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COPD - Carers UK Forum


For issues related to specific conditions and disabilities.
67 posts
I'd like to hear from anybody caring for a person with one of the breathing difficulties lumped together as 'Chronic Obstructive Pulmonary Disease'. I know there must be plenty out there as it's a very common degenerative disease, especially in smokers and ex-smokers. It just doesn't seem to figure, though, as one of the horror stories told to children as part of Health Education, and I know that because although I'd been a form tutor for thirty years I'd never heard of COPD until my husband was diagnosed with it. His breathing has worsened to the extent that even reaching forward in his chair brings it on, and he can only walk a few yards. He is becoming incontinent, and most of his nutrition comes from supplements like Fortisip and Maxijul. One blessing that he is not affected mentally by the disease.

If there is anybody out there, please get in touch! - Celia
Celia, I'm new to the forum and noticed that you don't seem to have had a response to your post, although it was some time ago.

My husband has COPD amongst a range of chronic illnesses and similarly can now only walk a few feet. He also has heart failure, kidney failure and is an insulin dependent diabetic. The smallest exertion leaves him gasping for breath and lung function tests recently showed his lung capacity at less than 40%. Unfortunately my husband's mental state isn't good but I'm not sure if this is because of the depression he suffers from or because his brain is becoming increasingly starved of oxygen.

I too had never heard of the illness until my husband was diagnosed with it and I've become a rather fierce anti-smoking campaigner as a result! I only wish I'd nagged him more to give up smoking years ago!
Hello Liz - I'm glad somebody has replied to my original post. Yes, it's horrible to think that we might have been able to prevent this if we could have stopped them smoking, but it's not so easy, is it? I can't even persuade our son to stop, and he's seen at first hand what it can do. Our daughter has stopped, but mostly because she wanted to get pregnant (the baby's now five months old and she hasn't started again).

What kind of help do you receive for your husband? We have something called Inspire here in Lincolnshire and they do assessments, advise on exercises, run courses (he's too ill to go now, but they were helpful) and generally act as a resource. I'm sorry your husband suffers from depression too - that's doubly hard for you.

Maybe we could exchange practical tips on coping as well as moral support? do get in touch again.
I don't actually come on to the forum very often so not sure if you will even see this reply.
I care for my Mum who has COPD. She waiting for a lung transplant.
After a run of really bad infections Mum is now very limited to what she can do. She also can only walk a few steps and the simplist movement will bring on an attack.
If you do read my reply I would love to chat x
My OH had a Bullectomy last August. It's classed as COPD, picked up on a routine x-ray, it's a little known condition where the linings of the lung separate and fill with air. He was suffering repeated chest infections, severe shortness of breath, losing weight, constantly fatigued and he was very grey in the face. He became very depressed after surgery and is still suffering post op pain. He had his last cigarette the day he was admitted for the op.
Karen x
Hi Celia

Just saw your post, i'm quite new here so it's taken me a while to find this. My dad was diagnosed with COPD a few months ago, but had probably had it for years, just not diagnosed - officially! He is on inhaler's for his shortness of breath, but that's all they have given him so far, until it gets worse. I have had plenty of experience with COPD's though...did i really just say that? Image Anyway, i've had 4 family member's with Emphasima (sp), 3 of whom i cared for personally. Not sure if any of this is any help but pm me if you want to, ok?
Hi Alex,

I am not sure if Celia is still around, but I hope so!

I care for my husband who has severe COPD/emphysema. Finding it extremely frustrating because he will not do anything that is difficult - like pulmonary exercise - and he still smokes. He is on oxygen 24x7, virtually housebound, any trip outside means a wheelchair, he refuses to bath or take care of any personal hygiene because any physical movement is hard, is literally skin and bones because he does not like to eat, and his muscles are getting weaker and wasting away .... I could go on.
Hi Stacey,

That sounds familiar to me, seen 2 people that way. Big hugs for you, as i know what you're going through. The 2 people i cared for were my exes parents, his dad in particular sounds just like your husband. He still smoked every day, would just sit in his chair doing crossword puzzles and refused to do any exercise. He was on oxygen as well, had a big tank in the living room and a smaller one in the bedroom. They were removed after he passed away, then they had to be returned about 2/3 months later as my exes mum then became worse. They both passed away a few years ago now, but sometimes things stick in your mind that you'll never forget.

Sending you lots of hugs and best wishes Image

Thanks Alex. It's good to know there's someone else around who understands. Image
Hi there, My grandfather has COPD and its and awful thing to watch a loved one try and cope with it. He cant walk that far and it on oxygen 24/7. The only good thing is hes trying not to give up which sometimes is hard as he gets very frustrated as he cannot complete simple tasks like making a cup of tea. The drs have said theres nothing more they can do for him, its just trying to make his life as easy and comfortable as possible. He gave up smoking years ago but unfortunalty he also used to work with Aspestos which has made the disease much faster in progressing.
IT would be good to chat to people who are in the same situation.
67 posts