My wife is 58 and diagnosed with COPD 4 years ago. Stage 3 at Christmas but has had large decline and expect her to be near stage 4 next month. She knows nothing about her condition as does not want to do any research. She vapes, probably drinks too much and does no exercise. As a result she uses a wheelchair to get anywhere and I am her carer for pretty much everything. She is a headstrong individual and just wants to be left to do the things she enjoys. I don't seem to read any comments on here of this kind of experience. Has anyone else experienced anything like this?
First post. My Wife is not interested... - British Lung Foun...
Welcome to the forum hillclimber1. I’m sure I’ve read of others with relatives who’ve been much like your wife. It’s very difficult for you to see as her husband and carer. May I ask if you have any family who could encourage your wife in any way? Does she have a good GP or consultant?
It might be a good idea to ring the BLF helpline for a chat on 030 555 03000.
Hoping things do improve. Take care xxx
Welcome! That's so hard on you Hillclimber. It takes a lot of motivation to keep ourselves well with exercise etc. Does your wife know how much exercise helps? Im at latish stage 3 but exercise regularly and can lead decent life. Of course you dont say if there are other reasons why exercising is hard - e.g. some find it hard because they have arthritis. It was be great if she could use that strong-headedness to motivate her. Her muscles must be pretty deconditioned now but there are exercises which could help with this. And well conditioned muscles are better able to use whatever oxygen is available to them.
Most of us have benefited from pulmonary rehabilitation which is an exercise and education course for people with lung conditions, and the best evidenced thing for improving our functioning. You could talk to your/your wife's GP about that if it's appropriate.
But this isnt really what you've asked about. Im sure there probably are quite a few who react to this nasty condition in the fatalistic way your wife is doing - using smoking and alcohol is very understandable though ultimately not helpful. I hope you can find some way of persuading your wife that she's worth putting a bit of effort into improving her condition. Others may have far better suggestions than mine. Good luck anyway
Thanks for your response. She has never been a great exerciser, which is such a shame as I do loads and understand its value. The loss of muscle mass is now quite bad. the last time we saw her pneumologist she put her on a physiotherapy course to be taught how to breathe properly. She refused to go. I agree about the vaping and alcohol. Thankk you for your thoughts
There have been other posts similar to this.
Its a sad situation, when people have made that choice, makes it very difficult for those caring for them and concerned about them.
So sorry you are dealing with this situation, but really it is her choice and unless she wants to do what helps, difficult to offer any suggestion.
If she would consider exercise, there are chair based routines, there's lots of information on healthy eating, helpful lifestyle changes etc that can be accessed.
Perhaps you want to check some out. BLF pages are very helpful.
A very warm welcome to you hillclimber. I really feel for you with the situation you are in. I wonder if your wife has given up or if she is in denial. Either way it is so hard for you. You and your family can only encourage and support her. She will, righty or wrongly, make her own decisions.
Agree with sassy re having a chat with BLF. I am sure they will have come across this problem before.
Don’t forget to look after you in all this and please know we are here if you need to talk or have a moan - many of us do at one time or another and everyone is very supportive.
Hi Hun , Welcome, We all want Magic Wands, the easy way out of Self Denial. Will you be able to show your Wife, (what is her Name please?) this Forum. My Grown Children's Step Mum, Nana, Great Nana at 57 years of age, was Cruelly Diagnosed with COPD & Lung Cancer One year Ago, They all live in Spain. Wendy was Like a Sister in law to me, She asked me everything she could do to deter the Diseases, as I am Stage 4 Emphysema. She so wanted to Exercise, She so wanted to Live, She was Young & Beautiful, My Grandchildren & Great Grandchildren Loved her so Deeply as They do me. She never got the chance to Learn what she had to do to Survive, She Was Taken far too quickly, The Hospital ( Torrevieja) were excellent in her Treatment. You See Hun, Your Wife has to WANT to live, My Sister in Law wanted to Live, But her Disease was to far Gone. Chemo didn't help. While there is so much Self Help, There is Hope, That is What we all here, Live For "HOPE". Please Ask your Wife to Read the Comments to Inspire her. I wish you & your Wife The very Best in this Time of your Lives. It is so Heart breaking for you as her Carer and you must Take Care of yourself which I know is so hard for you. Much Love & Understanding. Carolina. xxxx
Hello Carolina. Thank you for taking the time. My wife, Jo, is under Murcia, So not a million miles away. She says she loves her life here in Spain, drinking cava, watching TV, long siestas. I know this sounds awful but not sure she WANTS to live enough,to give up some of those things and start exercising. I shall try and get her to read the comments. The care and compassion I have had from people has been so heartwarming. I shall try and get her to read the posts, but she is not a great fan of forums. lol.
Morning Hun, Your only Down the road from Torre, I know Murcia well, a Good Hospital also. I lived in Torre for 28 Years. been back in UK for 7 years, My family being Spanish are there. Jo can still have her Life Style and do 10 minutes Exercise sitting in her Chair, I do here, and I know it has made all the Difference to extend my Life. I hope Jo reads the Replies to your Lovely Request on her Behalf. Stay Well, Stay safe. Abrazos y Besos. C. XXXX
I am a person who might well be your wife. I have a chronic condition, diagnosed when I was 34/5, told would shorten my life span, told all the things I should/should not do. Since then have been put on new meds. have made it to 68. I have written a Living Will, listing the surgical interventions I will not accept. I do do things I am not meant to, and do not do some things I should, I wish to have a quality of life which suits me, whether or not it may be shorter than some doctors/friends think it should be. I am not in denial, I just feel I would rather have 2 years the way I want them, than 5 being bored/miserable. I no longer have a husband to worry about me, as he died 8 years ago, but doubt I would have changed to please him. I have a few friends, most of whom, like me, worked in the Health Service, they understand, even if they do not agree with my views on my future. I find it difficult to talk to people, in a way that they can grasp, that for me quality (or my concept) of quality of life is far more important than quantity, I do not fear death and feel that I want to be as happy as I can, within my physical limitations. Yes your wife may be depressed, or may be coming to terms with where she is at. People talk about coming to terms with something like this is a one off, but from my experience, I had to come to terms with each individual change in circumstances, (first surgery, first drugs that stopped working, being pensioned off work the first time, surgery that went wrong, second being pensioned off work, being too ill to get outside). It could just be ,she has made a decision about what she will/will not do, see if she can articulate her reasons for not wanting to do the things that would "help" her.I do have a friend, who will read nothing about her illness, just says she will put up with whatever happens next, just does not want to worry about things before they happen, she feels happier that way. I spent years working with people, trying to help them with Rehabilitation programmes, some would just not play ball, so I do understand how frustrating it can be, all you can do, is be there, if she chooses to change her mind, or more importantly if she does not.
I think you are right, you may well be my wife!! Thank you for your very candid answer. I think the quality vs quantity situation is spot on. I get it and am with her, unlike friends, relatives and doctors. I spend quite a lot of time trying to answer people wanting to know why we haven't tried this or that.
She has come to terms with her condition and also does not fear death. I think it is harder that almost on a weekly basis there is something that moves from the column of things she can do to the list of things she cannot.
I have read a lot about copd as well as her other conditions and the comorbid impact they have. I have probably read too much if I'm honest. I never tell any of it to Jo. It is nice to know there are other people on her path.
I thank you once again and wish you all the bezt
Friends and relatives can be "interesting" I had a friend (had being the operative word) who could not understand, why I did not regard having her as a friend, as a reason to live for a good many years, as she wanted me to be around! My Mother in Law, visited once a year, used to drag my poor husband into the kitchen, and hiss in his ear, why wasn't I well yet, did not understand chronic at all.
Also the "natural cures" apparently anything that is in nature, such as plants can cure anything!! When I explained that, deadly nightshade , yew berries and puffer fish were all highly poisonous (I used to fantasise about using these with my Mother in Law) I used to get, oh well Kale will cure anything.
I get Jo's attitude too. I am not as far along as she is though I think I am stage 2 now. I packed in smoking for 17 months and felt awful the whole time. I went back to it and feel a lot better - for now. I am very aware I am choosing short term comfort over longer term survival.
Jo doesn't necessarily need to give up things she enjoys, but taking care over her health too means she can enjoy them for longer. There is nothing wrong with watching TV or siestas for example as long as she spends a bit of time exercising as well. It's the same with healthier eating. This doesn't mean giving up her favourite foods, but eating less of them and having some healthier options. In other words damage limitation.
And there is you. Have you pointed out that she is detracting from your enjoyment of life by making you look after her so much? Maybe if you do a bit less she will start doing a bit more for her health? x
HYPERCAT54......you really need to keep check on your FEV1 % and CO2 levels in your blood if you continue smoking heavily................. FEV1 shows your true stage [lung damage] ,,,,, ABG blood test shows CO2 retention [ if any] which reduces the room available in your blood to carry O2 arond the body and to the brain etc............. stay safe ............. stayingalive
Hello hillclimber1 ,😊👋
Welcome to the forum. I'm sorry to hear about your situation. I think everyone has added excellent advice and personal experiences. I am wondering how you are managing? You have mentioned she is in a wheelchair. Is this because she cannot walk for some reason or because when she feels breathless she just kind of gives up on walking? Does this mean you also take care of her personal hygiene like showers, toilet time, changing her clothes , plus all the housework? I apologise for being rather personal and maybe even impertinent, but how is life for you? She seems to be happy in her situation or at least comfortable from what I read from your post. But there is more than one of you in this partnership. Sorry again for my intrusion. And of course you need not answer at all.
Cas xx 🦋🌿🌼
Hi Cat. Please don't apologise or think you are being intrusive. Only by being open can we learn. The wheelchair started off as a way of moving her larger distances. I think she panics about being stranded breathless and feels more comfortable in it. She is still responsible for her personal hygiene., which is good. I do pretty much everything else.
It is tough because everytime she can't do something, I can't do it with her. Like a holiday or going to the beach.
I'm not sure the impact on me registers highly. She has said that my life will get worse and when she's gone it will get better. I get out on my bike with some great friends, but can see that disappearing as time wears on
The reason I ask is because I know how easily being a carer can easily take over EVERYTHING. Being a carer to two elderly people over ninety I had no life. My life literally revolved around them. Although I respected them both greatly, sometimes I longed to disappear never to return. To be plain and blunt at the end of life the physical and mental toll on the carer can be crushing. So, I am wondering what social services are available to you in Spain? Can you get helpers to give you a break? Here in Japan we have what they call short stay services where the patient can be looked after by a care team for a few nights and carers can have a break.
The best case scenario though is if your wife would be willing to try to live again. But you can't make someone do something they don't want to , no matter how "correct" it seems. I truly feel for you and hope things can somehow improve.
Cat xx 🐈 😅
Hello hillclimber1 and welcome to this Forum. I also live in Spain, in the next province to you, Almeria in a village called Arboleas not far from Mojacar. I am carer to my husband John who has Pulmonary Fibrosis. This illness has changed his whole personality, he has no interest in anything (quite the opposite to Jo). He will exercise but only when I suggest it, and he needs me to tell him what to do, what to wear etc. I did once think it was depression and he got to see a psychologist who prescribed antidepressant pills, but they did not help. It is frustrating and I feel I have already lost the man I married. He, like Jo will not read this Forum as he doesn’t want to read anything bad about his condition, but I do read to him many of the posts. John has suddenly got a lot worse with his breathing, I am hoping it is because of the heat (although it has never bothered him before). It is also very frustrating that his consultant appointment in March was cancelled (understandably) and we are still awaiting another one. Is it the same in Murcia? Take care Carole
You need to accept you cannot change her or force her to change. As a brutual as my statement may seem, the reality is only she can decide to exercise and care for herself. I have severe asthma and my father, has COPD. He smokes and no longer exercises. Furthermore, he knows the benefits of exercising and quitting smoking; however, he has chosen not to follow the advice given to him. All you can do focus on supporting yourself and accept you willl not change her until, if ever, she is ready.
Hi hillclimber1 and welcome. I'm afraid I'm rather late responding, but I've been admiring the wealth of responses you have had and wondering whether I can really add anything.
I decided to link my response to that of B_Asthma because this is one of the few which reflects the old adage "you have to be cruel to be kind". As someone who has grown up, steeped in western culture, I have always strived to change things for the better; the problem with this approach is that change can be stressful in itself and failure to change something is often quite frustrating. When I first went to India 35 years ago, I was struck by how happy people were, despite being poor and living in unsatisfactory conditions. Of course, the poorest who were starving would never be happy, but more generally the attitude of accepting what you had seemed to pay off. Of course, that's all changed now, and many Indians who wanted a better life went abroad, then returned to set up their own businesses, and the standard of living has improved tremendously (unfortunately, so has the pollution, so there's a downside to everything). I'm not suggesting there is a right or wrong approach to your dilemma (there are pros and cons to any approach), but there are just some things you can't change.
I think I read somewhere that your wife is not afraid of death, but seems to be afraid of something which she doesn't articulate. It was Ludwig Wittgenstein who said "Death is not an event in life: we do not live to experience death". Sorry, I'm not trying to be too profound here, but I think it's a relevant quote because we often confuse death with dying, which IS an event in life. So it is quite possible not to be afraid of death, but to be afraid of dying because of the implications for both of your lives - that might be a useful discussion to have.
My immediate thought is the COPD is here to stay. She can be "good" bored and deprive herself of what she enjoys for the time she has left or restrict herself to an arduous regime for possibly more years on this planet. I liken this to the last 3 months being unable to hug my family. Do I go on not doing that for months when maybe I dont have that many years left or do I take my chances and enjoy what I do have left? Personally I'd go for the latter . However, the moral dilemma is in the impact on you. The you will need to decide how you want to live your life and if you are prepared to sacrifice it looking after your wife who is on a road to perhaps meetingn her maker sooner rather than later.
Welcome hillclimber1. You have had some excellent advice from the lovely careing people on this Forum I cannot add to it all Except to say. Try to look after yourself also. Because it can't be easy for you seeing you wife getting worse and seeming to not be concerned about it And the strain on you can sometimes creep up on people too. So just try to take time out for yourself Do you think a fresh friendly face may jolly her into making more effort to move and be more positive Or 1 of those walkers with wheels That also doubles as a seat to rest That would motivate her more Take care and keep in touch Brian
I have read everyone's comments and suggestions and agree. What did strike me was that it is possible your wife is depressed. As someone said, a call to one of the BLF advisors may well help to give you some guidance. Sometimes, you have to be cruel to be kind and I am wondering if you were to have a heart-to heart with your wife and make it known to her just how much you are concerned about her and how much it is affecting you as her husband. My thoughts and prayers are with you both. Christina
Hello and welcome. Everyone else has said the most relevant things.
I have empathy for you and Jo. I can see why she thinks that she wants to enjoy life in her way without making adjustments which might prolong her life. And it must be devastating for you to watch the person you love doing something that seems self destructive.
But like in much of life, there are no easy answers to any of this. Motivating someone to change when they have no motivation is nigh impossible.
One thing that came to me is that if she could meet someone who has really kept their own COPD under control with lifestyle changes, and that if they could show her and talk to her about real life possibilities, then it might inspire her a bit. The theoretical stuff might just seem irrelevant or improbable without a real person being involved.
She might not even be interested even then, but if you could find someone like that to chat to her, it might be useful.
But in the meantime, take care of your own self with those bike rides, and best wishes.
Touched by your post. Wishing you all the strength in the world for getting some kind of balance with your wife's needs, her strong opinions and your desires. Would be great if you could both get to see your son in Thailand. You'd both love it.
Brit expat living a second life in retirement in rural Thailand with Thai wife and our kids (and living with bronchiectasis).
Does Jo feel the trip to Thailand for the wedding would be to much for her may I ask?
I am unable to visit family in the Far East as my respiratory consultant has said it would not be feasible with my badly behaved lungs.
But I have managed short flights maximum 2 hours which is a huge joy.
I hope that if able you would consider going yourself-my hubby goes overseas every year for 2 months with my blessing.
We all need something to look forward to
Yes you are quite right the smog in Bangkok was horrendous the last time I was able to go in2005.Hubby tells me that the annual burning of forest in Indonesia has a bad effect on Malaysia /Singapore which is where he goes.
I do hope that you have a lovely time.
I understand your wife's concern re insurance.,as I have difficulty finding policies perhaps there are some suitable for you both.
As regards covid 19 lockdown I got hubby home from far East 2 days before Malaysia closed the borders -a relief I can tell you!
It is hard not to be able to share stuff together -how lucky we are to have technology these days -have climbed to base camp ,mount blanc Kilimanjaro and walked the silk road with my family all without leaving my armchair!
Oh dear! How frustrating for you? I know it is naughty to suggest this, but could you have a pretend problem with the wheelchair..wink wink, so you need to have it repaired for her safety...but in the meantime, suggest she has a frame to get about..sounds childish I know but you have to be cruel to be kind. Sounds as though she has no fear of her health declining, which it will. You are a wonderful caring person...don't feel you have no choice...its her choice to live and do the things that concern you. You must try to point out; you are still able to do things that make you happy. You also have a life..So do them.
Welcome to our club hillclimber. Good to see you are seeking support. Your wife sounds like she has had depression for a long time. Does she know how her attitude is affecting you? Perhaps giving her a new puppy or two to care for and walk might make her life worth living as an addition to your love and care. This may jolt her out of her disappointment in her health. Smoking and drinking is a cop out, drowning sorrows, and moving her towards her end faster than necessary. Very sad. I particularly feel for you. I hope you have some really positive outlets to keep you going. You deserve it.
Take care and stay well. Keep in touch with all the lovely people on this site.
Hi Hillclimber, I see you have already had loads of advice from the site, which is marvellous. So many kind souls more than willing to listen and share their experiences of this debilitating disease so I will leave it at that. However, don't forget to look after yourself. Depression seems to be part of COPD if you let it creep in. Keep your chin up HC and come back soon. All the very best, you sound like a very caring person.
Hi hillclimber , the only thing I can add to all the good advice you ve been given is that when my husband was rushed to hospital a few months ago we were told that when he was feeling particularly poorly a few weeks before being admitted rather than taking to his bed as he did he should have tried to keep moving as much as possible , that the lack of activity and contributed greatly to the condition he was in - which was very serious My husband was diagnosed aged 57 and for 12 years he managed to continue working ( he was self employed ) in a physically demanding job and we continued to enjoy holidays abroad etc He was probably stage 3 at that stage. Admittedly the past four years have been harder but he is still able to handle his own personal care and he is 72 ! I understand your wife's attitude, I agree quality of life is more important than quantity but does she really understand that she could have a good quality of life for many more years to come just by making some minor adjustments? Our respiratory team have drummed into us that keeping active is key and we have seen this for ourselves . Even when a patient is feeling really bad they still advocate moving ! Smoking is a no no ( not sure about vapeing ) but I'm sure a few drinks won't do any harm as long as she is not sitting all day . Maybe you could tactfully broach the subject as to why she is happy to use a wheelchair if she really wants to have a "normal" life ? Good luck and be sure to look after yourself
Thanks for your comments. You are right about the exercise. Jo's weight is now below 50 kg and the loss of muscle mass makes it very tough. She has never exercised and I think it adds to the problem that some of those decisions have now come home to roost.Vaping is still bringing irritants into the lungs so is very much frowned upon by her consultant.
Hi hillclimber1 I’ve just reread your original post and it seems you are doing pretty much everything for your wife ? She doesn’t need to take up weightlifting or any other form of “exercise “ but I would imagine she could make herself a sandwich ? Or wash a few dishes ? My husband does every day and he was given a 50% chance of surviving after respiratory failure in January . Walking from the living room to the kitchen is still keeping active. As to your situation I share your pain as I’m sure every carer on here does Our own lives are severely restricted and affected in all sorts of ways and so it is very important to look after our own physical and mental health I have an appointment to speak to the doctor tomorrow on that very subject (after taking advice on this forum ) The very best of luck to you - stay strong
Somehow i suspect that the name you have chosen "hillclimber"might suggest your enthusiasm for healthy exercise is acting as a complete deterrent for Jo to do anything much at all,unfortunately i am the worlds worst agony aunt but pehaps if you toned down your act a little and she upped her anti just a tad you might fimd a happy medium,just a thought and absolutely no critisism on your love of healthy activity.
Best wishes Ski's and a not very active cat.
Perhaps you can find an activity that might interest her,even if it was just a trip out to a bodega in a small rural village that involved a slow walking tour of the village which would give her the best exercise of all combined with an interest in seeing what she likes being produced,sorry you would have to pick up the tab of course and splash out on all the asscoiated produce they sell.
She needs a "wake-up call".
You need to stop enabling her. Stop taking care of her, if she won't take care of herself. Tell her if she doesn't care enough to take care of herself, then the two of you need to prepare for her death. Start making funeral arrangements for the near future.
You most likely need a break, tell her that you will be gone for the day and do something for yourself.
Good luck, Beth
A good friend of mine died recently, for the last year of her life, her husband used to arrange for either one of her friends, or a Macmillan Nurse to do a "Respite" few hours. He used to use this to go and play a round of golf, or spend an evening with his friends. He said this helped and also gave him more to talk about with her. He also went to cookery classes, so he could make more interesting food for them both (she had always done it). This seemed to work for both of them, she saw her friends and he had a much needed break.
Hi, I would love to be able to speak to your wife. I was diagnosed at 50, 15 years ago now. I am still smoking and drink wine every evening. I have gradually got worse over the years, no surprise. For the first 5-6 years I felt like my life was over so what the heck. I finally got over the very deep depression that I didn't realise I was suffering from. Then I started looking for info, for the next few years my life improved dramatically. I did the pulmonary rehab(everyone there was really old) but I learned a lot about breathing techniques and understanding of what was going on in my lungs. I started going out and about again and even having a bit of a dance on a Saturday night. Went on holidays and walks by the sea. All of these at a much slower pace.
After all these years the only thing that makes me go down hill is if I get an exacerbation, never quite get back to where I was.
I'm now at so called end of life and have been for the last 18 months. But I'm still here, still enjoying my fags and wine.
I wish you both all the best and hope I've helped you both.
Lots of love
Hello hill climber
Thats so hard for you and to feel powerless. I think i know how you might feel. My mum died of emphysema but years before her diagnosis ( back then they were slow in recognising COPD) we urged her to quit smoking-she got very cross with us all but when she was diagnosed she was in denial for a long time and continued smoking until her disease progressed then she stopped. She was quite angry really and the depressed as she had always been very active. Then her spine degenerated which prevented mobility and she ended up in a motorised scooter and being hoisted at home due to weight gain.
As a family we tried to motivate her but she didnt get engaged with much at all as her disease progressed and it was very hard for some to understand. She was never a person to exercise as such but gardening was her great love and birds. Looking back she suffered a lot because the disease was less understood. Having COPD myself i can now start to appreciate how constantly battling with this and pain in my spine why she got down in her mood and sabotaged
a lot of motivational ideas we might have. To be honest i think she gave up. Try and get a long side her and also find out if shes in pain because that prevents wanting to exercise.
Your wife might be depressed and speaking with her and her GP could help.
End of life is a hard subject to talk about especially with loved ones-shes very blessed that she has you and your love. Dont give up and try not to nag. Maybe find some help for you too and someone to have a chat with?
Wishing you all the best.
Not sure ive added anything useful really but we are here for you.