idea to find some little exercises he can do sitting or laying down and get the blood moving better.

I had an elderly friend with COPD and he was given exercises but sadly he wouldn't do them and he ended up suffering needlessly because of his unwillingness to cooperate. There are ways to manage emphysema if you're only willing. You can get more out of life and the best of it by taking proper steps to make your life better

my mother has end stage emphysema and I am 63 years old and I am looking after her. It's hard, I am no Angel that's for sure but my mother has been a controlling person since I was a young child. She is really controlling me now and I wonder selfishly when my life will begin? I went to the doctor recently and they think I too have emphysema. What more punishment can I take. I am resentful and haven't seen my precious granddaughter in over a year. I am tired and pissed . I know I don't sound like a very nice person but I too have had enough.

I am in stage 3 male age 73 and it is just getting worse all the time to do much and I have been going to doctors for years about this however I am just wondering how hard of a death is it and will I just smother to death or maybe hospice can keep me from that sure would like some adivce and answers about this as of now I can still do light chores and just have to pace my self Thanks ahead of time for some help about what is up for me and don't have any phelm or cough just short of breath and restricted on a lot of things that I used to do

Also, he was officially diagnosed with emphasema in 1991, but had symptoms and probably started to be affected by it in 1985, so he lived with emphasema for 15 years before it took his life at the age of 60 in September 2000. I look at other people my age (37) with their grandparents if they are lucky enough to have them and think to myself, my grandfather would only be 73 right now and he should still be around, if only this, if only that. Now I have to worry about my Mom, the very one who cared for her sick Father. She has a hard time breating in winter and is out of breath and as crazy as it sounds, she smokes. She has been smoking for 27 years now, and she is turning 55 tomorrow and I hate to say it but she is following the exact same path my grandfather followed to his grave. I am desperately trying to get my Mother to switch to an electronic cigarette, which will still give her the 'pleasure' of smoking but without any of the harmful effects on her lungs. That's my advice to anyone with smoking parents or loved ones, buy them an electronic cigarette. I smoked myself for a few years long ago and I tried the blucig and it was exactly like the real thing. I am not a spokes person for their electronic cigarette but I have to say it really is like the real thing. Try to get your loved one who won't stop smoking, even though they cannot breath! to try the electronic cigarette. If this had been around back in the 80's maybe my grandfather would still be alive today. Good luck to you and god bless.

I have a correction to make, when he woke from being unconsious, his abnormal behavior was due to his carbon dioxide level (CO2) being too high, not carbon monoxide (CO).

My grandfather, who was like a father to me passed from Emphysema and he had asbestosis. His emphysema took about 15 years to end his life. As a child I lived with him in 1987 when he was in the early stages. He still worked as a carpenter at the time but every morning he would wake up coughing, not on his own but because of the phlegm in his lungs. Then he would sit for an hour coughing up phlegm, every single morning. This went on until he had to stop working around 1991 and my Mom came to WV and lived with him from then on. By 1994 he was on a nebulizer several times a day, an albuterol inhaler and Theophylline. By 1996 he needed a motorized chair to get around and could not go outside during the winter. That's a big sign of emphysema, the lungs close up with cold air so those with emphysema cannot breath well in extreme cold or extreme heat. By 1999 he looked like he was in his late 70's instead of late 50's. I decided to move to WV to spend time with him. I moved here in July and he was pretty thin, stayed in bed most of the day, was tired a lot, hardly ate at all and his bone structure had even started to change. By September he stopped eating and would only drink iced coffee, stayed in bed all day, rarely said a word and one day my mom went to check on him and found him unresponsive. She called me and I raced there and he woke up, but was acting like he had a stroke, it was actually his carbon monoxide level was so high that he was hallucinating. We rushed him to the hospital where they put him on a C-PAP with pure oxygen and after a day his CO2 level came down enough for him to regain consciousness. He asked what was on his face and my mother said its keeping you alive. He asked what would happen if they took it of, she said you will die, he said take it off, and take me home. She did exactly that. She drove 90 to 100 miles an hour home, was stopped by police, but the police took so long getting out of the car she took off. She yelled to him she had her dying father in the car and he wanted to die at home and took off over 100 home. That sheriff had the nerve to call later and I told him I would have done the same and don't you dare come here while he is dying and try to take my mother away because you will not gain entry and if you do it will be over this Veterans dead body, he hung up and never called back. She got home at 10 pm and I picked his barely conscious body out of the car and put him in his own bed with his dog and he never regained consciousness after I got him inside. My mom said on the way home she asked him if he hurt, he said no, she said are you scared, he said no. I can't imagine a more brave man then my grandfather and I believe every word he said was true. We sat with him until 3am holding his hand and talking to him of good times. It was very hard. The hardest was watching him take his last breath and the look on his face, a look of fear, but after he was at peace. We bathed him, put on his favorite pajamas, VA or Veteran pajamas, he was a very proud veteran. We fixed a piece of cloth around his head so his jaw would stay closed and a little piece of tape on one eye. It was almost morning and he only wanted his sister to see him, so we turned on the AC on HI and called her to view his body the next day. I share my story with you because I watched him suffer with emphysema for all of my life and I can tell you anything about it and I am also in the medical field and have studied pharmacology and internal medicine, so I can answer any question you have. So, if you see that they look like they have aged a lot in a short period of time, their skin color is off or mottled, blue and pink, they don't eat, sleep all day, loose a lot of weight, they are not urinating much and what they do urinate is extremely dark and thick, it's time. I feel for anyone who has to watch a loved one go through this. I cannot wait to see him again in heaven. The best thing you can do for a loved one is ask them what they want, long before it gets past the time when they can't make decisions for themselves anymore. Also, get hospice involved, and don't be scared to just call them and tell them what's going on, it might be time for hospice to get involved. My grandfather didn't need hospice because he had my Mom who is a nurse with him 24/7 and me who was a field medic in the Army and laboratory technician and studied to be a physicians assistant. If you have any questions about what's going on with your loved one let me know.

Cscstle: Hospice is the better choice right now, as they are trained to deal with end-of-life issues especially cancer. Best of luck to you and your mother.
Emphysema is a serious pulmonary condition. Pls consider an aggressive pain treatment plan. Again, good luck and God bless you both.

Thanks for your hospice encouragement. As for my mom understanding. I dont know. We go to the oncologist today. I'm hoping they will enlighten her and us. I will keep you posted.

cscstle, I am so sorry that you are facing this. Hugs to you and to your mother.

Please call in Hospice. It will be a comfort for both of you. They will see to it she has a hospital bed. They'll do or help you do whatever is helpful for the blisters. If she develops incontinence or weakness that makes it difficult to get out of bed or to walk, they will provide supplies and a bedside commode if that would help. As symptoms arise they will figure out a way to deal with them -- no cure, of course, but comfort measures. They can bathe her. I think Hospice is especially well trained and experienced to deal with cancer.

My husband died of Lewy Body Dementia. They were not familiar with that disease at all but I was able to give them information and they did a wonderful job. We only had them for about 5 weeks, because the final stage came on quickly and didn't last long. If his final decline had started earlier I would have called them earlier.

My father was diagnosed with lung cancer on a Tuesday; he died on that Friday. He was in the hospital for prostate surgery and wasn't recovering well and that is when the lung cancer was discovered. It was a shock to all of us, of course. In some ways that short notice was easier on us, in other ways it would have been good to have at least a little more time. But we get what we get. You've been dealing with already for a year. You have several more months ahead of you. Let Hospice help you.

Do you think your mother recognizes the fatal nature of her illness?

I recently told you all, my mom, has a spot on her lung. Well, it is confirmed to be cancer. No surprise to us. However, I have been doing alot of reading. Maybe not a good plan. But, I like to be a little informed before heading into a doctor's office. My mom has developed blisters, followed by some pretty ugly scabs, ALL over her body. I'm not exagerating either. They go from head to toe. Even her palms and soles. Its unreal. It developed after we had the biopsy done. I removed the bandage, they used for the needle mark during biopsy. I thought maybe she was alergic to the adhesive on the bandage. So, I didnt think anything about it. Nope, has nothing to do with that. I think its become an onset of the cancer. Anybody heard of "pemphigus"? Its an autoimmune issue. Her body is not able to fight any more. I'm wondering now....what does this really mean. Her primary has sent us to the dermotologist. I have two more days before I get her there. However, we have an appt with an ocologist tomorrow. I feel like he will discover and diagnose the issue. Then there will be no need to go to the dermatologist. From what all I have read and understood. The cancer has progressed more than we even expected. The spot on her lung was found 3/12. It was a 1.3 then. Couldnt biopsy because it was hiding behind a rib. So, in order to biopsy it, that would involve surgery. She was not a canidate for any surgery, dealing with the lungs. She could not pass a pulmanary test. So, the decision was to keep an eye on it. In 11/12 we did another CTscan. The spot has grown double, in 6 months. Now we are at a 3.0 and thats not even dealing with the other lung. Her primary has said the prognosis is 6mo to 2yrs, from point of find, without treatment. We are a year into that diagnosis. When talking to her primary....she says maybe she has 6mo. Which is what I was thinking. Now keep in mind. Im only reading, writing and asking questions as to be able to better prepare myself. I will never be ready to lose my Mom. But, I want to do what is right to keep her comfortable. But, now these blisters are coming up. They are horrid. I'm afraid she is at the stage of fight against fight. Her body is so not able to fight off the bad stuff. The good stuff is gone. So, with that said. I think we are looking at a way shorter timeframe than first thought. Does anybody have any input for me? Im trying to make decisions and its hard. My mom wants to be in control. But, she is progressively losing it. I dont want to be tough and sound like an ungrateful daughter to her. But, I think we have hit that stage of a huge turnaround. I would love to hear any and all opionions or answers. I pray and send many thoughts to this blog. I know we all need each other. I also dont want to take away from the original blog of phylllbug. I know they need answers too. I just hope some of this is helping others, as well as me.

I'm glad that others have advised you to call in hospice. That will help you both get through the end stage more comfortably.

For the patient with end-stage emphysemia, he needs a daily doctor's visit. The most important med is the continuous-flow Oxygen....four liters is correct..
The doctor should address the issue of the dark Phlem. Be sure to mention this. YOU can take care of the skin...break-outs from Lasix, and dryness from whatever. Apply prescription salve or ointment on the skin. For painful skin: Lidocaine HCL 3%. Repeat every five hours. Don't forget the hot-water bottle on the bottom of the feet.
I'm sure these questions have been asked and then aswered: Is he on a Foley catheter? or a Urinal? How many liters does he put out per day? How are fluids administered to him? IV, I hope. I would not worry about the broken hip. Did he have the Pneumonia vaccine? How long ago? How 'bout pain meds? Ask. Ask again.
You are in for a ride.....stand by with love and put yourself in his place if you can. Wake him up for meds, but don't try to keep him awake. The end will come when all he'll do is sleep. Bless you.

If she qualifies for hospice care, then they can provide the tough love care for you by
speaking to her. My mother was the same way, but somehow they always got her to do what I couldn't.

Thanks for your postings. But, I do have another question. I know my mother. She will balk at having someone come in to help. I would love it. Then they could help me around the house. Keeping up her end of the house. Maybe getting her to shower more often. Maybe they could get her to do her nebulizer. I am still the child, to her. She doesnt listen to me. I am tired of beating my head against the wall. I am at a loss. I guess now I'm going to have to pull the..."My house, my rules". Tough love is no fun.

I'm so sorry to hear you guys are dealing with this disease. My Dad actually was diagnosed at about 45, retired from Civil Service at age 50 with emphysema and died at 55 years old. Those were a rough 10 years, and I didn't realize how rough until later talking to my Mom later. (It's sort of weird how you can miss something right in front of you, but I was only 19 when he died...) From the situations you're describing, I'm sorry but I wouldn't expect any miraculous turn-arounds, and would be especially concerned with the weight loss that quickly and the skin color... The confusion and excessive sleep is from lack of oxygen. (They didn't even have that resource when my Dad was ill - I just remember him buying "Primatine Mist" inhalers all the time).Take care of yourselves and I agree with the advice to seek hospice care (although not all hospice workers are equal - a friend of mine did NOT have a good hospice experience with her husband, so...) I guess proactive is needed sometimes?

Hospice is an extraordianary program, it is funded through Medicare, most programs of this nature provide you with round the clock nursing so that if your loved one is experiencing physical issues they can come out anytime, 24/7 to reassess the patient needs. They provide C.N.A.'s who can provide bathing 3 xs per week, a spiritual care coordinator who can work with you and your loved one's end of life questions etc., a social worker who can provide emotional and an array of other support to the family. Hospice affords the family an opportunity to work together as a family to prepare for your loved ones end of life process. Good luck and Blessings to you and yours.

The answer to your question could be obtained by requesting that a hospice nurse do an evaluation. Hospice nurses are probably the best at helping family members understand disease progression. The other blessing with this evaluation is that if he is appropriate to be admitted to a hospice program, they are the best at ensuring his comfort and your peace of mind. Please as for this help as soon as possible.

Our 95 year old uncle never smoked and was in good health until about 5 years ago when he had a serious bout with pneumonia that resulted in him being in the hospital or a skilled nursing facility for six months. He then started having mini-strokes and began aspirating his food. He was diagnosed with COPD/Emphysema but is doing better now that we have him on a regimen of nebulizer treatments. Sometimes questions like this might be best off left in the hands of God because his condition did improve. Make sure you get more help from hospice which can sometimes allow for someone to be stabilized and relieve burdens on caregivers.

My grandfather passed away from this. I am so sorry. It will not improve short of a miracle. I could hear his horrible coughing all night long. Does your husband still smoke? Grandfather was finally able to stop at age 86 and it gave him a little over a year--but I am not a doctor.
You need to be sure you are taking care of yourself because you must be exhausted due to the nights.
Reindeermomma is so right. Your doctor can probably refer you to a hospice. If not call one yourself and tell them everything. They will be completely sympathetic. My prayers are with you.

Sadly, no one can probably give you an answer as to how long, it could be days, weeks, or even months. If your husband is not on hospice, I would check into it now.
They can really help. Him as well as you. Hang in there. I know when they linger it makes it so hard on the family, but yet when they are gone you want them back.
Hospice is covered by Medicare. Hugs to you.

I would like to know what you find out about this. I am the caregiver of my mother. She has some of the same symptoms. However, her issues only start there. We just recently found out, she has a spot on her lung and liver. We havent even addressed the liver. But, the spot on her lung has more than doubled in 6mo. She still continues to smoke. But, for the most part, she spends her time going from bed to chair. She goes to bed for oxygen. Chair for smoking. Appetite is at a minimum. Social life is at zero. I know things are only going to progress downhill. I just want to tag-team with phylllbug and find out what is in store for us to deal with. I love my mother and I just want to make her comfortable. Thanks for any help.
phylllbug, I send my prayers and thoughts for you and your husband.