Wife of a COPD sufferer

My husband was diagnosed with COPD about three years ago. He has steadily got worse. Suffice to say he is on several types of medication including warfarin and has oxygen 24 hours a day. He did smoke for many years. The doctors have now said that there is nothing more they can do for him which I find hard to take. He has just started having reflexology not sure if it is helping yet. We do get attendance allowance which really helps us financially.

Is there anyone out there that has tried 'alternative therapies'. I am 66 and my husband is 73 we have been married nearly 47 years.

This is the first time I have gone on this site and look forward to hearing from other people.

32 Replies

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  • Hi and welcome. I can't help with your question but I'm sure someone will be along with some ideas.

  • Hi welcome to the site, my Mum has Copd and recently came home from hospital, for the first week Mum was,on oxygen 24/7 as a carer it's tough! Have you registered as a carer? Also are you on the higher amount of attendance allowance?

    I don't know much about alternative therapies, I try and tackle the possibility of depression, I've done some research on gardening with Copd as Mum loved gardening!

    Phoning the box helpline may yield some ideas!

    Take care! xxx

  • Blf helpline sorry!

  • Hi jeanghost, know how you feel, sometimes I think I have too much time on my hands as I keep investigating various things. I did discover autogenic training, a form of deep relaxation and thought it sounded really good until I discovered the cost - £60 a session and you need at least 6 sessions. As of yet I haven't found anything that is available on the NHS but will keep looking, if you find anything please let me know.

  • Hi Jeanghost

    Another comment which doesn't answer your question, I'm afraid.

    I am in the same basic position as your husband - nothing they can do. My wife is in the same position as you, but she won't ask for help, although the BLF is there for her too.

    I find it very hard to cope some hours on some days, and I wrote a long email to the British Lung Foundation, just dumping all the fear, anger, frustration, depression, not asking for a reply.

    I have had two phone calls from a specialist nurse at BLF, and an invitation to call them any time. I found those calls really helpful - knowing there was someone out there who understood where I was, didn't condemn me for being a wuss, and could give me time when I needed it.

    I've had to accept the position that I destroyed my lungs through smoking even though I gave up 27 years ago, AND THERES NOTHING ANYONE CAN DO. That acceptance is the key, and it comes & goes.

    I wish you the best (that's both of you) in finding some sort of serenity.

    Frank

  • Hi Frank, I also have copd and have never smoked so there is no point blaming yourself it just happens. I must admit I was angry when diagnosed but it didn't help. You are right just accept and carry on as best you can. BLF are a big help. Love to you and your wife.

  • Hi Frank

    Thanks your message it is no good blaming yourself, years ago they never realised how bad smoking was for you. I have never smoked but this is because I never liked it. My husband smoked for over 50 years and packed up 6 years ago just by willpower. It seems that his troubles started then. Obviously the damage had been building up over the years. All you can do is make the best of life my husband does jigsaw puzzles and crosswords to pass the time. We are hoping we can get out more when it is not so cold.

    I wish you all the best. Jean

  • Hi this is my first time on this site, my mum has copd and has always been so active but recently due to this horrible illness she hasn'tbeen able to get out at all.It's hard as i don't drive so we have to get taxi's most places.I have just made her an app to go the liveability classes to do arm chair exercise they do an induction day for assessments she is hoping to be able to go in the pool even if only for 10 mins. Anyway it has put a smile back on her face looking forward to getting out.I wish everyone out there all the best. x

  • Welcome bm64!

    You have realy hit the nail on the head,getting Mum out to classes.Has she done a pulmonary course yet? thats worth getting into if not.

    Swimming is a great idea,I love it, as your body is bouyant in water(not spelt right)lol,getting tired!! Just a bit at a time.

    I am not sure how things work in the uk,but over here (aus.) many orginisations (Anglo care,St. Vincents etc) will pick people up, and take them to different courses or outings etc,if you dont drive,this is at no cost to you.

    Do keep getting her out, as she loves it, and will stop her getting depresed.You sound like a loving daughter,keep up the good work(not easy at times!) Love to you and your Mum,

    Wendells xxx

  • Many thanks for your kind words x

  • Hi Wendells,

    I have tried swimming but find that the chlorine makes me gasp. Sorry, but thought I would raise this because pools are often heavily chlorinated.

    I tend to stick to giving my dog short walks. Hoping that it will exercise both my body and lungs.

    But saying that, there may be pools available? I would love to know if there is?

  • Yes the chlorine in the pool,can be overpowering.Does your council have a helpline,where you could find out all the pools in your area?

    Some hospitals have hydro swimmimg pools,over here,but they can also be highly chlorinated!

    I am sure your dog enjoys his walks,and that will definetely excercise body and lungs,so you are on the right track! xxx

  • Hello,I am reading your post and it sounds exactly like my husband and myself, I am 70 years old next week and my husband is 66 years old, he is on oxygen 24/7, nebulisers, antibiotics three times a week every week plus emergency antibiotics on standby, goodness knows how many tablets. My husband is also end-stage, this does not mean he is going to die soon, just that he is getting all the help there is out there so now has to live with it.

    I am finding it difficult because my husband is domineering and expects everything to be done for him, does not want someone to sit with him so I can go out, now the dietician wants me to make him meals every two hours as if I haven't got enough to do, because he is losing weight and muscle (due to the fact he won't get off his bottom and do anything) so he has no appetite.

    We have had a young man come to the house from Mental health to talk to him about his worries and he asked me how I am coping, I told him I would be fine if I hadn't been stuck in the house 24 hours a day for the past 13months. He asked my husband why I could not go out and leave him and he said, 'I am not stopping her'.

    Do you have a community matron, we call her our angel, she will tell you anything you want to know about the help in the area, I could not take her up on it as my husband does not want anyone interfering in our lives so I am now stuck with him on my own day in and day out. We have been married 50 years and he has had COPD/Bronchiectasis since 2008 and to be honest I don't know how much longer I can go on, I have lost 3 stone in weight through stress and running up and down after him. Our sons are throwing me a big party for my 70th next week and I just don't know if I will be able to go as my husband has told me that if he is ill we can't go and he has said if I go on my own he will never forgive me.

    Please, please don't be like me and become a carer who begrudges everything she has to do because of his demanding and nasty ways, source everything on the web and the BLF, the quality of your own life depends on it as if you are ill, what happens to your husband. It is too late for me as I am stuck with it, I sometimes wish it was all over before it kills me.

  • Hello sweething

    my husband has copd for 14 years so i am saying to you take control of your life or you wont be able to carry on, if you are ill who takes over. write down what you would like to happen.then talk to your GP,family,comunity matron, and ask for help it is out but you got to ask for it. Go to your party you deserve it.

  • Sweetthing, you sound like an old softy - and it's not good for you.

    My wife's mother, in a nursing home 5 minutes up the road, is just as your husband sounds. Thank god she's in a nursing home not at home with us, but she is very demanding and not at all grateful. And my wife puts up with it.

    My elder son & his family live 15 minutes away and my wife is so afraid that she won't be allowed to see the grandchildren that she is a doormat for that whole family - emotionally, financially and at their beck & call.

    My wife does not realise that she has the whip hand over both of them - mother in law would have no one to look after money and admin or to shop for her, son's wife would have no one to take kids to school, fetch them and cope with sickness & holidays, so they couldn't afford some of the things they want - and it's making my wife ill.

    And now I'm becoming progressively more dependent, which I hate. I try to minimise my demands, to say please & thank you at least, and to appreciate my wife's efforts.

    Maybe your husband should show a bit more gratitude - and maybe he might think about the consequences if you have to go into hospital with exhaustion. Show the ungrateful SO B this email, and some of the others in your support. Try to get him to behave by scaring him, even if his mum didn't teach him manners.

    Best of luck in finding your self respect.

    Frank

  • What a miserable time you are having. It must be awful. My husband has had COPD for about 8 years and is progressively worse and when he has exacerbations I find it hard then so goodness knows how you are coping. Please ring the BLF helpline and see if they can offer you some help. Could you talk to your sons and explain how hard things are for you. You are stuck with it BUT you need to make changes for yourself. Please try to look after yourself. It might feel selfish and so what if he doesn't forgive you - he is being pretty horrid anyway! You need to get out and see that you are loved and valued. Please take care. TAD xx

  • Sweetthing,

    your husband is important

    but you are important too

    I have no right to say this perhaps but I am going to say it anyway. If your husband is not well enough to go to the party your sons have arranged for you and he is not well enough to be left alone, please arrange someone to be with him while you go to your party.

    Your husband is sick and you do everything for him

    That does not mean that you are irrelevant or have to give up everything, that is unreasonable and SO unfair on you

    xxx

  • hi i know how your feeling i nursed my husband 24+7 for many years.this was previous to 9 years ago.i know it hurts to see them poorly i was married fo 41years.try and find out about a carrers society they care about YOU.and can help you financely with some things to make life easier for you..i lost him 9 years ago this April.i now have c o p d.but there is more help now than there was then..this site has been a great help to. Me and the people on here also

    ..so keep asking and talking onn here and any were else you can...and take care..lots of love to you both..xx

  • Hi Jean,

    I'm not realy up with alternative therapies either.Except for getting a masage every so often, which is so relaxing!!(she does not use the perfumed things on me) I have heard people saying they realy liked reflexolgy,I dont think things can cure you,but if they make you nicely relaxed, why not?Makes life a little easier.

    Welcome to the site,wish you and your husband well,hopefully someone will know more than myself!

    Love Wendells xx

  • acupuncture is worth a try - see acupuncture.org.uk/ to find local practitioner... and a local herbalist too. I had several acupuncture sessions and I know they helped me. I take different herbal preparations too, and am planning to see a herbalist

  • hi jeanghost i have c.o.p.d.i also nursed my father who had c.o.p.d. but i had to do everything myself as there was no group meetings and very little information. but during my time of caring for my father i learnt what was helping my dad and what didn't i found if i did gentle massaging his back a couple of times a day would help ease his lungs a little although unfortunately you cannot cure it try a keep him motivated as well because that too will help. and if you just need a chat to someone im more then willing to chat im on Facebook and use my real name of pearl smith so if you just fancy a chat then look me up huni i don't mind anyone looking me up and chatting however be warned my page has all kinds of people on some friends can be rude at times so i would advise you to pay no attention to what goes on the front wall ha ha i am not responsible for my friends choice of words. but there is a privet chat on there as well if you wish to that is

  • which Pearl Smith are you thought I would look you up but there are too many of you LOL

  • jandan im the one with a dark top on and il be going on there in about ten mins ok chick

  • if you go on you will see i have a pink frame round me and i have a dark top on

  • I would like to chat with you on face book I will give it a try, thanks for your message. Jean

  • hi jean i have a pink frame round me and i have a dark top on with dark hair

  • HI Jean, I heard that acupuncture was good but my husband found it too stressful going!! That might be an option. The local breath easy group might help you too. Good luck TAD xx

  • Hi Jean

    I also have COPD but I do not have any carers and I live on my own so it can be done.

    But there is one thing I will say to you and to any other carers who are reading this blog and that is it is very important for you to care for yourselves first!! If you crack who is going to take over from you that is what you should be considering and if you have families it must be made clear to them too. Treat yourself to the reflexology as well or a relaxing massage or if not possible while your husband is having his treatment or even rest take your self out for a coffee or just some navel contemplation - not shopping or messages some me time PLEASE.

    Janet

    xxx

  • Hi Jean,

    My husband has very severe COPD, on oxygen 24x7, and we are both in our 60s. It's true that nothing can be done to reverse the damage done to the lungs, but it's not true that things cannot be done to improve your husband's (and your) quality of life. Ask for all the help that's available to you and if you haven't already you might want to register with your council as a carer.

    My husband can't do/won't do anything for himself that involves physical activity. I have days when I feel very disheartened and resentful. I volunteer for half a day once a week and I take craft course when I can manage. It does not make up for missing out on what should have been a happy, active retirement with my husband .. but without it I doubt I could stay sane.

    PM me anytime.

  • Hi Abbi

    Thanks for your message. I agree with you about missing out on a happy, active retirement. I would like for us to go on holiday I do know that i can get a concentrator fixed up in an apartment at Butlins if I do all the arranging. We did this two years ago but my husband was not on oxygen all the time as he is now.

    He is not able to have acupuncture as he is on warfarin and he could bleed too much.

    I did volunteer ion a charity shop but have had to pack that up, and as we get attendance allowance I do not go to work.

    I miss all the things that my husband used to go such as looking after the car and even putting out the rubbish.

    We live with my daughter and son-in-law and grandchildren which keeps us going and they are very helpful.

    Please message me back.

  • Hi again Jean,

    It's good that you live with family. Have you or your husband talked about the possible benefits of acupuncture with his doctor? I can't see how being on warfarin would mean he couldn't try acupuncture. I was on warfarin myself for 6 months and it did make me very nervous, but I had dental work and the odd cut or two whilst on it without a problem I don't know much about acupuncture, but I don't believe it causes bleeding. The needles never go so deep as to be a problem in that regard as far as I'm aware.

    If you're keen to go on holiday you can also have liquid oxygen delivered to your holiday destination in the U.K. The only concern of course is that whatever ambulatory oxygen you husband uses will last the trip to your destination. My husband refuses to go on holiday. I take one holiday a year to visit family and have a carer live with him whilst I'm away.

  • Hello Jeanghost, I Have been going to the Pulmanory rehabilitation group for six sessions so far and have found it very useful, I Have also met some new friends there too. They give information and talks, provide excercise and monitor your oxygen levels and blood pressure.The specialist nurse asked my doctor to prescribe some new tablets to help clear mucous which is helping. Everyone on the course is at different stages, seniors and younger people. You can ask your doctor or COPD nurse to refer him to a local clinic. The sessions run for six weeks, twice a week, and a total of 12 sessions. Depending on your level of fitness you can also be referred to a gym at very small cost. One lady was prescribed oxygen she's only in her thirtys. They also have speakers, one week they had a lady from Talking Therapies and talking health, you can be referred to all these things free. It's all there to help encourage you. They recognise that you may suffer depression and lack motivation, maybe not even eat properly, all things are considered and nothing is too much trouble. Is this something you could find out about? Even if he went to mix with others it might help?

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