I have decided NOT to cut myself off from all you wonderful caring people on this website, I have still been receiving lovely comments and advice so I thought I would be a complete idiot to turn my back on such caring people.
The reason I was stopping coming on here was because I felt I was a fraud, everyone was giving me sound advice and encouragement but I did or could not do anything about it. He doesn't need a carer as he is making himself worse because he won't exercise, he sits down all day or stays in bed.
He started being ill on Christmas day and is still in bed now. He is on the correct antibiotics, I checked with the Matron this morning, he is on oxygen and nebulisers, but the problem is because he is not moving about, every time he gets up to use his urinal he cannot breathe as the gunk on his chest moves and clogs up his throat. If he did his exercises or even walked about more he could cough the muck up and get rid of it, instead it is just accumulating more and more on his chest. I was up through the night and had to go down and get a new oxygen cylinder as he has started using it when he is sat down, he was assessed for ambulatory oxygen only, to be used when he is walking about, but he is now using it willy nilly.
I have told him that he is going to have to start doing things for himself otherwise he will become completely bed-bound
I feel today (with my family especially) alone, as not one member of my family has rung me to see how we are, they know he is ill because we could not attend the big family boxing Day get together, and it would have been nice just to get a 'phone call from someone.
He is terrified of going back in hospital as when he was in the last time he got a secondary infection that nearly killed him and then was told there was scabies on his ward and we were given a medication he had to wash with so that is why he gets nasty with me when I tell him he needs to be in hospital for intravenous antibiotics (the specialist told him he had to go in if he started being ill whilst taking antibiotics as they may not be working).
Anyhow, thank you for all your fantastic comments and best wishes. At the moment we are plodding on and we have a specialist appointment in two weeks time, we will then have seen the specialist three times since the beginning of December, they are considering putting him on nebulised antibiotics so we will see what happens then. I have been referred to an ENT specialist because of the cough I have had since January 2012 and because of the three stone weight loss so we,will see what that brings, I have to go for a mammogram next week as the CT body scan I had showed up some abnormalities in my breasts, I am not going to worry about it, so what with him indoors and myself, we have had a lousy year so I will be glad to see the back of 2012, I don't know what 2013 will bring, but I hate any number with the 13 in it, my mum died on the 13th, my dad died on the 13th, my grandma died on the 13th, my sister was dying on the 13th and died early on the 14th so god knows what will happen this year, as long as my sons and their families are well and safe I will take what comes.
Best wishes to you all. I have made two New Year resolutions, get out more and ignore grumpy.
You're no fraud, that is easily seen form the posts you've made. You're trying to cope with grumpy, who seems to think you're his slave. That's not on, and you've stood up to him a few times now, so keep doing it.
You know you have friends here you can talk to. Hopefully your own medical problems will be sorted out for you as I'm sure you'll take the advice given and won't just let yourself vegetate.
How scary is your Matron? Hattie Jaques style hopefully - to tell 'him in bed' off about abusing his oxygen and not exercising. Stern words from someone in a position like that will at least back up what you've been telling him all along.
My wife is a home carer, she has clients like that too. It's too easy to let other people do things if they can get away with it. Sadly, she can't go chucking people out of their beds to make them if they don't want to, which is why she has a delicate wrist and bad back now
So glad you have decided to stay, you are certainly not a fraud, you must look after yourself a bit more. Hope everything works out with you with regards to your own health.
Try and get more professionals in to help, I think he needs a wake up call in regards to taking personal responsibility for his medication and excercise. Think Gordon is right about Matron. You cannot be expected to be at his beck and call all day and all night.
Don't be bullied, why should you be, I am sure you would be happy to help if his attitude were to change.
Dear sweet thing, you can come on this site and vent your anger and let off steam whenever you like, we re all here for you. I always feel better when I get things off my chest, and I don't just mean the gunk!! You take care of yourself, it's important that you are well.. Take care. Shirley x x x
Hi again and glad you're staying. Families do disappoint at times but they are probably like your husband and think of you as some kind of superwoman with a lot of respect for you but don't show it. Trouble is once you wear that mantle it is difficult to do the reverse. Now that you are feeling the strain healthwise I hope you will put yourself first for once xx
Thank you all so very, very much, Gordon57 is spot on, the Matron has told him that the next time she comes she refuses to see him in bed, she says she doesn't do stairs.
I have spoken to my husband today and laid my cards on the table, I have told him that he has to get off his backside and make himself a cup of tea and feed the dog, I don't want him cooking or cleaning, just simple tasks that will get him moving. I told him there was no way I can keep this running about up and if he does not help himself I am going to have to see about getting him into respite so I can have a week to myself. He said he was not ill enough for respite, so I said 'gotcha' you have just admitted you are not ill enough to be looked after so get up and do some walking about, I am no longer your skivvy. I told him that if he does not get moving he will be dead in three months. I have made myself clear today and he really looked shocked, I told him I am fed up with him and no longer care whether he lives or dies for it seems that he doesn't care either because if he did he would be trying to improve his health not making himself worse.
We have some oxygen coming tomorrow and the silly sod had enough in the tank to see him through but what did he do, he took it off and left it turned on and the tank was empty, he now has to stay in bed until it comes tomorrow, at least he is out of my sight. He said what are you going to do with the empty tank, I told him I would love to stick it wear the sun don't shine. He hasn't a damned clue where I put the empty cylinders he seems to think they appear like magic and when empty disappear like magic. God he's hard work.
He said to me this morning, look it's a nice day, I don't suppose you can wash the car, the wheels need doing, I said a naughty word . He said I did a lot of swearing and he doesn't like to hear woman swear especially someone my age, I told him the naughty word again and this time used my fingers to emphasise it.
I am so glad I came back, if I didn't have you lovely people to moan to I would definitely kill him.
Thats the ticket fight back, you are your own person and not a car valeter!! or any other dogs body for that matter. Shock tactics often work very well. I know it can be difficult, but take time in the day for YOU. Even simple things like a luxurious bubble bath or listening to a programme you want to hear. Take care and keep strong. We are here for you come rain or shine. xxx
" He is terrified of going back in hospital ". There's your answer,. Tell him if he don't exercise he WILL go in hospital again, no if's or but's. Try it, it may just work !
So pleased to hear that you're staying. Really hope that 2013 will be a better year for you. Try to have a word with the Matron before she sees him and tip her the wink about his antics. You have your own health to worry about and not just his and your own well-being must take priority over his. Keep us posted about how you are getting on. Thinking of you.
Thank you once again for all your lovely comments and advice, we had another ding-dong last night and he once again told me I did nothing at all for him. I told him I am stopping doing 'nothing at all for him' and see how he manages on his own.
He is in bed, I have not taken his cup of tea up so let's see how he manages this morning, I have not even been to check on him so don't know if he is dead or alive.
I will keep you informed. It is like 'War and Peace' never ending.
I can't cut down on the caring but I can cut down on doing the things that he could do for himself, like picking up his tissue box, turning the television on when the control is out of his reach, it is the silly little things that are killing me when there is no need for it. He could make himself a cup of tea or get a bottle of water out of the 'fridge. When I am in the garden, he sits in his wheelchair, knocking on the window, 'you have missed a bit', there is a weed in the middle of the path, just sweep those stones off the drive, etc. etc. I have started this morning, he is still in bed waiting for me to empty his urinal, he is too idle to walk from the bedroom to the bathroom to use the toilet. I haven't spoken to him yet, he is wittering on but here I am having a cup of coffee on the laptop.
Your comments make me realise how easy it would be to follow "Grumpy" down the 'I'm helpless road'.
It is good to hear the carers point of view, and makes me realise I can't sit and feel sorry for myself but gives me another good reason to get up and go or before I become fixed in my chair.
I understand what he is going through as I have said before, I have asthma and since January 2012, have had a bad cough and have lost 3 stone in weight, had body scans etc. multiple blood tests and now they find something 'not quite right' with my breasts and I have to go for a mammogram after the new year. I have also to see an ENT specialist as they also think I have post nasal drip. I have Sjogrens disease as well, dry mouth, dry eyes which leads to corneal ulcers and I have to use eye drops and wear dark glasses around the house as I cannot stand bright lights. I still think of myself as being extremely healthy as I can run up and down the stairs, still want to get dressed up to go out, even though I can't because of grumpy.
The reason I am annoyed and get fed up with him is because I could so easily sit down all day as walking about in dark glasses and trying to cook is no picnic, the Sjogrens disease also gives you aching bones so I take pain killers but don't think about it, it is part of my life so I get on with it. He says he hopes that my mammogram is okay because he would not be able to manage on his own if I go into hospital, all he thinks about is himself and not whether I could have something seriously wrong with me. I have to get off my backside to look after him, we were supposed to be going out for Christmas day and Boxing day but he said he couldn't go as he didn't feel well, so in the afternoon on Christmas day and Boxing everyone came to us, I was run ragged whilst everyone was sat down eating and drinking, he was fetch me this and fetch me that. When I was putting things on the table my sons were eating it and saying where is the pickle and where are the nuts, I said for god's sake, give me time to get things ready before you eat it, they had come a couple of hours early so I was still preparing things.
They all went and left me to do the clearing up not to mention all the food on the floor from the kiddies, on both days. I do not drink much at all, and since I have been stuck in the house, never, my Dry mouth makes it very painful to eat anything with chocolate in it, so what did they buy me, wine and chocolates. I could have wept.
I shop online and bought them very unusual present, things they cannot get in the normal shops, but knew they would love, it took me ages to find the exact things I wanted, then I get over the counter stuff.
I know I am always moaning, but no-one seems to give a damn about me.
You are not moaning, just telling the truth. What I was trying to say is that it would be easy for me to sit back and get my wife to do everything for me. Your comments have perhaps been a wake up call to me and other sufferers to avoid at all costs going that way.
Sorry to hear you have such a hard time, it seems so unfair when you are so ill yourself.
Thank you so much, the funny thing is, I don't think of myself as being ill, because as long as I can run up and down the stairs, still want buy clothes and jewellery and go out for a meal at 70 years of age, I am very grateful indeed and I will take what comes as it comes and not worry about it. I have had suspect mammograms before but things turned out okay, the painkillers do work so I only get the odd twinge, and hopefully the ENT will sort out this post nasal drip and stop my terrible cough which is more of a nuisance than an illness.
But you are right, by doing things for yourself you are actually improving your health and not, like my husband, wasting away.
hi sweetthing, glad your staying, i dont contribute often but you have struck a cord with me, wish you well in 2013, please try and find time for yourself, ive been there done it and now doing same again, will i ever learn, no....just too caring, so i know what your going through, all the best to you xxx
I'm sorry your whole life revolves around looking after Mr. Grumpy (and the family!), but I think by fighting back, and not doing absolutely everything for him, you're doing the right thing. Not just for him, but more importantly yourself.
It can be so easy to get down in the dumps about illness that affects everything you do, that it can become difficult to tell whether it's the actual illness, or the depression about it which is holding you back from doing things for yourself. If that makes sense.
It's like a downward spiral. By putting a stop to that spiral and not doing absolutely everything for Mr. Grumpy, he'll hopefully begin to see that he is quite capable of doing things, and that may lift his own spirits so that he doesn't rely on you so much.
Either that, or he's just taking advantage of you, which simply just isn't on. Especially as you have health concerns of your own.
Stick to your guns and keep doing what you're doing. You know him better than any of us, so go with what you feel. But don't dismiss your own needs.
Take care of yourself and please keep posting. I think it helps all of us to see things from both perspectives. And it certainly helps to offload every now and then.
Your husband really has to start moving and get out that bed. The worse thing possible is to do nothing. I have very severe copd, and yes there are times when it is hard. Plenty of times when I puff. I use oxygen dressing, and when bathing. But do not use it when sitting her at the computer typing, or watching tv. Like your husband is supposed to. Oxygen for me is when I am active. I do get through lots of oxygen. I have 8 bottles at a time, and they last me about two and a half weeks. But that is because I am very active. Sweetthing, you are going to have to keep on at him as you are quite right. When I exercise for instance, I quite often bring up all the nasties from my chest. I usually have to puff a bit first. Doing something. That gets if off and out the chest. Because by staying in the chest, it is an excellent breeding ground for the bugs that put us in hospital. I have a short blog about exercise. And lots more if you care to look through my blog. If you want take a look at bitz-and-bobz.co.uk/copd/20...
first. Keep on the site. You are not a fraud. You are a carer. And a very good one because you care
TO EVERYONE ON HERE, Thank you once again for all your lovely comments. I told him straight this morning that he will be dead by next Christmas if he doesn't get off his backside, and the sorry thing is it will be his own fault. My sympathy has completely gone for him it is now just frustration that he has brought our life to this conclusion. I told when he does die we will get on with our lives and start to live again, and if he wants to be a part of that life he knows what he has to do. I am no longer going to bother whether he does his exercises, stands up or sits down, the ball is in his court as we are totally fed up of him,I also told him, the sooner he dies the quicker I can get the house in order, i.e. get the new central heating installed, we are using convector heaters as he won't pay for new central heating, and get new furniture as he won't buy anything as he says we are too old to bother about new stuff for the house. I want fitted wardrobes in the two spare bedrooms but he won't let me have them. We have no hot water, I have to use the immersion heater our bills are horrendous. I used to natter him all the time to do this and take his medicine etc. now he can do what he wants I am just not bothered anymore.
Sadly you have no choice but to offer tough love. Hopefully he will stop feeling sorry for himself and start to do things. Because, sad as it is, if he keeps doing what he is at the moment, he will be dead within a year. With copd it is more essential than ever to take our life in our hands, and get on with life and most of all, stay active. As said in my last post, it is hard at times. But he must, sorry to say, man up and get up and do things. Sorry to hear about waiting for this and that for your house. My heating, full central heating, is on 24/7 from October till end of March. Warmth is essential and keeping the house damp free is also. We are always buying things for the house, and me, well i have hobbies, photography is one and that gives me a reason to get out and about. I really hope tough love gets him motivated. All the best and hopefully 2013 will be a better year for you Maybe a call to the BLF helpline to talk with an advisor would also be a good idea as they can offer a lot of good advice
Glad you are staying on the site sweetthing as I do like to read your blogs. I am a carer too and I don't think I would do very well if Pete was like your other half. He knows that he has to move around no matter how ill he feels otherwise the muck just gets stuck. I do so wish you well and hope that 2013 will be a better year for you and hubby. I have seen men who just give up and expect others to run around after them and it is not nice to see. You take care of yourself too and I hope your health improves. Carers need caring for too. xxxxxxxxxxxxxxx
Thank you for your comments, we had full central heating until it broke down and needed changing now when I come downstairs in the morning it is very cold until I put the convector heaters on in the three rooms then we are very warm indeed, I come down in a full length thick dressing gown with hood, we do have the heater on on the landing 24/7 so the bedrooms are warm but it is so old fashioned and expensive as we have to use the immersion heater to warm the water. He refuses to have new central heating installed.
With regards to speaking to a BLF advisor, it would be a waste of time as we have a Matron coming to the house and she can't shift him and I think is losing patience with him because he doesn't help himself at all. She is doing all she can and all he can say is I am not well and can't walk or exercise.
He got up at 11.30 am this morning and has not moved since, it is now six pm and he will be there apart from using his urinal which is next to him, until he goes to bed at 11 tonight.
This is my life, I have sat in the front room this afternoon as I cannot bear to talk to him as he never stops wittering about his illness. I have no patience whatsoever anymore, if I thought that the next 12 months would be the same as this last 12 months I would have a nervous breakdown.
Anyhow best wishes for a healthy and happy new year.xxxxxx
Hi I am very glad you are staying Sweetthing. You are definitely not a fraud and don't you dare think so! Haven't you got any family or friends you can go out with? You don't have to have no social life because your husband does not want one. You need to take regular breaks from caring or you could become ill yourself, which wouldn't help either of you. Take care.
Auntymary xx
Thank you so much Auntymary, I think the year 2013 will be make or break time for him as I told him straight yesterday that if he doesn't exercise and more gunk accumulates on his chest he will die. Well now it is up to him, after the New Year I am starting to go out and leave him as he is not taking me down with him.
Have a great New Yearxxx
Hi, yes, we are lucky we had an extension built years ago, which gave us two through lounges and a dining kitchen. I now, at 6.45 pm, go into the other room and leave him until 10 pm. I keep a low profile as if he sees me he wants something. We had a family meeting over Christmas and I told them all that their dad would be dead before next Christmas if he doesn't pull his finger out and exercise. It really struck a cord with him and he was really upset about it, I told him there was no use in feeling sorry for himself as he was killing himself by sitting on his bum all day long. I told my sons that after the New Year, I am starting to get my life back and if he doesn't like it, he can lump it. I don't mind being up two to three times each night hitting his back to help him get the gunk up, but during the day, if he walks about, he could get it up more easily than if he was sitting down all the time then perhaps his chest would be clearer when he went to bed.
I don't mind doing the cooking and cleaning, I have done it for nearly 50 years, it is the fetching and carrying and the not bothering whether I feel okay or not that gets to me.
I told one of my sons yesterday, they live in a lovely little house that is now getting too small for their growing family, that when their dad dies this coming year, I will sell our house and buy theirs then they can get a bigger one. You should have seen my husbands face, I told him that he will be dead if he doesn't help himself, so keeping my fingers crossed it sinks in.
Anyhow, thanks for your lovely comments, and I wish you a happy New Year.xxxxxx
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Follow up -back to Fostair - hooray.
Have we all gone back to the playground 
one step forward two steps back
Shuffling back to paradise 
Back in Hospital with this nasty infection.
