BEAT THIS IF YOU CAN

My husband, grumpy, has COPD etc. etc. etc. On an evening, every single evening, this is my job, take up his spare oxygen cylinder in case the concentrator blows up, take up the nebuliser, his tablets, his drinks, his flask of tea, turn the bed down, pile up his pillows, draw the curtains and then go back downstairs, take the dog for a walk, then lock up, turn the heating off, and then get him in the stair-lift and hold the oxygen tubing whilst he rides upstairs, wait downstairs until he gets off the stair-lift then go upstairs and wait for him to come out of the bath-room so I can go in.

I then climb into bed (separate bedrooms now) and just start to get comfortable when he starts calling my name, I jump out of bed thinking there is something wrong and ask what the trouble is, he says, 'YOU HAVEN'T TURNED ON THE BEDSIDE LIGHT'.

I am such a mug. 70 years old and getting older by the day.

29 Replies

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  • Hello Sweet Thing

    No, you are not a mug! You are a caring person who is being used by a person who is probably scared of what is happening to him.

    I have COPD and my husband looks after me and I wouldn't dream of treating him in the way you say that your husband treats you.

    You must let your husband know that you are his saviour, you are the person who tries to make things as good as possible for him and that he should treat you with more respect.

    None of us should bully the person who cares for us.

    Was he always grumpy or has he become grumpy just since he was hit with rhe COPD? Perhaps because he is afraid of what is happening to him he goes on the attack - you being the person he attacks. He really needs to know how lost he would be without you. He needs to be told that it is not at all in his interests to be mean to you.

    Perhaps you should go off for a weekend away - it would work wonders.

    I wish I could turn up at your home and let him know just how mean he is being!!!!

    Love and hugs

    Annec

    xxxxx

  • Hi sweetthing12. Do you mind me asking how bad your husband's COPD is ?

  • He has COPD/Bronchiectasis end stage, he is on oxygen 16 hours per day, 2 litres per minute BUT his oxygen cannisters for when he is walking has just been increased to 5 litres per minute as his sats drop down to the 70's on exertion.

    When he is sat down you would not think there was anything wrong with him, but as soon as he stands up he cannot breathe.

    We bought a stairlift and are now buying a mobility scooter as it is gettingtoo much for me pushing him around in the wheelchair as he is a large man.

    Thank you for your comments.

  • Does he try and keep mobile ? I have only emphysema. I am Stage 4. I'm not sure if that is the same as end stage but still, it's only a number. I'm on 15 hrs/day only half litre though. I still work and get around not too bad but obviously have to stop and get my breath.We are all different. If he can try and get a bit mobile I'm sure it would help. It's good of you to help him but asking you to turn off the light is taking it too far, if you dont mind me saying so. I hope he is not using his illness to take advantage of your good nature.

  • The problem is he is frightened of doing anything at all and that is why he is dependent, if he did more then I am sure he would feel better but like I say, he starts to panic and if he can't see me when it happens, well everything goes into emergency mode.

    I would love to have a day out to myself but he has put the kybosh on that as he says 'what if something happens whilst you are out it will be your fault for leaving me on my own.' I tell him I should be so lucky.

    If I left him he would have to go into a home as from the day we got married (because I only worked part-time, he said,) I had to do everything as I had time on my hands, so I did and still do everything, even handle all the money, he has not got a clue how much we have in the bank and leaves everything to me.

    I tell him he should have been royalty as he gets the same care and attention a member of the royal family gets.

  • I must admit my partner does all our finances too !

    I'm sure if he got more mobile he would panic less. I feel it's unfair and sad that you have no time to yourself. Try telling him you are going out for half an hour and see what happens.

  • That is what he has been told to do. I have told him that he is 100 times better than he was last year and once we get the scooter our lives will be a lot better and he will feel less like an invalid, the one we have looked at can be re-charged through the handle and just plugged into the wall socket, so we can stay out longer instead of having to get back after a few hours. We have emailed one or two restaurants and asked them if we can plug it into their mains whilst we are having a meal and they say no problem, people always plug their laptops into the mains to re-charge them so there is no problem with disability scooters. This means we can go out in the morning and stay out all day, whereas before going out was terrible as after an hour pushing him in the wheelchair I was absolutely on my knees and my back and arms ached the day after.

    I would like to thank you for your comments and interest.

  • I have an idea. If he wants the scooter he will have to be active enough to walk to it before he can get on it ! :)

  • Don't be silly, I would have to put it next to his chair then he can ride to the front door and down the ramp to the car door.

  • Brought back memories, Sweetthing. Only thing was, my hubby wasn't needing anything - just making sure I was there.... Bless him.

  • Oh for the love of a good woman.us fellas ey !!! Xx

  • My husband spent the last 4 months of his life having to sleep in a lounge of our house and was put to bed by carers using a hoist.Then it was my turn to settle him down for the night and like you sweetthing I had a routine. I would put him a drink by his bed put his cassette player and his talking books next to his bed knowing that he would listen to them most of the night.Once I had sorted him out I could then go to bed myself but oh how I hated leaving him alone in that room. Now tears are streaming down my face and I can't see to write anymore.

  • Hugs (((((Gail))))

    Sandra x x x

  • Hi Sweet12 , It could be that your husband is a grump and likes to have you run around after him or it could be that he is scared stiff of his illness or resents being unable to do things for himself so he goes overboard in getting you to do things for him ( man flu syndrome ) . Either way it would good for him to do some things for himself and get his self respect back along with some respect for you . COPD can be a scarey condition depending how bad it is , i have had it nearly all my life so i didn't have good health to lose , just a gradual decline , i was able to marry and have children , go to work and be independant ( perhaps a little too independant ) , i dread being so incapable as to need someone to do any of that for me .Perhaps your husband is that poorly ?? only you know that , but it would be really good for him to do things for himself as long as he knows you love him and would do it if necessary , otherwise you could end up resenting him big time xxxx best of luck and i hope all works out well for you both . I would love to be able to think that if i really couldn't do things someone would help me out of love not necessity xxxx.

  • Buy him a touch lamp!

  • I care/ live with my Mum who has Copd your scenario is very familiar, but the bit that I don't get is the concern that the oxygen concentrater might blow up! Has it happened before? Surely if it did happen needing extra oxygen would be the least of your concerns, but if I'm wrong have you thought about asking your supplier for an extra cylinder that could stay in the bedroom? xx ps Mum has a touch lamp!

  • Hello and thank you for your comments. He is concerned that the concentrator may stop working through the night so he wants to have a backup by the bed, hence the reason I have to take a spare cylinder upstairs. We have loads cylinders, but, he uses them in the morning as he says the 2 litres per minute is not enough, that is why we are waiting for another blood oxygen test to determine how high he has to go, they are talking about 4/5 litres per minute. It will mean a bigger concentrator that is a free-flow, which means he can use 2 litres per minute when sleeping then alter it to 4/5 litres per minute when walking and using the bath-room, and it will enable me to leave a cylinder upstairs in case the concentrator did break down in the night and it would offer him peace of mind knowing there was always a back-up to use.

    This is the problem with him, it is all 'what if's'. I say that the biggest problem he has is 'what if I dropped down dead with all the stress he is giving me', that is the thing he should be thinking about, if I wasn't here then he would be on his own.

  • Sweetthing, I bet you are fitter than some women half your age! just think grumpy is helping you stay spritely and trim and alert at all times!How about getting one of those baby intercom things so you can keep an eye on him and he wont have to shout you.....I get yelled at for being out of breath!

    love you,huff xxx

  • Hi, to be honest, yes I consider myself to be the luckiest woman on earth, I do not feel any different to what I did at 35 years of age, I have no aches and pains, would love to go on a round the world cruise, would love to go to Australia etc. etc. I still buy clothes, jewellery and makeup even though I can't go anywhere. The only thing that is killing me is pushing the darned wheelchair, with a big hulking man in it, roll on the mobility scooter.

  • Thank you all for your comments, I do think you are right, he hates for me not to be in hearing distance of him and expects me to do everything, the matron says he could make his own cups of tea etc, but he says he can't.

    I really have made a rod for my own back by smothering him when he was first diagnosed as we honestly thought he was dying last year and would not see last Christmas but once he was put on the Arythromycin three times a week he is now a new man and has had no infections since then. He is on oxygen 16/7 2 LPM and when he is sat down you would not think there was anything wrong with him, but the walking side of it has to be 5 LPM as his sats drop too low. We are now in the throes of buying a mobility scooter, we have just bought a stair-lift and hope now that instead of me pushing him everywhere in the wheelchair at least I can go into a shop whilst he drives into another shop instead of me having to take him everywhere in the wheelchair. He tried one out the other day and he was like Sterling Moss, he went hell for leather down the high street and really enjoyed himself. I shut my eyes he was going that fast.

    We think he is frightened of being alone, now the better weather is here and he can sit outside in the garden his manner has improved he doesn't seem as depressed. We are talking of going to the seaside for an odd day and when we get the scooter it will be a doddle. I was dreading having to push him in the wheelchair as he weighs a ton.

    He is starting to laugh a bit more as he says when he was on the scooter he didn't feel like a man who was at the end of his life (he is so dramatic) but in the wheelchair he felt old and disabled, i told him that if I have to push the damned wheelchair for much longer, I will be at the end of my life too.

  • I don't usually agree with what your husband says but with one thing I do. I love my mobility scooter because like he said in a wheelchair is horrible, it is as if you are tied to the person pushing and have to go where the pusher wants, and you feel dependent on them which is horrible, I am sure he will enjoy his scooter, but tell him to watch out for ignorant pedestrians who just walk in front of you! Keep smiling.

    Carole x

  • Thank you, he tried one at the week-end and he was off like a bat out of hell, I can see he is going to be a total pratt on it. He said 'I don't think 4 mph will be fast enough', so I told him if he thinks I am going to be running at the side of him he has another think coming.

  • Tell him he is a very lucky man to have you to look after him and not to push his luck - turn off the light for goodness sake - you'll have to be cruel to be kind - and tell him to do it and other things himself sometimes - I too have copd (emphysema stage 3) but luckily am not too bad now I have my oxygen however I am also carer for my 84 year old mother who I am now living with and who depends on me for almost everything although I will not make her a cup of tea as it is the only way I know to get her off the settee and walking a bit - if only to the kitchen - cruel yes but do not want her legs to give up completely. I am only 59 now and when my condition gets worse there will be no-one to look after me (no husband, no children) - so as I said he is a very lucky man. Good luck to you and hope the scooter works out and anytime you feel like a moan this is, as you have seen, a good place to do it. xx

  • Hello, thank you for your reply, I am 70 years old and as fit as a fiddle, I am extremely lucky and thank god for my good health. I was ill for 12 months, lost 3 stone in weight for no reason at all and saw three different specialists, had body scans, tubes down my throat, blood tests and nothing showed up as being wrong, my husband still wanted everything doing for him even though he knew I was ill.

    All of a sudden everything cleared up, it has taken me until this February to get back on my feet and so I got him a stairlift, and now a mobility scooter is coming soon and I have told him that we are going to start going out for the day to the seaside and spend a few hours there, I couldn't face it with the wheelchair as he is a big man and it was terrible trying to push him in it. He can drive for miles without any problems, he can sit down for hours without any problems, it is the standing up and walking that is the problem as he rarely does it. I know he is unfit but he won't admit it.

  • Hi Sweetthing, I have a lovely husband who helps me all he can even though he has an injured back, but he goes out and I welcome that. I was wondering if you have an age concern near you, they some times have helpers who will come and sit with your husband for a few hours to give you a break if not the local hospice will some times help by letting him stay for a week, so you can rest and get your health back. You should speak to your GP who can advise you better. I am also on oxygen 24/7 and have a back up supply as we have lots of power cuts but I have to get on with it, I think he needs some one to talk him through his fears. Take care.

  • Hi sweetthing I might have a laugh and joke about my wife but I wouildn'y dream of treating her the way you are.

    Richard

  • I tell him to do things but he says he can't and no-one is as ill as he is, that is the problem, he thinks that no-one in the whole world with COPD is as ill as him because they can go on holiday etc. and make themselves a meal or a cup of tea.

    I have told him to just get on with it, he has this illness and there is not a darned thing he can do about it, he has to try and help himself and not just sit on his bottom day in day out and that even though I am fit and well, I am still 70 years old and his illness is also affecting me as I am having to live the life he is living as well, and to me that is 100 times worse because my life is being wasted because of his selfishness. Why should my life be thrown away because he won't try and do things, he is out of breath because he sits or lays down every day, okay he will go out in the car to see our grandchildren but it is me that has to get everything sorted, his clothes, his oxygen, his car keys, his water, open this, close that. get this, get that, I push him in the wheelchair to the car and he climbs in. It is the same coming home, carry this, fetch that, close this, open that. take the dog out, get his tea, help him take his clothes off, help him put his night clothes on, take stuff upstairs, turn his bed back, stack his pillows it is an endless, thankless merry-go-round.

  • my father was just the same ! on a visit a few weeks ago my husband was at theirs for half an hour and my father shouted mu m 14 times and my mum is 80 !! but she would give anything to be back there and so would we ,we lost him to c.o.p.d three weeks ago ,a horrible death

  • I am so sorry you have lost your father. It is so difficult being the sole carer for someone. I do feel sorry for myself because from morning 'til night I am at his beck and call, I haven't been out by myself since January 2012. He gets nasty and calls me names if I don't do something fast enough, I understand your mum and yourselves missing your dad, but I find it so hard and dread getting up every morning knowing it is the same old routine and what hurts the most is that my husband expects it of me and does not care if I feel tired or have an off day, things must be done his way, when he wants it doing or there are arguments. I am up at 6 am every morning sorting things out, and then the other night he told me I had to stop up with him until 12-30 am as he wanted to watch a boxing match on the laptop when I said it was too late I was called a selfish b###h. I am 70 years old and have not been out by myself since January 2012 as he won't let me leave him. I have lost contact with all my friends as they don't like the way he treats me and they tell me to leave him.

    Please accept my condolences. You sound like a loving daughter, I have two sons but they expect me to child-mind as well, all I do is look after other people but no-one looks after me. I am fed up.

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