I wrote a blog about my husband coming home from hospital yesterday and that I had been up all night with him, sleeping at the bottom of the bed.
Well, today at 5 am I was up with him because he couldn't breathe, running backwards and forwards for this, that and the other. At 12 noon the same thing happened again so I said 'sod' it I am calling an ambulance, he called me all the names under the sun but I stuck to my guns as I didn't have the energy to spend the day running up and down the stairs and thought if he was in hospital I might get some peace.
The paramedics told him he desperately needed to be in hospital as his oxygen levels were low but he refused to go, so I said, I am his wife and carer and I am telling you now, that if he refuses to go with you, I am wiping my hands of him and will leave the consequences in your hands. They said they couldn't force him to go, so I said to my husband, you either go with them or you die, it is up to you, I am at the end of my tether and can't take anymore. It took them an hour to get him in the ambulance. I said I would ask my son to go and visit him in the hospital as I was too ill to go.
At 3 pm. my husband rang me to say he was coming home, the doctors said keeping him in hospital would not change anything, he had oxygen, nebulisers and his medication at home so there was no need for him to be in hospital. I rang my son who brought him home and it took him ages to get him into his chair-lift, and by the time we got him in bed it was 7.30 pm. He wanted this, he wanted that, I was up and down the stairs like a yo-yo
The doctors at the hospital have played heck with him for not taking his antibiotics when he came out of hospital, I found out this morning that he hadn't taken them as he said there were too many side effects.
I have told him that I am sleeping in my bed tonight, and not to call me. Whilst I was getting things sorted out he even had my son bring the wheelchair upstairs so when he needs the toilet in the night I can push him in it.
Oh dear Lord! I feel so sorry for you. This situation seems to get no better for you. I am at a loss as to what to suggest to you that hasn't already been said but I will be thinking of you. Keep strong, don't let him push you around and keep us posted. x
you have to move out sorry but if your son can't even make him see what he is doing to you then there is not hope and you will be the one leaving feet first not him. I really do feel for you and I hope you do not think I am being too harsh but go before it is too late
I quite agree with you Janet. If he can't even be bothered to take his own medication he doesn't deserve anyone's help. He is playing Sweetthing like a fiddle and doesn't deserve her!
I agree with Janet and Granny Bell - it would be a good thing if you moved out. Of course, it depends upon whether you have somewhere you could go.
You must think about yourself, sweetie. I'm sure that if you end up in hospital it won't do much for your husband (although it would serve him right!!!).
You must be a very caring person. If my husband treated me the way you say your husband treats you then I would be long gone!!! Your husband is using emotional blackmail - it sounds as though he has 'conditioned' you over the years.
Please go to see your GP and ask if he/she can arrange a care visitor, or something of the sort, to see to your husband so that you can, at least, have some time to yourself.
All in all, the best thing you could do is leave your husband.
I've been thinking about you a lot over the past few days and I wish that I could do something to make your life better.
Lots of love and hugs
Annec
xxxxx
Hi Sweetthing,
I don't know what to say. I think you should be starting to put yourself first. His needs will have to wait. It sounds to me like he's acting like a spoilt child who wants attention NOW and you've been at his beck and call on demand. I'm sure there are a lot of things he could wait for without him coming to any harm, and you need time to yourself to do what you want. I don't know your circumstances so really don't want to give advice ... All I can do is tell you what I would do. I'd make sure that what he genuinely needs is close to hand before going downstairs, then if he shouts for something tell him he'll have to wait and the more he shouts at you the longer the wait will be. I'm pretty sure he'll get mad, but like training a child he'll learn soon enough. For things like a cup of tea, a meal or a newspaper, if he didn't say thank you I'd take it away again. I also think that seeing about some sort of respite care for him would do you the world of good. Treat yourself to a massage, or some reflexology - something that is solely for you and relaxing, and then speak to your doctor about what's going on. No one should be treated the way it sounds you are and you have your own health, physical and mental, to consider.
I hope that now your son has seen what it's like himself, he'll be able to give you a lot more support.
Carrie, I agree completely. Respite was the first thing that came to my mind. Not sure if you've already explored this avenue sweething, but your needs are now more important and the help is (should) be there in situations like this.
They can drag him screaming, but you can't go on the way you are.
take care
Jean
Sorry but if he refuses, they can't make him go into respite.
Better that a carer comes in three times a day for a week and sweetthing goes away for a week. Sweetthing gets the break she needs and he will see what it is like when she is not around, hopefully he will then appreciate sweetthing on her return.
Note to my daughters, put me in a home if I get to be demanding with my COPD
Sweetthing I think it's time to empower yourself and put your self and health before your 'controlling' husband. He is making you ill with stress.He is behaving like he is the master and you are his slave or 'victim'. Don't let him, it is your life and happiness at stake. After years of being worn down by him you are going to have to be very strong and put your foot down.
By now the authorities and your family will be aware of your 'plight' and should step in to help.
If not, then get on the phone and get that help,I know you're not well but do it for you,put yourself first for once and get as many breaks from this man who thinks he can run you into the ground,because he has got away with treating you poorly all this time.
You deserve so much better Sweetthing,you could get your health back and enjoy life,you can be happy,it is your birthright to be,The greatest power on earth is love and that begins with you! use that power and be good to yourself!
PLEASE try to take some of the advise given above and get some help SHOUT at the doctors if you need to, but you need help. I hope you did sleep in your own bed, you need sleep. Try to look after yourself first and foremost. He just doesn't deserve you to be running after him - what a fool not taking his antibiotics. Stay strong. With much love TAD xx
The is really sad and I do have to say its abuse from one living person to another. I really think you should ask a member of the family to come for even one night to let you go away and sleep. It's sleep deprivation that leads us to desperation. Please look after yourself. First yourself because without YOU nothing functions. Audrey Jersey
Please ask for help today from your gp's surgery or ring the BLF helpline...they will best know what to do.
It can't go on like this...we are all rooting for you.
Thank you all so much for your lovely comments.
I have been up all night with him, he was really ill and I thought he was going to die but he refused the ambulance so I said well, that is now up to you, I can't do anymore. I put a chemical toilet in the bedroom and got all his oxygen cylinders as the concentrator was not doing enough, his sats at rest are 86 but when he stands they are 69/70 so I have to supplement the 2 litres per minute oxygen with the oxygen cylinders to bring it up to 4 litres per minute until his sats go back up to 86 (I was given the okay to do this by the respiratory team until he was re-checked.) The respiratory team were talking of doing this when he became ill and it was put on hold.
In desperation I rang the respiratory team this morning and told them I need urgent help, told them what was going on, all the figures and how much oxygen we were using and that it wouldn't last the week-end and we needed help now. I told him I was making darned sure he was taking everything he should be taking (I am standing over him with the tablets) and all we needed was someone to come out and have a look at him.
They are at the moment discussing with the hospital registrar about whether to have him re-admitted or whether they will come to our house and re-check his blood gasses and organise the correct flow of oxygen. They say that once the antibiotics kick in his breathing should improve.
He is asleep at the minute so I am having a sit down until the respiratory team ring me.
He was shouting and balling at me last night that I was not quick enough with the oxygen. So I yelled back at him and said anymore abuse from you and you can stick it, I am packing my bags, I have had enough of you and for all I care you can die right now. He said he was sorry.
I will keep you informed, but thank you again for all your kind words and advice. It is now 10 am and not one person has rung me to find out how things are, they knew how ill he was last night and how poorly I am, but it would be nice to know someone was thinking about us.
Well done sweetthing for phoning the respiratory team. On your next breathing space phone the respite care people, I left a couple of links on your previous blog (he's back home) which I hope you will find useful.
Beats me how he can shout and ball when he is short of breath and gasping for air / oxygen.
At least he apologised afterward when you threatened to leave.
Grand slam. What a selfish man he doesn't deserve you. Be a bit firmer with him. Leave him for a couple of hours on his own take yourself out . Have coffee with friends.
Just got a call from the respiratory team to let me know what is going on, they are going to have another talk with the hospital registrar and then decide whether to admit him or send someone out today to check his blood gasses and then they can make a decision. The hospital told them what they told us, they cannot do anymore for him in hospital than I can do at home for him as he has everything at home he would be getting in hospital, so I told the respiratory team, yes, a poorly 70 year old woman being up all night again taking a poorly man to the toilet, then having to clean the mess up when he does not get there in time. If they are not careful they will be having another patient admitted, me.
They said they will get back to me when something is sorted out, they better hurry up as I will be having to order another 6 oxygen cylinders, the second lot this week as I am now down to 4 cylinders and they won't last long, and the 2 LPH isn't doing any good.
My sons have told me it's time to get a carer in. So I am going to look into it and find out what it will cost us, it would just be for one day a week as that is all I want, just to get out one day a week. It is a terrible state when you have to pay for someone to give you a day off, all our friends have dwindled away, my daughters-in-law can't do it, one works, and the other has two small children and lives quite a way away. My sons both work away during the week, so as I have said before, once he is back on his feet and I am feeling well again my son will come on a Monday and work from our home and sit with him whilst I go out for a few hours.
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A day won't do it for you ... what will make him stop treating you badly on the other days, unless you take control. There is a reason you don't stand up for yourself anything like enough - what is it ? There is a reason you don't move out, what is it ?
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I don't like confrontations, I like a quiet life, always have done, so I was put on from the very beginning of our married life, I was told I was 'only' a part time worker, so I did everything, my husband never, ever cooked a meal, did the washing, ironing, vacuuming etc. etc. I brought up two children, and if I had to work week-ends my two sons had soup for their meals until I came home, my sons even joke about it now. My husband asked me how would he know when the soup was ready, I said it would bloody bubble.
The reason I don't move out is I would feel guilty and would not enjoy my freedom, also I cannot do with the upset of solicitors, finding somewhere to live etc. etc. so I am biding my time and hoping that in the near future I can get a day off from it all. The last time I was in town on my own, was last August when he was in hospital and my sons visited him to give me a day off, apart from that one day I have not been in town since January 2012.
I am still waiting for a call from the respiratory team to tell me what is happening, my husband said that if he goes into hospital he needs me to go with him as he wants me to be there when they leave him in the cubicle as he might want to use the urinal. I have told him I am not a nurse, and I will not under any circumstances do their job for them.
Thank you very much for caring.
in reply to
Sounds like you are starting to make your stand and risking confrontation .... then seems to me the bully is not raecting badly to you standing up for yourself ... even saying sorry....hmm
wonder if you can get counselling through your doctor. I did years ago and it really helped me unravel stuff and make new starts in lots of ways....then I went from strength to strength (except for COPD that is ! Carry on standing up for yourself - it doesn't need to be only when you are at the end of that tether - it can be early as you like in response to what you do not like and calm too. You never know, you may begin a whole new way of being with your partner as he unlearns bullying and gets with your new rules. you will both be much happier. And if even that does not make positive change, then with counselling and other help that is out there for you, you can decide from a stronger position what you choose to do with the rest of your life. I wish you all the very best and feel a change already is happening within you. Take care. xxx
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He was doing his own thing today, upping his oxygen when he didn't need to. His nose was dripping and he wanted me to wipe it. He wanted me to give him a drink from the bottle.
I told him enough was enough, if he can't wipe his own nose, have a drink and is being dangerous with the oxygen then it is time for him to go into a care home.
He said if he did, the house was in his name and I would also lose his pension. I told him I have been married to him for 50 years so half the house is mine and I have also got money in my own bank accounts because I started transferring them last year when they matured because I didn't pay tax. Even though I don't pay tax the interest on the money does not take me over the thresh-hold, so I am covered, I will also have my own state pension, so all in all I could get a small property somewhere.
I would feel guilty about leaving him in the state he was in but if he keeps saying he can't blow his own nose, or take a drink by himself then the time has come for him to have more help than I can give him. If he hadn't been such a bossy, domineering person, then I would have gone to the ends of the earth to help him but the way I feel about it all is I haven't the patience anymore.
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You are really planning your better life and you have worked out and know you really can do it financially and emotionally. Am so impressed by your strength now. Yes I think a care or nursing home may well be the answer ...can you speak to your doctor about this and social services too...emphasising you no longer can manage his needs as he needs 24 hr nursing and physical help...and spell out the effects on your mental and physical wellbeing from looking after him. You know that things may well be at this stage even if he was a good patient partner. You are at risk and speaking to doc etc should help them realise that. All best wishes. Looking forward to more good news from you. Xx
Oh my goodness you sooooo desparately need some help dear lady.
Surely you qualify for respite care too and could get some time away?
Heck, why are you having all these 02 cylinders to hump around - can't the 02 provider supply something a little more acceptable? After I was discharged from hospital some years ago after having a coronary stent inserted, I arrived home and the 02 driver arrived with 8 huge tanks. Well, I just took one look at them and said "how am I going to move them and where the heck am I going to put them" - they were back in a few hours with a liquid 02 system. I believe you can get 02 "ports" plumbed into various rooms like the lounge, bedroom wherever (the loo??). Perhaps you may need the Social Services to take on your cause and your GP could arrange this for you. They would assess how much care he needs and what type. Your sons are so right about this so don't feel guilty.
In the meantime Sweetthing PLEASE try and get some time to yourself.
Well the respiratory nurse came today to check his oxygen levels and said she had spoken to a specialist who said that 85/92% at rest is acceptable and it is the infection that is causing the big drop in his sats when he stands up. I told her all about all the tanks I have to move about even though we have a plumbed in concentrator but it only goes to 2 LPM so when he stands up I have to supplement it with the oxygen tanks to bring it up to 4 LPM to enable his sats to get back to normal more quickly. She has now organised a bigger machine that goes up to 4 LPM so we can use 2 LPM when he is at rest and up it to 4 LPM on exertion. We will only need the oxygen cylinders when we go to hospital check-ups etc. when he is walking to the car or taxi. That will save me
He said to me tonight that if he goes into hospital I will have to go with him and stay with him because there is not enough staff on to answer him quick enough when he calls.
So I told him in no uncertain terms that I am his skivvy at home I refuse to be his skivvy in hospital.
I know I can get bad tempered when I am ill, but I hope and pray I never reach the stage that you have to live with.
Reading your blogs is a real eye opener as to just how demanding and self important sick people can become,
It has made me realise how easy it would be to start down that road of expecting everything to be done for me. I have nearly asked for things several times then thought of you and knew if I got off my bottom I could do myself.
He might be driving you insane, but my wife hopefully will gain from what you have shared with us, good luck and I hope you get some real help soon
I am so glad something is being done about your situation at last, and you know you have support from all of us here.
Your husband seems to be a very frightened man,and emotionally and physically reliant on you, but at the same time you have your needs and health to think of. It is much too big a job for you alone.
You need all the help you can get, don't worry about making a fuss.
it seems to me that your husband undoubtably compromised by his illness is realy playing the role of being sick it has become his identity and any chance of improvement in his condition will threaten that , which is why he does not take medication properly etc. you need to take care of yourself and make sure you are getting all the help and support you are surely entitled to do not be frightened of making a ""fuss the more you do the more notice will be taken of you try to make time for yourself get some headphones find some music you like and relax easier said than done I know remember there are a lot of thinking of you
I have just had a real old barney with him. He is banging on the floor with his walking stick all the time wanting something. I went upstairs and told him i have had enough, he said it wouldn't be long before he was dead as he has never been so ill.
I have told him to get a grip, okay he has a bad illness but to stop acting as though he has terminal cancer and is going to die this week. He has a very bad chest infection that needs antibiotics, anti-inflammatory medication, nebulisers, and oxygen not to mention all his other drugs, but there is no reason why, come Sunday, he will be nearly back to his normal obnoxious self.
He is definitely feeling sorry for himself. I told him that I started being ill two days after him and I have a chest infection (I also have asthma) am taking antibiotics and still running backwards and forwards to the hospital, up and down the stairs not had any sleep for two whole nights because of his mamby pamby ways and if he doesn't sort himself out after this infection has run it's course then I am going to get carers in and start living my life without him. He is going to have to get off his backside and start going out on his scooter so we can go out for a meal and try and live a normal a life as possible. I said if he doesn't then we are finished as I am not living my life another minute like this. We can still share the house but he will be looked after by carers and they will be at his beck and call and I will have my life back. He can pay the carers out of his pension.
Hurrah good for you Sweetthing - bet you felt better standing up for yourself at last - keep it up and take care of yourself. All good wishes xx
Good Morning Sweetthing - I hope you have had a good nights sleep. I have read all your updates and so pleased that you have had some support. So brave of you to stand up to him after all these years. It must be a relief to know that you have a "plan" if he doesn't pull himself round. My husband has severe COPD and is very demanding when he is ill but he is not bloody rude and he can wipe his nose! Lets hope today is a better day and you can regain your life. Take good care with much love TAD xxx
Another bad night. The larger oxygen concentrator came today so I can alter the flow from 2 LPM at rest to 4 LPM when he stands up or walks.
It is downstairs so in the middle of the night he uses 2 LPM but if he has to get up like I say it has to be upped to 4 LPM so that means me running downstairs and altering the machine, going back upstairs again and when he was finished doing what he was doing I would have to go downstairs again and alter it back to 2 LPM.
I told the respiratory nurse that there was no way I was doing that as he is up 5/6 times during the night, so she said to use his oxygen cylinders on 4 LPM for when he is mobile and the machine on 2 LPM for when he is laying down. She asked if I wanted any more cylinders but as I have got eight 400 cylinders and four 300 cylinders I have enough, as when he gets better he will need them for his pulmonary classes and when we go to hospital or going out in the garden.
WELL, the machine arrived, and it is great, it will be more useful when he gets back downstairs as I can alter it from 2 LPM to 4 LPM depending on what he is doing, but will still need the cylinders for the night-time.
When the engineer had finished he said he had some stuff to take away. So I said I didn't have anything to take away I was wanting replacement cylinders from them, he said on his notes he had to remove four 400 cylinders and four 300 cylinders, that would leave me with only four 400 cylinders in the house.
I told them that four cylinders are not enough, he uses one cylinder at his rehab class one day and another cylinder at his rehab class another day, and then uses them at night-time as the machine is downstairs and we are not going up and downstairs to alter the flow every two hours. When he gets better what about getting out in the garden or going to the hospital to see the specialist. The engineer said that we are only supposed to call them out once a week. I told him he was not taking them and if he did take them I would be calling them out every two days, so he wrote down patients wife will not hand them back.
I am now awaiting a telephone call.
What do you do, how many cylinders do you have, and what kind of a concentrator do you have, is there a better way around this. How would my husband be able to go down in the night and change the settings himself if he lived on his own, it is bad enough for me having to do it. I suppose we could have another machine upstairs, I would like your advice please.
So sorry that you're now having a hard time with the 02 suppliers. Best to get onto one of the managers I think as the driver is just trying to do what he is asked.
Great that you now have a concentrator that goes to 4lpm BUT given the circumstances, could they not connect two switches and a hose for the concentrator i.e. one in the lounge and one in the bedroom so there is no moving the concentrator (or tanks) as such, just flicking a switch in each room as the 02 is required. I sure that I've read this done somewhere. This would NOT solve the problem if the concentrator was set on 2 lpm downstairs and in the middle of the night it was suddenly required on 4 lpm as you would still need to go and turn the machine up or turn it up BEFORE bedtime.
It would be really helpful if they would give you two machines then hubby could do his own thing!!! What would happen if you weren't there???
I actually have a Helios Marathon supplied by my 02 supplier but I'm not sure just how much 02 is required by you. Here are the details of the machine.
I get a new delivery of a large tank which I keep in a shed outside and the Marathon hand unit is filled as and when I require it. Husband fills the Marathon for me and it can be a little tricky at times. It is very lightweight compared to tanks and is also VERY difficult to get hold of from the suppliers!!!
Wishing you all the very best
Hugs xxxxx
Thank you for your reply. We could have two hoses one up and one down but the problem again is as you say having to go downstairs to alter it from setting to setting. It would be a lot better if the flow change knob was at the end of each piece of tubing, then you could alter it yourself, i.e. such as the numbers on an oxygen cylinder. I am hoping that once he gets over the infection then we can get back to normal but if it becomes a long term situation then i am asking for another concentrator. A friend of mines mother had three, one in the kitchen, one in the front room and one upstairs and they were all plumbed in. The engineer said we could have it upstairs if we wanted, but would need more paperwork as this new machine was to replace the smaller one in the same position in the house.
My husband, if I wasn't there, would be in a home as there is no way he can manage on his own. I just wish he wasn't so dependant on me, if he can't see me then he calls for me so I don't get a minutes peace from him. I get up in the morning, get him on the chemical toilet, alter his oxygen until he is breathing okay again, run downstairs, and let the dog into the back garden, go back upstairs, get him into bed, help him clean his teeth in a bowl and get his oxygen in the correct setting again. Go downstairs and see if the dog has done anything, pick it up and then make breakfast for us both, I have breakfast with him then he tries to sleep and I can come down and do my housework and wash up.
The problem is, like I have said before, he thinks he is dying, he has got an infection, only had it since last Friday, one week, and is getting upset because he thinks it is the end of his life. I have to force him to take his tablets and use the nebuliser, the nurse has told him the quicker he gets the gunk up the quicker he will get better. But all we get is 'I can't'.
Anyhow, thank you for your kind comments and useful information.
I have just read your yesterdays blog(the one above) and in some ways your situation reminds me very much of both my parents and mine in the past.
My father was a very controlling person but very attached to my mother, and when he had a stroke needed the reassurance of my mothers presence all the time, as he was so frightened of dying. But he didn't have the physical needs that your husband has.
I remember when my chest condition was at its worst, feeling so extremely anxious that I couldn't think of anything else except for the struggle to breathe, and the need to be with familiar people.
Do you belong to a church or any other similar support network that could come and speak to him and offer reassurance. I hope your Matron can help tomorrow.
Remember you have needs as well, maybe try and leave him in his room for a short time saying you need a rest but tell him that you are near and will be back in say half an hour to see him.
Then later you can leave it an hour at a time, gradually wean him off the dependancy.
Thank you so much, you have hit the nail directly on the head, he does physically want me near him at all times, I had some bedding plants to put in my tubs today and with feeling a bit better I wanted some fresh air and also it would give me an excuse to get away from him. He said I had to open the front bedroom window and only work within ear sound (if that is the way to say it) in case he calls for me.
We have had the mental health person come to the house as it was horrendous, he was calling for me all the time, I was even waking up in the night, when he was in hospital, as I had heard him call my name which was impossible because he wasn't there. The young man told him that it was damaging my health and it would help him if he was put on anti-depressants, but he refused. I used to have lots of friends, always going out, having meals, going for massages etc. then he retired and everything came to a stop as even when he was not ill he could not abide me not being there so I lost all of my friends, he just hates and hated me having a life away from him, now it is unbearable.
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update on hospital visit
