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COPD - Page 2 - Carers UK Forum


For issues related to specific conditions and disabilities.
67 posts
Sounds like you are doing the right things to help your grandfather cope. It sounds like he has the right attitude to make the best out of his situation, which is also a good thing.
I know this post is a long time after the original but just wanted to add my comments. My husband has emphysema, heart failure and asbestosis and is slowly getting worse. We know what the future holds for him, and us, and it is not too promising. We cope really day by day as each day his condition can be different but wherever we now go he has to use a wheelchair. He finds the conditions that he has so frustrating as previously he was a very active man in both work and leisure but he does not want to give up - which helps me!!

We've been together for 26 years now and I am some 27 years younger than my husband and so some people said we would not last a year - we can now well and truly stick two fingers up to those concerned. Just wish we had another 26 years - but don't somehow thinks so!
Hi Janey,

None of us know how long we have, good thing I suppose. I didn't think my husband would see his 61st birthday, but now I believe he will make it and then some.

Good on you for proving the doubters wrong about your marriage!
good morning all,
although i joined some time ago, it has taken me a while to get round to finding this section!
my hubby has emphysema/copd and since november has had numerous doses of anti biotics. amoxycillin is on his repeat scrip but it turns out the infection he has isn't destroyed by this, so different a/b. he's now on another course, more steroids, different combinations for his nebuliser, and the seretide was changed from the accuhaler to evohaler to see if it worked better.

he is eating a lot more, so putting on some of the lost weight, will be having an assessment next month to do pulm. rehab again, but his state of mind is changing.

he misunderstood something he was told last year, and convinced himself he only had 2 years left! well, we got that sorted at the last hosp. visit 4 weeks ago, the consultant told him that he had to start getting out and about etc and he seemed much more positive. we went home for the wheelchair and coats, and had a few hours in Southport. good start, i thought, do this 2 or 3 times a week and he'll feel the benefit soon.

well, we haven't done it since! he isn't interested, which i put down to the fact he's in the wheelchair, which he hates, and now he just sits and watches the tv all day.

i can see depression beginning to set in, and i have no idea what i should do. has anybody else had to deal with this, and is there any advice that you can give? i would be very grateful.

many thanks for your time, Arrian
Hi Arian,

My husband is much the same, so no advice other than to give him gentle encouragement. Also, if he's not already on an antidepressant he might talk to the doctor about it.
My son does not have COPD but he does have Duchenne Muscular Dystrophy which is now starting to affect his breathing muscles. Robert gets chest infections and when these occur he uses a cough assist machine which really helps in geting the phlegm up. He also uses nightime ventilation in the form of a Bi-pap machine which is very helpful. He also needs it now after lunch (which takes a long time to eat because he gets breathless and tired) and after dinner (can take over an hour to eat and he ends up leaving a lot of it for the same reason as lunch). What is starting to worry me is that Robert was always a big, broad lad and he seems to be losing a lot of weight but when we saw the dietician she said he should eat little and often - how are we supposed to do that when everything he eats takes ages? He would spend hours each day just trying to eat! He does have a life to live.


Have you asked the doctor for something like Forticreme, drinks or nutritional supplements? There are powders you can add to foods which supposedly are tasteless too. Even a little tub of something sweet from the supermarket between meals would help, I'm sure.

My husband has lost a lot of weight because he too gets breathless when he eats, so it's a struggle for him, especially with anything that requires chewing. However, he never was a big eater or interested in food so with him it is extra tough. At one point I was feeding him, which helped. He's improved a bit recently, but I still need to cut his food up for him in bite sized pieces.
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
Hi Megan,

You might want to post in the new members area and introduce yourself to everyone! Image

... my husband still has COPD, of course. He's always been a cranky pill so I don't notice any difference when he's on antibiotics or steriods. (I read your profile info.) Many people get short tempered when they are unwell though and I suppose your husband is one of those, unfortunatley.
Hi Megan...

I too am a carer to my husband who has this horrible disease.....

At the moment we are awaiting the results of a biopsy as he has a tumour on the larynx...he is a high risk of it developing to cancer Image He also is very depressed as he is limited to what he can do!!! He loves his garden but this year we getting someone to do it for us...It is a big garden and i am not able to do it as i have neck &back problems..

Last year he went to rehab did exercises and learnt how to control his breathing if he started panic..there is a respiratory nurse that comes to see him once a month and he can get in touch with her at any time if needs be!!!! He has been in hospital a few times with bad infections, it's surprising how many people have this awful illness. hope i have not bored you too much but we are not alone and we can help one another with our experiences

67 posts