Anyone here a carer for a COPD sufferer?

My husband was diagnosed with COPD 8 weeks after we were married in March 2012. He has been taken to a&e twice when diagnosed with severe chest infections. He used to be a plasterer but he struggles to work now we're living on one income and I can see it frustrates him that he can't help support our family. I don't know how to support him with his depression and frustrations. I'm trying everything I can but without having the illness myself it's hard. We do as much exercise as he can manage to keep him active and to push himself with his breathing. He loves DIY projects but loses his temper quickly when he has to stop with not being able to breathe. Can anyone offer advice (carers or COPD sufferers) on how best to help him? We sit and talk regularly about his illness and try to do as much as we used too but I can see how depressed it is making him even though our friends don't realize it. He hides it well from them but I can see he's changing. Any advice would be great. Thanks

23 Replies

  • hi,,ring the blf at 10am, 03000 030 555,the number is at the top balloon, also the e,mail,a nurse will help you,ive got to rush now, work,welcome to the forum and don't worry,xxxits open 24/7 the forum,

  • Hello I'm new to this sight also and know I have just started to look after a friend of mine who is at the end stage of his condition, and like you can see how this is affecting him. I feel helpless and not knowing what to say or do for him. So any help or just a chance to talk to someone about this will be helpful.

    Hope we can be of some support for each other.

  • Hello, yes that would be good thank you. You can never have enough support and I think we would both benefit from talking it through.

  • Good Morning! I care for my husband who suffers with severe COPD - he was diagnosed when our youngest daughter was about 2, so 12 years ago though he had suffered for years before. We are lucky because his job is desk bound and he is his own boss - thank god! Because he actually finds it very frustrating to be at home - we had decorators in last year and have never put the pictures back up. Over Easter I decided it had to be done and got ourselves organised. It was a frustrating experience - my husband found it very difficult getting up and down the ladders - using the hammer etc. Actually we only did about 8 and that was that. The next day he refused to do anything and was pretty bad tempered all day! We do talk about his illness and one of the biggest problems he has is the frustration. My husband also loved DIY and of course just cant now - he finds it just dreadful and gets very depressed about it. He has never been a watcher of TV and finds that he has to now when he gets home because he feels he cant do anything else. I have found that jigsaws have helped to take his mind off his limitations and he has seemed to enjoy them - though he has just finished another and told me he wont be doing another for a while! Winter is by far the worse time - he is affected by badly by cold temperatures and change of temperatures. But there again he might be able to do some pottering in the garden.

    The one thing that did help him I think was to do the pulmonary rehab course - which I found out about through a friend. You need a referral from the doctor or respiratory team. It is an 8 week course of supervised exercise and information. That really helped him take better control of his illness. He was also lucky and made friends on the course. I would go as far to say that it changed his life - he started to control the COPD rather than the other way round. From that he also found out about the local Breath Easy Group and goes to that once a month - which is great for him just to be with other sufferers. I had to fight to get him on the course - we were originally told he was too well to go on the course! For all we talk about the COPD I think it made him feel less isolated talking to people who were actually suffering.

    I wonder if he could start an little ebay business or similar that doesn't need too much physical exercise but might keep his mind busy?

    It might be an idea to ring the helpline (click on the red balloon) I am sure they have some very good leaflets and help for carers as well. Take good care and if you want to send me a personal message please do. Lots of love TAD xx

  • Thanks I'll PM you :) x

  • Tadaw since I have joined this site, I have always been impressed with the wonderful love and care you show to your husband, and also to others who need help on here.

    You really are in inspiration to others coping with sick partners

  • Hi -I sympathise with your position, and although there is a lot of support from the contributors to this site, and you can get a lot of comfort from it, you do need to seek professional advice either from your Doctor or BLF. I am a sufferer (I have asbestosis & emphysema),and although I am mentally very strong and determined, and have always been very active all my life, I get very frustrated at times due to my now limited abilities and the feeling of uselessness? I always pride myself in trying to stay positive, but it does get to me at times. I try to do things to take my mind of things whether its reading (which I never used to do), or making a model (airfix type),you do need something to occupy your mind. But regardless of that, as I said before you need to speak to a professional before it gets to bad and brings you down where you struggle. It Tends to be the partners that get the brunt of the sufferers emotions, and frustrations. Try and stay strong, good luck - Plumbob

  • Hi KM and a very warm welcome to you. Sorry to hear about your dh - it must be very hard for you both. I have a different lung condition, but I think Tad has hit the nail on the head whatever chronic condition you suffer from - learn all you can and do all you can and [quote: 'started to control the COPD rather than the other way round.'

    Agree also - ring BLF and ask GP for referral to a PR course.

    love cx

  • Thanks everyone. My husband has been going to a rehab course for his COPD but he feels frustrated as he thinks its not pushing him enough. They gave him 5kg weights to lift but being a plasterer for over 40 years he's used to lifting 20kg bags etc. But he's still going and asking for heavier weights etc. I also got him things to help distract him when he's having a bad day. He loved building models when he was younger so got him one and it's never left the box! He has dyslexia so he doesn't like to read much or work with numbers. He's not much of a TV guy either. He'll just sit at home do any chores he can manage and that's it really. All of our friends work full time so there is no one to keep him company in the day except our two dogs. It's the fatigue that hits him hardest he'll be falling a sleep on the sofa by 7pm. I don't get home until 5 so we don't have much time together in the week. It is very tiring for both of us I think. He struggles with his sleeping because he's stressed a lot by his children but I don't know how to take that away either. When he can't sleep he wakes me so I don't sleep much either and is making work difficult.

    I have had some communication with the BLF more with that fact I raise money for them than actually needing advice but I will sort that. I've read all the COPD material I could find over the last year and trying to apply some of what I've learned to our situation. Just need to get the hubby motivated in to trying things without giving up.

  • Hi, my heart goes out to you as it can be so hard for someone to accept an illness. Some deal with things differently but the BLF helpline can really help you and your husband. I care for my hubby Pete who has had sarcoidosis for 23 years and copd for 4. He also has a prolapsed disc in his back. In the past he found it very hard to realise that he could not do everything he wanted and had to retire early from work on grounds of ill health. He refuses anti depressants and on the whole we get on with things together pretty well. We have been married for 40 years so that must make a difference I suppose.

    Do stay in touch on this wonderful site and you will get lots of help and support. I joined because I felt isolated but I no longer feel that way. Good luck to you and hubby. Take care. xxxxx

  • Hi KMAnkers. I'm at Stage 4, very severe emphysema. I can understand his frustration. I was diagnosed 3 years ago at that stage so in at the deep end. I found it very frustrating not being able to do stuff but changed my attitude. I get the job done even if it takes all day. As long as no one is in a hurry for it to be done !

  • Puff TMD Why was it that your first diagnoses was that you were at stage 4?

    My first COPD diagnoses was that I was stage 3...but I have had broch since a I have had a lifetime of 'lung infections' but not diagnosed about having COPD as well

    How did you diagnoses come so late?

    Love Sohara

  • I had a pain in my chest that turned out to be angina. As I don't drink alcohol and not overweight, I blamed it on the rollups so I gave up there and then. Over the next 4 to 6 weeks I was finding it harder to breathe. At first I thought it was my lungs clearing out the muck but soon I was gasping for breathe. My doc said I had Stage 3, gave me a prescription for Salbutamol and sent me on my way. I ended up in A&E a few days later. I changed my doc who got me an appointment with a pulmonary consultant who done proper tests and it came out as Stage 4.

    The odd thing about this is that I was chopping logs with a full size axe, mowing a 100 feet lawn, doing some amateur surfing with my girls ( Even at 60 your never too old ). Just the normal things people do. Ok, I used to get a bit puffed out. Within weeks of giving up the fags I would get short of breathe just lifting the axe, let alone use it. The people at the hospital put it down to coincidence but I can't see how it could be as going from one extreme to the other that quick seems odd.

    I am not the only one on here it's happened to.

    Sorry about the long post.

    I can now lift the axe and chop a couple of logs before taking a couple of minutes break and do some more, but I don't do it now. I was just seeing if things had improved.

  • Hi Puff , Read a post on here sometime ago. ......apparently one of the many chemicals in cigarettes contains a bronchodilator which helps keep the airways open. This can mask the symptoms of copd ( however cigarettes are continuing to cause damage ) It would possibly explain why so many people start to show symptoms and are diagnosed after quitting. Think I've remembered that right and may have gone a bit off topic.

  • Any small bit of information helps. :)

  • Thanks everyone for replying. It's already helping me to understand this illness more. It's helping me understand what Keiron is going through and the range of emotions my hubby and I are going through. I really appreciate it :) xx

  • Hi there, really feel for you although I can't add to the lovely replies you've received.

    I can only reiterate that ringing helpline would really help - would he call? They have counsellors as well as lung experts and are very highly rated.

    Wishing you and your husband well xx P

  • Hi ,

    Welcome to the forum. Your husband is very lucky to have such an understanding wife who has so much insight into his condition. Iam the one with copd and fortunately am still fairly fit . However I know that if my husband was ill and could no longer do DIY jobs etc he would not be at all happy ! We are both retired now but it must be even more difficult if your husband is still of working age.

    You have received lots of good advice and I'm sure more people will be along with practical suggestions.

    Cheers Coastal .

  • I don't always come on this site daily so apologise for not responding earlier. I am a carer to my hubby who has asbestosis and COPD and we have been through everything you describe and whilst we want to do the best for our partner please do not forget about yourself. The exercise is an important part as is good clean air and nutrition. We have turned it in to a project where we look at foods that would be good for him and work out what we could make with it. Boredom, the biggest thing to deal with and the consequences, hubby used to be a motor engineer so I figured that if he could build and mend cars then he must be able to make models of some description. We started off with a kit for a remote control boat that he could take to the lake and sail and then I bought him some plans so that he could make them from scratch, yeah ok the house is over run with boats but if it keeps him happy then so be it. I sometimes feel that I have become a bully as I nag, cajole, plead etc. etc. in order to get him to do something but then again I am ferocious when the doctor ignores his latest symptom/complaint and apart from something that is happening now we have managed to get him stable. Going back to hobbies the other thing I discovered he could do, but only in the summer months, is to make clocks, barometers etc. using odd shaped pieces of wood that he can sand down in the garden and he has sold these on line and at a car boot. My apologies if I am rambling but it is early in the morning. If I can help then please pm me. Take care.

  • KMA, So sorry to hear about your problems there,I am COPD sufferer for over 5years now and luckily have a wife with plenty of patience. In your description of your husbands moods ,SNAP its the same here, or I should say was the same, till I accepted the fact that things do get worse,when he accepts this he will change. I went through all that you describe, and after being very active to now just having to sit around, try and get him interested in reading or crosswords anything to keep the mind active..I wish you all the very best and hope that this will be of some use to you, My wife is my carer,and although not being in good health is STAR in caring for me. I am now in last satages now,so I was told last JULY. MY AIM WAS TO GET TO Christmas, I did that now its onto july for my 83 birthday.aso hope to chat with you again at the end of JULY

  • Hi, sorry to hear about your condition. Its always difficult to find the words in times like this. Thank you for replying. I would love to chat with you again thank you. You can PM whenever you like :)

  • Hello KMAnkers, Sorry to hear of your husband's problems, has he tried painting? obviously not oil paints which could affect his condition but watercolour or something. It is surprising how many people think they cannot draw until they try it and it can be very absorbing when you get into it. He might find a local class or group, U3A ones are usually free. His exercise course is all about controlled breathing not necessarily how heavy a weight we use, so we can increase how many times we do an exercise and improve our breath control. Also depression is part of any long term illness and we all have to find ways of controlling it. Do hope things improve for both of you.

  • That painting idea sounds like a great idea,I might pinch that one.I will only say stick with this site it,s been of massive benefit to me,a sufferer not a carer,it is very frustrating for us all but together we,ll all get there.The very best of luck to you both.D.

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