Husband copd: HI I am new to this... - British Lung Foun...

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Husband copd

Dancing60
Dancing60

HI I am new to this community but I was looking for some help or information, My husband was diagnosed with cope about eight years ago, he has had bad times and good but he is stubborn and although diagnosed and given inhalers never really received much help from anyone, I had to keep going to see the doctor and nurse to try get them to check him till eventually he started seeing the cope nurse every now and then the nurse says he is quite good but its different to what I see he has lost weight has no muscle in his legs they are so thin he wakes in the morning and I can only describe it as like a fish gasping for air he sits on the bed and barely has any energy but they say he is stable, he is depressed a lot of the time and home life has completely changed from once a happy home to a silent miserable one, he has terrible mood swings where he blames me for everything and turns into someone I no longer recognise I am just lost I don't know what to do or who to ask for help I do everything I've tried speaking to the nurse and doctor but they say he is fine but I can see he isn't and he's a lot worse than how they see him I no longer know what I can do, I just wondered if anyone could give me advice Thankyou

17 Replies

Hello and welcome. I am so sorry to know you and your husband are having such a difficult time. I don’t really have any good answers, though someone will soon reply with helpful suggestions. When the nurse comes, do they see your husband only fully dressed? If he’s wearing multiple layers of clothing it will make him appear bulkier and heavier than he is. Have you told the nurse everything like you just told us? It gives a full picture of the situation. Unfortunately often ‘being fine’ is based on numbers, and if the nurse is just seeing his oxygen levels and heart rate etc and if these aren’t bad, to them he might be deemed to be fine. It makes me so sad reading your post, because it’s horrible to watch someone you love be so ill, and to become someone else in front of your eyes. We hurt the ones we love, maybe because we don’t want to hurt those we don’t know, or we know our loved ones will forgive us, or we’re just lashing out irrationally. It’s so hard. I’m dismayed the doctor is just saying your husband is fine. Can you see another doctor? I am so sorry I can’t make things better for you, but at least here in this community you can get lots of support and advice and friendship and a place to be.

Hello Thank you for your kind words, my husband wouldn't see a doctor for ages I had to ask the doctor to call him in when his depression got so bad , I am doing everything at home and always find myself alone now as he hardly goes out I feel lonely and miss the person he was the doctor told me she can't do anything unless he wants to help himself so I got him to go along we ended up argueing in front of her as he was saying he is ok,he then saw the nurse who said he was fine they gave him drinks to help put weight on and look at me when I ask questions like I'm interfering he had blood tests which they said he was borderline diabetic but apart from that were ok, I just can't understand I watch him everyday struggling for breath wLking up the stairs closely coughing none stop, and I keep thinking they have got it wrong that there must be something else they are missing I was watching the videos on here and people seem to cope and carry on with daily life but my husband sleeps a lot and has no energy I don't mind caring for him I'm his wife but I don't know how to get people to understand how ill he is sometimes.

Hi & welcome,

Two things spring to mind: has he attended a Pulmonary Rehabilitation (PR) course?

Most here will have attended at least one (I've been to two in 6 years) to teach/remind us of the illness, how to cope with it, how to live with it and how others have to live with us having it - it might help him understand it better.

The second thing, you say he wakes gasping - just wonder if he might also have sleep apnoea? Worth asking the GP to be tested or, you could start with the Epworth Sleep scale (Google "online Epworth sleep test") which will give a clue.

Hope these help - good luck and best wishes

Dancing60
Dancing60 in reply to y_not

Hello yes he did attend the rehabilitation class for a couple of months, he seemed to do ok, I will look up about his sleep, he is terrible in the mornings he also has terrible headaches , he just seems to have no energy but Thank you for the information.

Hidden
Hidden

Your GP surgery are not managing your husband’s condition satisfactorily. They have a duty of care towards him in which they are obviously failing. He needs more expert help to give him a better quality of life and management of his condition.Look on the internet for a good copd consultant in your area. Take the name to your GP and insist on a referral. If they try to refuse insist by saying that you are not satisfied that the treatment the he is getting is helping him and that he and they, need an expert opinion.

Do not take no for an answer. Too many GPs are lazy and mean with their budget and I am shocked at how many copd patients have never seen a consultant.

GPs are just that General Practitioners. They know a little about a lot of things but their real job is to act as conduit to source and fulfill expert help for their patients. I urge everybody to use them this way.

Dancing60
Dancing60 in reply to Hidden

Thank you and you are right I feel the same nobody is listening or giving him the correct treatment the only time he has seen a consultant was when he was first diagnosed he hasn't seen one since, I think he needs referring and I will have a look at the doctors in my area Thank you

Hidden
Hidden in reply to Dancing60

Good luck. Do keep us up to date

Hello Dear, Your Post made me weep. I agree with Littlepom, Far too many Lung Patients are not being assessed Properly. Is your Hubby with a Lung Consultant ?, it is imperitive that he is, Then the Consultant can arrange, X.Rays, Lung Function Tests, Blood Tests to see why he is Losing weight. At The beginning for me , I had to change my GP as the first useless lot lost all my Documentation and results, once I changed, and The Reason Given, My New GP arranged a Respiratory Nurse to Visit me, Then things started to happen for the Best. Please for your own sake , be strong Hun, you have to Demand that your GP Refers your Husband to a Consultant Immediately. I wish you the strength to act and be there for your poorly Hubby. Love n Hugs Sweetie. xxxx

Dancing60
Dancing60 in reply to Hacienda

Thank you so much I feel so lonely at times and don't know what to do for the best if I question anything he will shout I tried seeing the doctor myself but it hasn't helped as I keep being told they can't give me the information I have been in tears so many times and had a breakdown last year as I just couldn't cope. anymore I was just so tired as I do everything now he hasn't seen a consultant wife being diagnosed eight years ago but I think he needs to be checked as he worked in a lot of dust and chemicals ,Thank you for replying it helps to finally have advice.

I also look after my husband who has severe emphysema and know only too well what you must be going through emotionally, watching the person you love change, lose their health and become thinner and weaker.

It's so hard for them to maintain a quality and zest for life when they're feeling so ill but there are ways you can get help which will make you both feel better .

You have been given some good advice above such as asking your GP to refer him to a consultant at your local hospital for an accurate diagnosis.

They willl also check his medication.

Does your GP surgery have a COPD respiratory nurse that could see him?

Ask your GP to refer him for Pulmonary Rehab which is partly exercise and partly educational so he can improve his fitness and learn more about his condition.

My husband was referred by his consultant to the Sleep Clinic and given a ventilator that he uses at night and this has helped his oxygen and C02 levels. It sounds like your husband may be helped by one.

If he's losing weight try to get him to eat as much nourishing food as he can. There have been lots of posts about this. It's been a major problem for my husband as he's lost lots of weight and muscle tone but he hates the nutrition drinks he's been given. Fortunately he's managing 3 meals a day at the moment.

In the meantime you take good care of yourself too and keep posting and let us know how you get on.

Best wishes

Corin

Hi Dancing60

I agree with the others that he needs to insist on seeing a respiratory physician for tests and a proper diagnosis. Maybe the consultant would then make sure he’s on the right meds for the ‘type’ of COPD he has. and be referred for pulmonary rehab where he can relate to others with the same condition and get to know how to make things easier /better for himself. From what I presume it gets you interested in COPD and how to tackle it. I’m waiting for an assessment to get on it myself.

Lack of exercise and activity can also cause someone to deteriorate with COPD. Exercise is key for anyone at any age with COPD as muscle activity produces oxygen.

It’s not easy as we all know on here having this dreaded illness on you mind all the time. One of the tricks is to try as much as possible to be around others and socialise whenever possible as depression can make things go downhill.

Please get him to see a respiratory physician and take the note you have written so well here so that he can address all the issues.

Best wishes to you both. Please keep in touch . Chris

Dancing60
Dancing60 in reply to Chriskho

Thank you so much

The advice given above is good but I would say that this is a situation where your husband also needs a good talking to by a man. (I'll call any man a pig-headed, stubborn fool if that's what he is.) :) There are certain things he needs to hear to get him fired up and out of his depression. And there's the problem. I could write it down but will he read it? And is he likely to react negatively knowing that you've reached out on here?

I'll write down some thoughts today and send you them by Private Message lest any sensitive types on here are offended. :)

Oh, and do you know if his copd is due to smoking, work-related hazards, or something else?

x

Dancing60
Dancing60 in reply to Lantyrn

Hello my husband doesn't know I have joined this site, he is stubborn he likes to keep everything to himself I don't know what is his cause of cops, he smokes more now than ever but he also worked as a damproofer he hacked a lot of plaster off walls and sprayed a lot of chemicals so this may also be the cause. I think his depression is causing him to smoke more he always says the cough is due to the fact he has a cold or chest infection I told him to throw them in the bin Thank you for replying.

Problem with COPD we need to move more but because it is a struggle to breath we sit around a lot I had a major op last year took me months to get walking again but found a stores shopping trolley helped to keep me on my feet & breathing was better as my arms where stretched out in front. Still get days where it is a struggle but keep going on Town Rider twice a week for an hour walking round shop. Could your husband do some leg exercises in bed or chair also if he is having mood swings is he depressed ? XC

Doctors are notoriously poor at recognising that chronic illness can give rise to depression and all the other symptoms that go with it: irritability, losing interest, excessive tiredness, etc. My COPD is not that bad yet, and I've never smoked so I don't know where mine came from, but I have had chronic prostatitis for 23 years, and the pain from that made me very depressed (and still does!). In fact, I've probably spent the best part of £20,000 on unnecessary private surgery, when a lot of the pain was probably caused by stress. Antidepressants don't seem to agree with me, but I do know some people who have been helped by them. I've tried hypnosis and mindfulness, which I think help a bit; it's all about accepting your condition, not fighting it, but not letting it rule your life either - this is a difficult balance, and I wouldn't say I've got anywhere near there yet, but it makes sense to me, at least in theory. I've had to stop doing things I previously enjoyed, but I try not to feel too bad about it and do other things instead - sometimes I can't do those either, but try to believe I will at some time in the future, and that is generally the case (nothing in life is truly constant).

Your husband's smoking sounds like a typical compensation mechanism - he needs to find a less destructive alternative. Oddly enough, over-eating would be a good alternative in his case, because low weight, whilst good for everything else, is bad for COPD. I'm very aware of this, being naturally very thin and trying to put on weight! But, given your current situation, I suspect this might be difficult. You might both benefit from some psychological counselling. It can help put things in a different perspective: you can't cure COPD, but you might both be able to live better with it.

I do hope you find a strategy which helps you both cope better in this difficult situation.

It may be your husband would benefit from a change of inhaler. I was hospitalised for bronchitis in November last year; on discharge they changed my inhaler to Duaklir Genuair, which didn't agree with me at all - the medical professionals wouldn't listen to me and told me to persevere with it! I lost a lot of weight (2.5 stone), couldn't sleep and my breathing deteriorated drastically. I couldn't even walk a few steps without gasping for air - totally sob. Eventually, after 5 months, at my request, a consultant prescribed the Spiolto Respimat inhaler; the change was immediate and dramatic - my breathing improved immediately (the same day). It continued improving and, together with Chinese Herbs for the inflammation, everything else improved too and I was very soon back to 'normal' (the way I was before hospitalization and taking the Duaklir Genuair inhaler). A simple change in inhaler DID make me very ill, so its worth asking for a change in your husband's. I wish you the best of luck and all good wishes, and I hope your husband can find the correct help soon x

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