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British Lung Foundation
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Lung foundation leaflet in members pack.

We have just received our members pack and a leaflet concerning end of life has really put my husband who has Copd and Bronchiectasis in a desperate situation. He has taken to his bed, saying he is selling our car because he has not long to live. What do I do now, he refuses to get out of bed saying there is no point. Why did the leaflet have to be sent to a seriously man, surely the carer should have been sent it. We are trying to keep his spirits up and he receives a book about dying. I spoke to our sons as I am at my wits end, he is not the easiest of men but now he has totally lost it and does not care about anything. He refuses to walk and when he tries to stand up he collapses. His lungs are slowly dying as he wont walk and it is all because he thinks he is near the end. He is supposed to exercise to get his strength back but he refuses as he says what's the point. The matron and physio tell him to exercise but he says he cant. When he goes to the toilet he collapses.

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Please inform the BLF what has happened sweetthing

Richard

Sweetthing it is so sad that your husband can onl see dark, dark, days ahead :( instead of seeing how he can be in control of his illness, rather than let it take control over him.

You shouldn't 'blame' yourself either, for his lack of interest as you have tried as hard as you can to persuade him of the benefits of exercise. He is the only person who can help see that it doesn't have to be this way.

Maybe a course of psychotherapy would help him. Perhaps have a word with your GP/matron to see what they think ?

I do hope he finds the motivation to go on .........

Keep on keeping on :)

I do not like this term " end of life ". We know we all have to go one day but classing someone as that causes more problems as shown by Sweethings post.It's like telling someone you're on Death Row. I think a different term should be used. End Stage could be used as End Stage can last a few months to a number of years so makes people feel they can carry on.

I agree Puff, I don't like the "end of life" phrase - sounds like an American invention to me, it's not pc to say death any more, even though it happens to each and every one of us at some time or another! I think "end stage" is a bit better, it does imply there is more time left than you think with "end of life".

we are all on death row and have been since the day we were born.... its not about dying ....everyone will ... its about living ... with knowledge that we will die ... so live wisely, live well, and make the most of all our days, however ill we are

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Yeah I agree with you end of stage is more uplifting than end of life

Thank you all for your very kind comments. My husband has always given the orders in our house now I have got a man who has turned into a child, demanding everything. Since he read the end of life leaflet I cannot make him see that it does not apply to him, if he gets off his bum that is, but there is no way he listens. He was seeing a man from Mental health at home but this leaflet has really upset him. I cannot get it through his head that he has to walk and exercise otherwise he will fade away.

I am new to copd but for some time my sister had it for along time

when i was told i had it .two weeks ago all i thout about what my sister said to

me live liFe to the full.and do it.not look back .as have been in a wheelchair for a

long time .when i told the wife ihad copd she tried to rap Me up in cotton wool

As i have been in on the go all my life i told her we will live it day by day .and that is what you want to tell him.i hope he starts to move around and gets out to places

the two of you like going good luck

The thing is Sweething that as carers we have no control over our partners illnesses But when like your husband it is written in black and white there whole world falls apart. Now is the time to ask for someone to come in and talk to him about how is feeling .Hes self worth is at rock bottom . Its like he is no longer this tough strong beat his chest man any more. He Needs counselling it will not solve all the problems but it will help him to see things a bit clearer.

This is very sad Sweetthing. Has he been assessed for depression? Maybe some anti depressants may lift him out of this black hole. Speak to the BLF helpline, from what I've read they're excellent and may be able to help in some way or point you in the right direction. I dread to think what he is going through, and what it is putting you through, emotionally and physically. On the other hand, it's his life and if he is adamant he is not going to help himself there is not much anyone can do. You must be a very strong lady Sweething to be coping with all this. Best wishes, Libby

Thank you so much libby He has refused depression tablets in fact he goes his own way on everything, my thoughts don't matter at all, he says he is the one ill and I have to live with it, for better or worse. I rang my son up tonight in tears and he agrees with you, if he won't help himself then there is nothing I can do.

I suppose you've tried threatening him with a nursing home as you can't cope? He probably wouldn't believe you if you have. Maybe it's time to really look into it, although I am sure it will be a heartbreaking thing to do. It's so sad that he's bringing you down with him, whereas if he'd just try to help himself you'd both be so much happier. I know you're not well yourself and this is already having a serious effect on your wellbeing. Take care. Libby

It must be very very difficult for you

I believe in facing facts... difficult but once done I think makes life easier

Maybe you could remind him that we are all going to die .... life is terminal .... We cannot choose the means of dying (heart attack/stroke/cancer/COPD), or the time (tomorrow/next month/next year etc) but we can choose the 'how' we meet death, with strength for our families and for ourselves or with fear and desperation which will take our remaining time away in misery and panic.

If your husband has never dealt with the fact that COPD is a terminal condition then I imagine the leaflet was a shock .... but surely he knew it's terminal... the end of life does apply to him if he has COPD, as it apples to us all who have COPD, there is no cure, he may die of something else of course, so maybe that's a consolation.

I was shocked and still am when I read the end of life stuff .. v scary and unpleasant... but would be just as shocked if I read it for any other condition .

We will all die... it's a case of when not if and we need to know that in order to celebrate the fact that it's 'not now' or 'not yet'

Bolilly x

Oh sweetthing, I often think of you in your house with your hubby, feeling alone and at your wits end.

Beacuse I saw you rpost a while ago saying you hadn't received your pack, I told them I hadn't had mine too but it came today while in work so havn't had a chance to have a look. Like its been said, ring the blf tomorrow as you are not happy about the leaflet. They will be able to explain why.

As much as it hurts us, we have to take a step back sometimes in order to move forward. Give your husband time to digest the information and let him react however he wants. You have said before that your husband is very controlling and maybe this is his way of keeping hold of the reigns in a way. He is unable to do hardly anything for himself so by refusing to be helped is his way of being in control. All you can do is be there for him when he needs you and believe you me sweetthing, that time will come. And he will ask for help, believe me there too.

I like to think that if he is able to be stubborn, angry, nasty even although that isn't right and I'm not condoning it, it shows there is some fight in him and if he has the energy to be like that, all is not lost. As long as you continue to enjoy your grand children and have time out yourself, you got to keep your spirits up as best you can.

Thinking of you xx

Sweetthing I am so sorry that your husband is feeling this way. I have sent you a personal message which you an respond to or not I don't mind but I do think you need someone to talk to your husband and yes you should also tell BLF about their leaflet

Janet

he sounds a very selfish person.you have a life as well best wishes terrzy

Hi Sweething, from the threads in this post it appears that you have gone over and beyond the call of duty as wife, nurse, friend, carer. Your husband may wish to control all life around him, but unfortunately, none of us have anything like the power to do so.

You don't speak about the reality of what your husband is capable of- but if he can walk, talk, get himself something to eat, attend to his toileting, well, that is considerable self care and good stuff.

So Sweething, how do you look after yourself? You are equally as important as your poor husband, and just as entitled to be healthy and happy. I leave you with one question, which is, what do you need to do to take of yourself? And when you have the answer, don't just think about it, do it! Do stay in touch with us here. May you be happy x

He can walk, but won't as he gets breathless, he can eat okay, he takes his own medication uses a urinal, we are getting a stairlift put in for when we go to bed. He has been told by the doctor, physio, matron if he does not get off his backside he will waste away. This is what I am up against, he will not try.

Thank you so much for caring.

Hi Sweething. What a miserable man!! I would say to you that you need to give him a hard talk and tell him that you are just as important and although it is sad he has COPD, you have your life to live as well. You need to point out that you will help him but he has to do things for himself and help himself. If he is incapable of his personal needs you need to talk to his Doctor and get some help - at this rate he is going to make you ill!

You have to be able to say to yourself, "You are not going to make me ill and that it is that"! Easier said that done I know, but he needs to know that he is an adult and he has to take some responsibility for it.

It sounds very melodramatic as though he was looking for a reason to retreat to bed - we are all dying - thats the natural order - we will all die. Some of us will have the chance to say goodbye and some of us won't. Just a thought - is he religious - or has he been? Maybe a local priest or similar could help him.

BUT look after yourself. Truly - I look after husband who has moderate/severe COPD and I get exhausted. I have learned to make time for myself and go out a couple of times a month with friends - sometimes it is quite hard and sometimes he has been too ill and I have had to cancel. I am not sure he liked it to start with but it is something I have to do - there is life other than COPD! It is such a relief not to have to talk about it and live it for a few hours. Sounds selfish but it keeps me sane! Even if you visited the library for an hour just to get yourself some time for you. Take good care. PLEASE look after yourself. TAD xx

Hello and thank you, I have decided to call off my 70th birthday 'do' as he will not go and I honestly don't feel like enjoying myself anyway, since he received the stupid pamphlet about dying he has taken to his bed. I am at the end of my tether now and honestly do not know what else to do.

Hi Sweetthing

I have spoken to our Membership Officer for clarification.

New members receive an information pack that contains a copy of Breathing Space, some general information about the BLF - and then any information about the person lung condition that they have requested . The "Coping with the final stages of lung disease" leaflet is not sent out as part of the pack - unless someone asks for it.

So I can only apologise if you have received the booklet if you didn't request it - it was a mistake on our part.

Regards

Mark

Hi Mark,

These end of life phamphlets HAVE been sent to various members within my group. Also I was sent a pile to hand out to my members. I am sorry, but I binned them as I felt this was wholly insensitive, particularly for those who are newly diagnosed with a lung condition. I concentrate all my efforts on keeping the group well and have many who have made it to their late 80's, my motto being there is always someone much worse off than we are. Hope my comments don't cause offence

Thank you for your support in this, receiving this pamphlet has made my husband think he is in the last days of his illness and he has been in bed now for two days, I am pleased you have contacted Mark Pilling, because this fiasco has really made my life terrible.

Thank you, yes it was in the pack and was NOT requested because we did not know about it. If I had wanted it I would have asked for it to be sent to me, the carer, and not my husband who is having problems with everything and reading this leaflet has made him take to his bed for the past two days and he shows no sign of getting up he says if he is in the last days of his life he wants to spend it at home. Noway should this have been sent out to a seriously ill person.

May you be happy. May you all be healthy, May you all be at ease.

hi sweetthing im afraid your husband has given up the will to live, i saw this in my home nursing and hospital, above all dont feel guilty he knows what he is doing, but is ou that is suffering from his behavour before he was ill,i know it has been very hard for, keep your pecker up i am thinking of your often.

did you go for your birthday meal,i hope so

love jan xxxxxx

Hi, thank you so much, my 70th Birthday meal was this Saturday coming but he won't go, he says it is too hard for him to get ready. I have all his clothes ready for him, but he says he has not got the strength to get dressed. I have told my sons that it may be called off as I cannot enjoy myself with all our family and friends around me knowing my husband of 50 years missing even though he is awkward.

The way things are going he won't be here for my next birthday so I don't want to remember a birthday party with him missing before I have to. Our sons are annoyed with me for letting him rule my life but they don't understand what I have had to put up with these last 12 months since he went downhill. I sleep in a different bedroom with the door open so I can get a bit of sleep rather than listening to him coughing all the night in his sleep. I am still up and down getting his nebuliser sorted out so am shattered during the day, I get up in the morning and peep round the door expecting to see he has died in the night, it is now getting to the state that I would not be surprised if he had died as I am living on a knife edge all because he won't try and exercise. He is throwing his life away for nothing rather than put himself through a few walking exercises to build himself up. His breathlessness is down to lack of exercise, I have tried to drill into him that if a very fit person, with no illness at all sat down day in and day out then was asked to exercise they would also be out of breath until they got going again. The doctor came this week and told him to use it or lose it.

hi sweething, i can understand if you dont go out for a meal, has your husband been like he is all is life, if he doesnt want to do anything to help hiself there is probably he wont change now, it must be very tyring for your to have to get up in the night, i hope you will have some relief. i will wish you a happy birthday, and i will be thing about you

love jan xx

Hello and thank you for your comments. I told my husband that I was going to my party with or without him. After a lot of messing about he said he would go if I got everything ready for him so he didn't have to move from the settee, as he said he could not face the stairs.

I got a bowl of hot water, towels, razor, etc. etc. all clean clothes for him to put on, I had to put his socks and shoes on and help him with his tops, he wanted me to wheel him from one room to another so I was shattered. When we got home I had to do the reverse of everything plus take the dog out for a walk. I made supper and I wheeled him to the stairs, once he had climbed the stairs I got him into bed and I went to bed, half an hour later, he was calling my name, thinking he was ill I dashed into his bedroom (we sleep separately now as he says he needs the space), he said 'for gods sake you have left the garage door wide open'. I said for one night it won't matter, but he insisted he wanted it closing and he said he couldn't understand why I had left it open. I told him with everything I have had to do, I don't make any wonder, but I had to go down in my nightgown and close the garage door.

From the sound of him you would think he was paralysed from the neck down but he isn't, he won't do anything for himself as he does not like getting breathless so rather than that he will sit on his backside all day long and run me ragged. I am now 70 and my family thinks it is just not on how he treats me and have told me to get my life back as he can't do anything about it.

When the weather picks up I have told him I am going out with some friends and he says you are not, you can't leave me, well I have had enough of him, if he doesn't like it he can go into a home and make their lives miserable. He says the house is in his name so I told him that is now fine, since all this started I have transferred all our savings into my name and changed my will so he can stick the house, as when he dies I will get what is left of the house and I will have my pension and do just fine.

By the way we had a lovely time, I think grumpy enjoyed himself but he said I was drinking too much, I had one glass of wine and topped it up with sparkling water, he knows I don't drink but he was just stirring again. He can't go a couple of hours without trying to run me down in front of people.

happy birthda sweething, my brother was the same, he use to have a buggy, and one day it broke down in the road, he started swearing at his wife, like you she had had enough so she left him there went home round the corner and phoned her to two sons said what she had done and they came fetch the wheel chair and took him home, he asked why she did and him the truth that she will not tolerate his swearing. he was a very contankerous man but Daph went out on her own after that.

have you not got a stair lift, that would help him a lot,, it did my brother, his emphsema and my omy how difficult they can be. a home is one possible answer, i think you are an angel, just like my siser-in-law who both my husband and i are very good friends with, think about the stairlift.

what sort of dog have you got we have two dachshounds one with is in the royal college of veternarn , he was operated on friday which too 5hrs he crushed the vertbrae in 3 differnt places and we have know idea how it happened

my husband has got his cancer of the prostate back so it was a very stressful day on friday am afraid we had a heated words.

my health heath is not good, and i dont espect a barrage of nasty words. now if you neeed to e-mail to me do

love jan xx

Thank you for your comments, I have threatened to push him onto the motorway, or strangle him with his oxygen tube but I don't fancy spending the rest of my life in prison so I have been watching all the CSI programmes for tips. Seriously though, I told him last night that I was fed up with his bad temper and that I had had enough of him. He said he would go into a home then but it would mean selling the house as it is in his name, so I told him to do what he wanted as I had transferred all our savings into my name. We are getting a stairlift and I have told him that any more moaning and groaning I would stop it half way up and he can stay there all night.

oh my love , how tactless, some folk can be, when at 34 I was told my 1st hubby was dying , the surgeon asked me to go to outpatients , I waited for 2 hrs , then when I saw him, he said [will never forget his words] "has he thought of cancer?" when I stammered no, he said "he should he has it, end of conversation, Doctors are not Gods, tell hubby, I worked for yrs running homes for the elderly, one lady , was 87 in pretty good health , except a mild case of parkinsons, her name was mrs Meredith, well, we talked about my husband one day, [ her fingers lol were yellow -woodbines]ans she told me her much loved hubby died at 34 yet....never.... smoked a ciggy in his life, she smoked 60 a day!!!!! I truly believe [it,s hard ] but life in the now ! or the moment, you or I could walk out of the door tomorrow and get knocked down by a bus, tell hubby this, it,s in Gods hands not ours,love to you jude

Hi Banner, Thank you so much. I have told my husband all this, I have said that just because I am fit and well, he has to think about me running myself ragged looking after him, because if I was taken into hospital, there would be no-one to care for him and he has to stop thinking about himself all the time. All he does is moan about his illness, I tell him he is lucky to be still alive and to stop being a miserable sod and get off his backside and try to do things for himself. I have told him I have lost patience with him because he is acting as though he will die tomorrow.

sweetthing -

so sorry to hear that you are going through hell - all because of a leaflet.

I didnt get this leaflet but read up on the internet about emphysema, yes its terminal but so is getting knocked over by a bus!! but if you look after yourself you can go on for as long as you want !! most things on the internet state over 20 years after diagnosis.

Can i ask if your hubby was an active man ? because i am still quite young (51) i was not ready to give up the ghost yet and wanted to squeeze as much in with my granddaughters as i can, i find it hard to drive because i get pains in my chest when i turn so i sold the car and got a mobility scooter, meaning i kept my independence, like your hubby it takes me up to an hour to get ready but if i took my time and off i go, racing round like a four wheeled version of Barry Sheen !!!!!

some days i cant get out of the chair and others i can but there is no way i will lose the precious time i have left just waiting to die - i will die one day-we all will - but whats the point of waiting for it!

It looks to me like he is feeling sorry for himself, i understand why but he needs to understand that he can wait for up to 20 years to die, all he will get is sore bits from laying in bed - also with COPD depression sets in.

Maybe its time you gave Mr Meldrew a good kick up the you know where, make him see that feeling sorry for himself will only make both your lives miserable,

so pleased you went for your birthday meal - he obviously can't see he has an amazing wife who is dedicated to caring for him but remember you have a life too! get out and enjoy it.

sorry to be so harsh but i hate the thought of you wasting your life for a grump.

Thank you so much. I wish he was like you. He was a very active Diy man, did everything himself, but I was his labourer ,only because it was cheaper than getting people in. He can drive hundreds of miles with no ill effects it is just the walking about that gets him breathless, but that is because he won't walk anymore, he is out of condition.

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