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what can I do for the best in this situation? - Carers UK Forum

what can I do for the best in this situation?

Tell us a bit about yourself here.
Hello, I don't know if any of this is really appropriate but here goes, I don't know if I'd be called a carer or not, I feel a bit of a fraud using the term compared to a lot of people here who I can see have far more challenging problems and constant daily struggle of various kinds.

My partner is in his late thirties (I'm ten years older) and he has back problems, problems with discs, an anular tear and constant hip and leg pain for which no one seems to have any real diagnosis or explanation apart from possible arthritis. He has had two caudal epidural injections in the last year which he said had no effect, he refuses to do any exercise or go to physio, says it does not work, will not consider anything such as acupuncture, will not consider taking supplements such as glucosamine. He basically says 'nothing works'. He hasn't been able to work for about 4 years, what worries me is his lifestyle, he lives constantly in bed, and I mean constantly, he can get up and about if there is some incentive such as something he really wants but I truly believe he just does not want to in the main, of course he has pain I do realise that, he has been taking oramorph 'as and when' for 18 months and also takes the morphine in tablet form, forgive me I am not sure of the exact name of the medication. I feel he has bullied the GP into letting him stay on the oramorph, at one point they wanted him to come off it (he always deals with them by phone saying he can't get to the surgery) and he lost his temper so badly on the phone that there has never been any suggestion of him coming off it since.

When he wakes up there is no idea whatsoever of getting up that day, he tells people he is 'bedridden', he even said it to his doctor over the telephone who in no uncertain terms told him he was not considered to be bedridden which resulted in him hanging up the phone. He can get up and about, comes downstairs to make cups of tea and lunch/dinner as he will not eat what I eat and will not let me cook for him, he usually eats late at night after I have gone to bed. He lies in bed all day every day, sleeping on and off, he usually sleeps the entire afternoon, this has been going on for nearly three years now. He suffers from high blood pressure and smokes constantly, is overweight, constantly has an upset stomach, stomach pains, and very often just says he feels so ill he has to sleep all day, today is one of those days he says he feels ill, shivery, cold and weak.

Am I really on the wrong track in thinking his lifestyle is contributing to the way he is feeling? I know he has back problems but everything I have read and understand stresses the need to keep mobile as much as possible and to strengthen muscles as much as possible to compensate for the problems. I know if I spent all my time in bed in a stuffy smokey room and got no exercise or fresh air I'd end up feeling really ill! I'm so worried that he smokes so much and gets absolutely no exercise. I've told him today if he feels so ill on a regular basis he needs to speak to his GP, he already knows how I feel about him living constantly in bed but I am not allowed really to mention it, he sees it as me having a go at him, his parents also worry but I think frankly are afraid to speak up as he has a tendancy to lose his temper easily and we are all on eggshells all the time.

His sleeping patterns are all over the place so much so I have had to move into the spare bedroom because I get up early for work and he does not go to sleep until 2 or 3 am on a regular basis. Even when I had no other bed to go to (have since acquired one) he was unwilling even to try to get to sleep earlier so I could get some sleep and refused to switch the light off or turn the tv down until he was ready and refused to go downstairs to watch TV. Needless to say we have no real life as a couple, we do not go out or have friends, I spend all my time on my own basically, he has not spent any time downstairs for almost three years apart from when his family come to visit during which time he lives normally, normal sleeping pattern, up and about in the day (alright I know it hurts him but he does it!) It causes problems that I will not go and sit with him in a smokey stale bedroom but quite apart from the actual environment putting me off he's so absolutely miserable and morose, I don't feel welcome, cleaning the room is a problem, I'm more than willing to do it but it's getting him to let me, he won't even sit downstairs for a bit while I tackle it.

He had an appointment recently at the pain clinic of the local hospital, he'd been waiting a long time for this appointment, on the morning of the appointment he called to cancel it and went to buy a new TV instead, I'm sorry but I was furious. Now he has to wait for another appointment.
I hope I don't come across as selfish or judgmental but I do find it hard living like this, but the thing that bothers me the most is the way he lives, it cannot be doing him any good, he looks so pale and frankly very unhealthy. There is absolutely no reasoning with him at all and I just don't know what to do. When I told him today he needs to speak to his GP I was just told to get out and leave him alone, only not as politely as that. I don't think he realises how other people with far far more serious health issues than him strive and struggle to live as normal a life as possible and is the sort of person who's argument would be 'well that's them, that's not me', I hate to see him like this, it appears he has just given up although part of me believes he's happy living like this.

I really don't know how to tackle this, even if I should or just leave him to get on with it, even if I can go on with it at all, I don't have any family or anyone else I can talk to and just really need to speak to someone. I think I can see there are a lot of separate issues going on here, back problem, temper, lack of motivation, separate but connected. I don't want to be the person who enables this unhealthy lifestyle, I do try to encourage activity but feel I'm wasting my breath,

Has anyone else been in a similar situation?
Thanks so much for getting this far!
Hi Very Confused and welcome to the forum.

For starters I think you need to get to see your GP for some support for yourself.

What I am about to say may sound harsh and forgive me if I upset you - but I think your partner has you just where he wants you; you are his nursemaid, companion, cook and cleaner and whilst you continue to allow him to get away with his behaviour and treatment of you he will continue to do so. Whilst I fully understand that he is in pain, from what you say it does seem to be selective as he can do things for himself when he wants to.

And just what kind of GP does he have that they let him stay on morphine indefinitely without monitoring his progress ? It is a highly addictive drug and should only be used sparingly under constant medical supervision.

Perhaps it's time for you to re-consider your options - you need to step back from this unhealthy situation and decide whether you want to go on like this. Go see your GP, maybe get some counselling to help you decide what YOU want to do. Get a Carer's Assessment for YOURSELF to highlight where YOU need help managing the situation.

Forgive me if I speak out of turn but it seems to me that you are the one needing help.

Hi my dear a big warm welcome and you will find not only good advice on hear but some fab freinds
I an sorry to hear of your situation but reading it I think it's more your partner who is being selfish and controlling
(For instance he knows you must work and yet he was unwilling even to try to get to sleep earlier so you could get some sleep and refused to switch the light off or turn the TV down until he was ready). selfish?And who paid for the new TV him? I don't think so and why should you clean his smelly room |?
There are those who would love to get out etc but cant because of disability/ illness and when you read some who deliberately abuse there bodies and through their lifestyle making them selves ill and causing stress and pain for others they are more than utter selfish
you cant go on like this you must do something and awake up call to threaten him to leave might help and if he says go my dear you must stick to it there are places refuge for women for instance you can go too B/B etc even if its temp both for your sake and his
Its pulling you down you cant go on like this keep me informed coffeex

Thankyou both so much for taking the time to reply and the welcome, and no you haven't spoken out of turn I agree with everything you both said, coming from people outside the situation it only makes things clearer, I think I do know deep down that this isn't an acceptable or healthy situation, I have asked my partner to leave on several occasions which he refuses to do and tells me to go instead, the tenancy is in my name, I guess that is another issue. I have tried to get some help and counselling via a women's organisation but the counselling was not free so perhaps it is time to approach my GP.
I do agree about the doctor and the prescribing of the oramorph, I've read it is not for long term use, it has been suggested I speak to the GP about it, I know they can't discuss a patient but they must surely be able to listen to a family member's concerns.
Things have been like this for so long that I realise deep down that he will not change and that no amount of any kind of encouragement , positive or negative, is going to change things, he's content and settled in his lifestyle I can see that. He is selfish yes I think so, but when you're being told constantly that you are the selfish one for being 'so horrible' to someone 'so ill' you do start to doubt yourself. I just wish I could have even five minutes of a frank conversation with him about how things are without him losing his temper.
Thankyou again, xx
Hi and welcome to a place where 'you will feel welcomed'.

I am in agreement totally with coffee and susieq you now need to take care of yourself. You have looked after your partner for long enough now with no support it's time for you to be strong for yourself and 'get out' before you lose your own sanity.

Forgive me if my wording was somewhat harsh it was never meant to be but this situation reminds me of my previous partner, almost another lifetime ago now but a relationship that took me 7yrs to finally break away from. After trying everything I thought I possible could it still wasn't good enough! In the end my sanity became more to me than he did.

It happened to be the best formula for both of us as it goes but that's not to say it's the same with everyone else. My situation was not so dissimilar to your own and before your situation becomes too repugnant it might be that this is what your partner needs as his wake up call. Or it may not! Whichever, you have to set yourself 'free'.

What saddens me is that you are both still young and you both should be living.
Dear Confused

I'm going to be very blunt here, but only because I was once in a very similar situation to yours, so I absolutely understand your set-up -

do the words Control Freak and Doormat ring any bells?

This man is treating you like a housekeeper not a partner.
He is downright unpleasant to people deliberately to ensure they keep their distance - that way they can't get close enough to see he's probably not as compromised as he makes out, similarly, cancelling a long-standing hospital appointment is the behaviour of someone with something to hide.

You say when his family is around he behaves normally, but in pain - how do you know he's in pain? Because he tells you so!

If the tenancy is in your name then you CAN get him out of your home, and your life.

It really sounds as though you are being conned and used by a manipulative man who cares very little for anyone except himself.

I stuck with a similar situation for 13 years, in the niaive (actually completely stupid) belief that I would be able to make things better eventually. Image
I came to my senses and made him leave four years ago.

I am a very happy person now Image

Please take a step back and look at your set-up with the eyes of a stranger - would you let a friend continue in a relationship like this?

Write down the pros and cons of your current life - then take action Image

Keep posting, let us know how you're doing xx
thanks everyone, nelliejo thanks, don't worry about being blunt I appreciate it, I can see he arranges things so everyone, GP included, is kept at a distance. And no I wouldn't let a friend carry on like this, I know this situation is dragging me down, I feel so completely down today. It's unbelievably difficult to bring up any serious or pertinent topic of conversation with him, I have been thinking about couselling as I do feel I need to get this all out into the open, I tried to mention the idea of counselling to him today, his mother has had it and benefitted, he shrugged it off, he calls it his mother 'speaking to someone', it's the suggestion of the neurotic female needing a little pat on the head...!! He's obsessed with me being secretive and constantly 'up to something', nothing could be further from the truth, it is so wearing. When he is on the phone to his parents and speaks openly and unashamedly about spending all his time in bed I can barely believe they don't say anything but they don't and that way it seems to underline that is only me who has a problem with it and other people think it's fine! Not that it should be up to the parents of a grown man to be checking up on him but I have an adult son from a previous relationship and I'd be horrified if he was living this life and I would say something but then thinking about it my son does not go off the deep end over things, I think they are scared to speak up.
Anyway, on a positive note I have made an appointment with my GP to at least discuss counselling, my GP (I've not seen them before) is also his GP who authorises the repeat prescriptions for the liquid morphine, I know for sure he takes too much of it, too often and not measured dosage. At least I have time to thik about how I could phrase it if I do say something as appointment is not till tuesday week.
Thanks again for listening, I feel a bit incoherent with it all sometimes but I do know I don't want to be living this life in 5 or ten years time, something has got to change.
Painkillers need to be reviewed from time to time,and a good GP should do this. Go to a pharmacy, (not your usual if they know you). ask about your partners doseage and how long a person should be taking this and how often that person should be seen by their GP.

Perhaps you could phone Social Services and ask for a Carers assessment for yourself, urgently. Suggest to your partner that things cannot go on lie this, and you are going to look at having support in to do the housework and some of the care around him , unless he is likely to get aggressive.In which case, phone the domestic abuse helpline, as this man seems to be abusing your love and support.

Very very good luck. YOu sound as though you truly are at the end of your tether.(((((hugs))))) x
Hello and welcome to the forum, I think everything has been said,
however you have come to the right place, they are lovely people
here who will help and support you Image
Hello and welcome Image