Can carers phone the copd nurse for a... - British Lung Foun...

British Lung Foundation

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Can carers phone the copd nurse for advise?


My husband is the one suffering from copd. He seems to sleep for 18 hours a day, just getting up to take his medication and carton of ensure and then back to bed and then a few hours later will get up for a few hours. He gets extremely out of breath when brushing his teeth, so wont do this anymore, has the most basic of washes, refuses to go out incase he gets out of breath. I keep asking him to phone the copd nurse and ask to be assessed for ambulatory o2. Problem is, he was told he retains carbon dioxide (think its that) and so prescribed oxygen wont help him. Think he should also be referred for PR too as he never exercises on his own accord.

Really at a loss what to do. What a life, just staying in bed, hardly eating, little personal hygiene, drinking too much wine. Would drive me insane.

13 Replies

I am sure they will be glad to help you.


I had to sign a form at the Doctors so that I can have all information and things can be discussed with me. I have found this very helpful when my husband has been very ill and he has been incapable of speaking to Docs. Perhaps the BLF helpline could give you advise - it might be worth a call. Good Luck TAD xx (PS I have found our practise nurse very good at helping me)

Hiya Gocat.

Having COPD can at times be a terrifying ordeal and deep down hubby is probably scared. I get scared too. To understand him properly get three straws and pop them into your mouth. Now put a clothes peg on your nose and try to breathe. You can breathe ok? Now do something. Walk upstairs, make a cup of tea. That is how hubby feels but of course he can't take straws out of his mouth as you can. I am not trying to be hard on you sweetheart but if you haven't got COPD it's hard to understand the terror and anxiety it can bring.

Bobby xx

If the patient does NOT give permission then the nurses cannot share info with you. However, there is nothing to stop you sharing info with them! Give them a ring and tell them why you are worried. It sounds as though he is giving up. I have been there. He has to fight a little - not always comfortable when things are severe, but necessary. Good luck. xx

I have COPD, I'm a CO2 retainer and I'm on oxygen, so your husband is wrong to think he cannot have oxygen at all. The levels have to be assessed carefully as too much oxygen would be counter productive, but I do think it is worth finding out about.

I agree with everything Toci says. There's no reason why you shouldn't share your concerns with your husband's nurses. I also agree that he needs to fight a little, but I know that tiredness feeling too. Maybe you could ask about treatment for the CO2 retention. I have a BiPap machine which I use overnight and it has worked wonders for me.

Good luck whatever you decide to do, Jan :-)

CornishBrian in reply to jabber

Oxygen will not help some sufferers no matter at what stage they are at. I can be completely breathless but my sats stay at reasonable levels. The oxygen is in my lungs but my lungs can't use it. I would think that your hubby may be severly other facet of any long time illness, especially as you say wine is involved. I would try to get a pulmonary nurse or doctor to the house and go from there. Good luck.


Hi gocat, yes of course please don't hesitate, as Tadaw mentions phone the BLF helpline about your concerns Mon-Friday 10 am to 5pm 03000 030 555.

Being out of breath doesn't necessarily mean a person needs oxygen, being out of breath doesn't mean you can't do things, rest recover and carry on. I get breathless all the time on exertion but I still get out and about. Check with the GP or respiratory team that cares for your husband and ask if he may be a candidate for pulmonary rehabilitation also ask about accessing the occupational therapy team to get husband assessed.

Best Wishes BC

HI there My husband has had COPD for over ten years and this last year has been very bad for him, and we havn't had much help over the years, but at last something is being done for him hopefully it's not to late, he has just finished PR which helped him understand his condition a lot more and I went with him so that I could understand it as well, I know that he is the one that's is going through all the pain but it is very difficult for the carer as well seeing them go through it and they do take things out on you as well, he finds it difficult to wash and struggles to get dressed, but if you can get him to see someone and get him on PR he might see that life is worth trying and he might just try to get out and enjoy himself in little ways. My husband is not on oxygen either as he recovers well after resting so he might not need the oxygen just yet. I hope they can sort something out, and fingers crossed, my husband is in hospital at the moment, he is having a heart procedure at 10 am this morning so hopefully things my be a little better for us as well then. Regards.

Toci in reply to badham

Hope everything goes well for your husband today Badham. xx

Reading all the above I know just how us wives feel. We are scared stiff too, we see the life we have shared for - in my case 54 years - ending up with a loved spouse giving up and despite all the care and love we give them they can't/won't respond. We TRY to be positive, we realise we are there to help but it is increasingly harder when we look to the future.

Love to all who share these thoughts with me, Brenda

Thank you so much for thinking of me, if everything goes ok today, he will then be in hospital again for 2/3 weeks for his lungs this time so they can give him iv.'s and work out a plan for his treatment. So fingers crossed. At least something is happening now all thanks to a wonderful hospital at last.

thanks for all your replies. Hope all went well for your husband today badham.

My husband was told each time he has been hospitalized of which last time was about 18 months ago that having 02 at home wont help him as he retains carbon dioxide. Just thought having 02 for short bursts e.g. before and after he brushes his teeth, have a wash, eating etc would help him. to do these things without getting so breathless and motivate him more. Each time I have called an ambulance the crew are suprised he is not on home 02.

Wow just read this post I put here 4 years ago. What a difference now. Hubby has oxygen due to being prescribed Phyllocontin which kept the cardon dioxide retention at bay. Doesnt drink alcohol anymore. Personal hygiene ok. Rarely goes out still but doesnt seem bored indoors. Plays the guitar a lot which was something he had given up on. Has normal sleep pattern. Such a difference. :)

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