My partner of 38 years was diagnosed January 2014 while in the hospital because he couldn't breathe. I don't know what to do. He is overusing his oxygen now to the point he has CO2 Retention. He refuses to listen to me when I tell him he's using too much oxygen. He hallucinates all the time now and I'm afraid he's going to die. I talked with his oxygen specialist and all she says is, well, yes, he using too much but gives me no help. Just telling him he is overdoing the oxygen doesn't make him stop. When he screams at me and tells me he can't breathe I feel like I have no choice but to let him increase his oxygen level even though I know it's what's making him talk out of his mind. Does anyone have any advice for me?
Hi over using oxygen is just as dangerous as under using it. Get a medical professional to explain this to him if he won't listen to you.
Also tell him that oxygen doesn't help him breathe any better. What it does do it to support his other organs which can fail if his oxygen level falls too low. This is the reason why he was given oxygen in the first place.
As his organs have more oxygen he probably feels better and more able to breathe but it is an indirect result of the oxygen rather than the cause of it.
Overuse of oxygen is very dangerous and you have to make him understand that. Call a doctor out if he refuses to listen. x
Hi David I too am a retainer and I was warned not to go above 2L, I've always been on 2L but at times had to increase to 4L when active eg; showering etc but now I daren't increase . He's being very silly not listening to you but the health professionals should be insisting on this. It's awful when you can't breathe but he is making himself worse by doing this. Do you have a community nurse visiting? If so then ask her to explain fully the consequences and advise him. It must be very frustrating for you and I hope you get the help you both need. You are both in my thoughts, take care
I am so sorry to hear that your partner has to go through this. I could be wrong, but is he afraid or trying to escape (hallucinations)? It is very difficult to accept the reality that this disease is permanent. He may need to look at more positive things such as, rehab or future options, such as lvrs (lung volume reduction surgery) or lvrc (lung volume reduction coils) or lung transplant (only if he prefers). But, I think over using oxygen is very dangerous, and his doctor should talk to him, and make him aware of what under or over oxygen can do to someone.
I am wondering if he could feel better if he learned how to do purse-lip-breathing exercises? This is a practice type of exercise for the lungs and is done daily for at least about five or ten minutes, which can eventually cause a person to breath better by using their diaphram muscle, which is located directly under the lungs. I had rehab and they taught me all sorts of things, but this (plus using the stationary recumbant bike daily for 20 minutes daily) helped me greatly, and has been on my daily schedule ever since.
I was also informed that pursed-lip-breathing helps to lower that CO2 retention. I noticed it in my last blood test, it went down 4%, which was great for me, since my breathing was harder labored too before I began the pursed lip breathing exercises. Also, the acidity (chloride) went down in my blood due to the CO2 retention going down.
The recumbent biking at rehab helped my lungs by making my muscles surrounding the lungs grow stronger (plus the diaphram muscle). I felt a great different using the bike daily at slow speed (not resistance) for about 20 minutes a day. The recumbant bike helped also by making me feel more stronger, mentally and physically...it did such wonders for me that I purchased one for a wonderful price on Craigs list.
I no longer have to attend Rehab due to having my own biking and exercising equipment. My family, we never use our living room, because we never watch tv in our living room, since we have our own tv's in our own bedrooms. Because of this, we have recently turned our living room into an exercise room, and it looks beautiful, and we all love it, and use the living room more too!
Maybe you already know about the pursed lip breathing exercises and your partner has already been to rehab, but I just wanted to share about a few things that has helped me, and hoping it could possibly help your situation too. I realize we are all different and have many different situations too. But, when I was in rehab, the majority were just like me, and they all benefitted along with myself with these techniques.
Also, I have checked out, low volumn reduction surgery, and, low volumn reduction coils (which is expected to come on market possibly sometime next year). Sometimes I read on internet, or watch on You Tube videos, but it helps me to think optimistically, and realize that this world is full of hope and things can happen, who knows? I love reading about the later, coils, one since it gives me so much hope! But, I've also found it is best to not allow fears or anxiety consume us, and to think positively, since this also gave me sooo much strength too.
Take care, you are very sweet for taking care of your partner, since your partner needs you so much now!
Yhat's a dreadful situation you're in! If he won't listen to you would he listen to the specialist?
Or how about showing him your post? Would he read it do you think?
I don't understand the reference to you "letting" him increase the oxygen level: doesn't he do it himself? And hard as it must be for you, if that's the case it's his choice.
Can you get some support for yourself? It doesn't sound as if you can change what he's doing unless maybe you can do it calmly and with love when he's not out of his mind and hallucinating.
All the best and please let us know what happens
Hi David so sorry to hear that it a hard one cos you can see he problem
struggling to breath so your damed if you do and damed if you don't I it
was me try talking to his doctor and let him know or go to his oxygen
specialist boss or someone above them and see if they will help cos you
don't know if what he doing going to make it worse there my be
something else they can give him with the oxygen that will help him
Good luck let me know how you get on Susan x
Hi ,I am no health proffecional,nor am I onSupplementary oxygen ,but I do have copd and Bronchietis ,,,,so my theory is ,,,,,is it possible for the company that supply the oxygen put some sort of lock on it ,preventing over use , ie; setting at 2L .i have jo idea if it's at all possible but it might be worth asking if he won't listen to you ,oxygen will NOT help him breathe,,,,,also as I understand it once your diagnosed as needing suplymentary oxygen ,it's recommended that you use the the oxygen for 15 hours per day ,good luck ,
Hi David,
So sorry you and your partner are in this tough situation. And it is frustrating trying to help someone who is panicking because they feel suffocated and it is scary for you the caretaker to watch.
Your partner needs to learn to purposely, manually on his own power, use his diaphragm to force air out of his lungs. This is a war between allowing the disease to overtake you and you taking control over the disease. Over doing oxygen makes it worse and is quite dangerous.
There is no magic pill, and I am going to share some of what I have learned from 30 years of living with only 30% of my lungs left.
Here is what I was taught by a reputable specialist. Right before using any inhaler, rescue and/or steroid inhaler and during breathing treatments, exhale and keep exhaling until you think you are going to die and then exhale further.
Then inhale your medication, rescue inhaler, steroid inhaler, breathing treatment, and hold it in for the count of 12, then gently exhale. The idea is to get that medication as deeply into the lungs as possible, thus the long exhale prior to inhaling, and then keep it in there so it can do it's job, thus holding it in to the count to 12.
If your partner will bravely try this, it will bring him relief. Sweet sweet relief! It will enable him to find his deep breath. He must stop over using the oxygen because it is not the magic relief he wishes for.
If steroids are being used, not the inhaler kind, But the pills by mouth or intravenously, has horrendous side effects, and it causes a bad temper, angry out bursts, insomnia and bloating. But it is a valuable tool for breathing relief. I always ask for a sleeping aid for the duration of taking the steroids. Usually diazepam.
Another idea that has helped me is to stay away from eating dairy products because they cause mucus production and mucus is an enemy. The more mucus, the more coughing and the more suffocation feelings.
Also it would benefit your partner to find his happy place through visualization so he has a place to go when everything feels out of control, because becoming upset only makes everything worse.
My heart goes out to you both. All the way around, this is not easy. But the monster, COPD, can be tamed.
Warmest regards,
💛 Dawn, USA
Hi again David, the oxygen concentrator can be fixed at what ever level your partner needs mine is at 2L, mine isn't locked now as the lock was removed so I could change to 4L when active. I just keep a check on mine to make sure it doesn't change. Ask your oxygen supplier to set it for you. Good luck xx Julia
Afternoon david! Sorry I haven't replied to your question on this forum untill now I did read your question some days or nearly a week ago but was too tired to write at the time well here I am now! Have you had any luck since in getting someone to talk to your partner about the dangers off over using the oxygen! I hope so as its quite a serious matter & I think it really helps when there's someone else who can talk to someone who is stubburn & refuses to take advice not only that it would take a big weight off you & carers alike! Can you get him to your local GP surgery so someone their a Nurse or a Doctor can get him to listen please don't give into him as it could fall back on you if he was to die anytime soon lets hope not but you don't want to be getting your self into trouble I'm sure! I'm guessing he has a pulmonary specialist if he has it would help if He/She would speak to him there must be something that can be done perhaps they could keephim in hospital to observe him or a hospice or someone to come to you at home & keep a careful eye on him & give you support aswell or lead you in the right direction in getting help how about an advocate they are very helpful they can come to appointments with you at doctors ,hospitals jobcenter almost anywhere they are like a second voice they speak out for you very good they are I know as I hhave one! You can self refer your self just ring them up their number is 0800 011 6114 I don't know what area your in this is mainly for the city of London & hackney but they could direct you to an advocate in your area I hope this helps it's not nice for anyone going through this with a loved one! please keep us updated we are all hear tohelp each other! Wishing you luck with getting an advocate & hope your partner finally listens to someone if not you!
Very well said Jude. 💙
Hi Brenda, reading your message is a great help for me as a patient of this kind of desease. I learn to increase my hope by means of following different tips every one shared..Really this site is very helpful and I thank all people sharing their experiences here.
Hyper at, Thanks so much for info. He's IC
Brenda, Thank you, thank you for so much wonderful information. We go to the VA for treatment and the therapist has never mentioned pursed breathing exercise. I will definitely have them start that. May God bless you and keep you healthy and safe. You'll be in my thoughts and prayers.
Hi Jude, First, thank you for responding.
What I meant about oxygen level is that he starts screaming and yelling that he can't breathe. At that point I'm afraid his lungs are shutting down so I feel I have no choice to let him increase oxygen level.
He was just put in ICU for five days and now he's in rehab. However, while he was sedated in ICU I found his clothes they had put in a bag and when I went to get them I found sic cigarettes in a pack and six more butts in his pocket asking with a lighter.
Now I know why his breathing was getting so bad was because he was sneaking and smoking and I never had a clue because he must have done it while I was at the store or maybe doing yard work. He has always had an addiction on some sort, be it cigarettes, liquor, or drugs.
I am meeting with his care team tomorrow morning and I am not going to let him my tell them about his many addictions and that he desperately needs more than just treatment but counseling to help him to survive.
I can't believe he was able to hide the fact that he was smoking again. I never dreamed that he would ever smoke again since cigarettes is what gave him this disease to start with. Sometimes I think I want him to live more than he does.
How do you help someone when I guess they don't care if they live or die obviously?
Again, thanks for your concern. Dave
Thanks for responding, Susan. I will keep you posted.
Karen, Thanks for responding. His pulmonologist is the one who put his oxygen level at 3.5L at rest and 4.5l with exertion. I even told her on our last visit that he was turning his portable liquid oxygen level up to as high a 5l and she didn't say a word to tell him that that could cause CO2 Retention.
I am so glad I wrote on this forum because I have received such wonderful information to help me know what to do to get him the proper help he needs. I have gained so much valuable information from all the wonderful folks like yourself that now I feel I know what to do to get him the proper care that he needs. I'm going to demand another pulmonologist at the VA because the one he has is doing more harm than good. God bless you. I will be praying for you. Dave
Dawn, What great advice. I will definitely, with the help of his therapist, try what you have recommended.
You will be in my thoughts and prayers. God bless you. Dave
Julie, Thanks again. He is currently in a rehab facility and the have put his oxygen level at 2L. However, even though he's breathing okay he's still gallucinating from overusing oxygen. I am so worried he may have brain damage. Dave
Cecile, Thank you so much! I also agree, that I have also benefited so much from others on this site too. I am glad to be of help to you, and possibly others too. For me, the pursed lip breathing is probably one of my most favorite things to do, especially when panic try's to crop up within me, and, simply, when I can't breath as well, possibly due to having a sick-day, or not-feeling-up-to-par day. I think pursed lip breathing is powerful. Just be sure that when doing the pursed lip breathing to pull in the abdomen while breathing the air out of mouth part of it (forgot to add this to original post..sorry). Cecile, God Bless you and Take Care!