At end of tether

Luckygirl, my heart goes out to you. I can't make it better for you, oh how I wish I could. I have read on here how hard you have worked to make an easier life for you and your husband. I know it's the illness turning him into an obstinate old wotsit, but knowing doesn't help.
There are bound to be many GN's along in a mo to give you some considered advice, but I couldn't read your heartfelt plea and run.
Sending you lots of love and hugs to get through the day.

Luckygirl, It doesn't sound crap at all. I haven't been in your situation, I am glad you can sound off here. Sometimes just writing things down can help a little bit. Would your OH accept a friend sitting with him to give you a break? It sounds an awful situation for both of you to be in. Is there someone, a health professional maybe,who could gently chat to him about the need for you to be able to recharge your batteries so you can be able to look after BOTH of you? Hugs.

Hugs lucky. You are doing a brilliant job. If you didn't do what you do then DH would be in a home.

On the Carer's course yesterday, the participants were all talking about what they have lost since their partner's diagnoses. It was all about their 'seperatness' and sense of self.

We had tears and some swearing along with laughter. The added problem is that you/they are older with less energy to cope.

None of that helps you but you are not alone! Is there a Carers group that you could go to for mutual understanding if nothing else?

And feel free to swear on here if it helps.

Luckygirl my heart goes out to you. This is such a difficult situation. Your OH is being unreasonable if he won’t try to meet you part way. Do you have children who could speak to him? Have you contacted your local Carers Centre? They may be able to put you in touch with local people in a similar situation and another organisation to help with respite care.
Feeling that your life is ‘stolen’ and you are trapped is horrible. You are doing all you can and have no need to feel guilty. DH died 18 months ago after a relatively short illness and I remember my very mixed feelings about being his carer and what was to come.
I hope you feel better for sharing and that some practical help comes your way.

Don't feel guilty at all Luckygirl You are human not super woman. Of course you are going to feel resentful and trapped, is there anyone you can talk to honestly about how you are feeling? I bet if you talked to other people who care for family members they will all tell you they have the same feelings at times.
Are there any alternatives to hospice care so you can get away to your music festival, live in carer, family member. Wish I could offer practical help but do take care of yourself as well as your other half.

Oh Luckygirl you are grieving for the life you had and hoped would continue. You are doing an admirable job by the sounds of things and learning to navigate around your constraints.
I can only sympathise. I’m sure others to follow will have sound advice with knowledge these situations.
Best wishes.

I know your frustration Lucky , not that it helps , that you are not alone in your frustration doesn't really help , but it is good to vent . OH wouldn't go out in his wheelchair but we did get carers , but he asked for me all the time I was out , I am afraid I had to turn a deaf ear and the carers learned not to stress me on my return . I am sure your Husband isn't aware of how much distress he is causing . And no I don't wish he was still here , he suffered enough xxx

I really feel for you. Is there anywhere else he could go for respite care so you can get away for a few days?
Also I second the idea of having carers come in if that is possible.

Luckygirl. You are trapped by this, and the longer it goes on, the worse it will be, as the precedent will be set.
Tough love, because this isn't doing him any good either. List 3 alternative for what happens in May, and get him to choose. If he says none of them, then he has to come up with a better solution, there and then. Good luck

Is there a befriending service nearby that will give your husband some company while you have a break? What part of the country are you in ?

I know how you feel. I spent 10 years of my life in a similar situation. Relatives who say they want to be independent but meaning independent of Social Services. They don’t mind being dependent on relatives though. It would not be so bad if they would help themselves or be grateful. Instead nothing you do is ever enough. They don’t seem to recognise that you need a life of your own or that you are getting older too.

You have to either harden yourself, be a slave or feel incredibly guilty. When you actually live with the person it makes it 10 times harder. Please, for you own health, harden your heart a little.

This may sound harsh but it sounds as if he is using emotional blackmail to control you. It’s not your fault that he is in this position and it appears that he is doing very little to maximise his life and help himself. He just wants you to give up your life to sit and watch tv with him. Maybe it needs some kind of intervention/counselling to make him realise that he cannot do this to you when you are clearly doing all you can to help and support him.

"... this is not my partner now really: just an obstinate old bloke who is stopping me living a life while I am still able." I know how you feel.

I misread your last line - I thought you said, "I cannot make myself feel differently by turning into a witch." Maybe it was because my thoughts sometimes feel evil!

Morning Luckygirl, I am in the same situation and believe me I have gone through all the crap you can imagine (delete the bad word if need be editor!) . We have had major rows over his attitude to his long-term chronic illness, real screaming matches when I gave way to my frustration and guilt. The answer for me was counselling. I found a professional, registered counsellor and had a course of 6 sessions which helped me no end. The guilt, anger, frustration are still around, but I am coping better and have built a life outside home with friends that enables me to manage. In essence your dear OH needs counselling, he is probably so angry that this has happened to him that he cannot think straight, but I guess the chances of getting him to acknowledge this and do something about it are probably remote. Is it time for some tough love? Have you got someone who could talk to him? If a hospice is involved are there staff who could step in with him? My post may not help, but I do so understand

You know carers need to be looked after as much as the person they are caring for. You need some me time so that you can continue doing the brilliant job you are doing. Do you have a carer's organisation in your area as they can arrange for someone to come in and sit with your dh for a while whilst you go out. They also organise activities especially for carers to give you a break. Have you spoken to your GP about this situation rather than feeling so helpless. I think you should. There is help out there and you need and deserve it.

I have PM’d you Luckygirl
But your feelings are entirely normal

Others may have suggested it but how about a walker with built in seat? Does he need help with walking/getting about? My SiL has one and it's a help when she's going short distances.

Oh Lucky I feel for you, it must be terrible. Caring for a spouse is so difficult. You hate yourself for being stressed but you are anyway. My husband didn't lose his marbles (MND) but his condition was heartbreaking. When he passed away I was told that it was a release for him and a relief for me.
A few years later we had - dare I say it? - his bloody mother with two different types of dementia. I could have cheerfully strangled her. Is there an organisation who can provide 'sitters' to make sure he is all right just to give you a short break? They are worth their weight in gold. Chin up, lass, it won't be for ever.

I was talking to a man at the swimming pool last week who said that he is looking for some voluntary jobs in the 'sitting with and chatting to' category. Where would somebody find such information? I suggested the volunteer centre at the local hospital but wondered how one covers people in own home.

Luckygirl, I can't add anything practical to what has already been suggested but felt I had to send you a (((cyber hug))) if it will help. I think you're amazing. ????

You don't mention if you have children who could help out, speak to him about his stubbornness towards you. It's not fair that you have no life.

You poor darling. Years ago I had my grandma living with us after my parents died. Sometimes the only way I remained sane ( not her fault, I was too young , 26 married with two small children) was to reward myself,once the children were old enough for school, by driving to a garden centre with a newspaper and sitting with a coffee for half an hour of undisturbed peace and quiet.

I really felt your frustration and anger at the situation you find yourself in lucky and my heart goes out to you. Your OH is being totally unreasonable and it is clear that he is not going to change unless his dependency on you being fit and well enough to care for him, is spelt out.

That means you need some time to recharge your batteries and he risks you having total burn out if that doesn't happen. Then where would he be? In a home? In a hospice? Dependent on three short visits a day from a carer?

Is there anyone in the family or friends or even old colleagues who he would listen to? You need some allies to fight your corner I think. There has to be a change if you are to carry on and I would try to get a third party in to talk to him and plan some respite for you.

Hope something can be done. You deserve it.