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Really struggling .. I've just come out of hospital - Carers UK Forum

Really struggling .. I've just come out of hospital

Tell us a bit about yourself here.
I am a 72 yo Carer for my husband who has dementia and other problems. His condition has noticably worsened over the last two months. I am his sole Carer and have no support. He has had and assessment and we are waiting for a new one and have been for a long time. My own health deteriorated last week and I ended up in hospital.

I have been my hubby's Carer since 2008 when he had his first stroke and then he was diagnosed with dementia in 2010. I have just coped until this year when mentally, I have felt myself gradually falling apart and physically recently too. I have had to stop going to the few groups I was part of, as his behaviours changed, and so my own social life is non existent. I feel so isolated. I have noticed that when I am depressed everyone avoids me or even tell me to "pull myself together because my husband needs me".

In October my daughter, who is a single Mum, suggested we move nearer to her so that I could see my grandchildren more often. Both my adult children say they will help but that is on their terms and very infrequent. Yet they tell me that I am always short tempered and irritable with my husband but so very rarely come round and they only sees me with Tony very very occasionally. But I am short with him. I do lose my temper sometimes and I do get upset, frightened and confused when his gentle nature switches to an aggressive demanding type of behaviour. I feel so bad when I lose my temper when his behaviour makes living so very difficult.

I saw the many benefits of moving nearer to my daughter and we found a potentially lovely home. We were due to exchange last week but it didn't happen. It was as if I had been holding on to some hope and certainty of moving in January .. and that has just gone or it feels like that. I feel devastated.

Over a period of days last week, my physical health which has been pretty borderline just collapsed and I ended up in hospital. The hospital knew I was a Carer. In considerable pain and on morphine I was trying to organise support for him, with very little success. They also saw how distressed my husband was when we managed to arrange for a friend to bring him in to see me.

They had to discharge me on the Christmas Eve, as there as there was no one to stay with him. My condition had improved a bit, just enough to go home and BE CARED FOR. I have come home so tired and feeling so low. Of course, he has no idea how to be with me just repeatedly telling or yelling at me to "sit down and relax". The capable one who looks after him, simply is exhausted. The hospital kept saying that they'd get in touch with SS but never did. But then it's Christmas and there's no one to help. And what would they do anyway?

And we do get by most of the time ... but something in me feels broken. I keep getting told recently the help is there but I have to get out and find it. But I have no inner resources left to do this .... I walked out twice but always come back because I love him and also because I feel so guilty leaving him and causing him further anxiety.

But as I sit here tonight I know, I feel so lost .. May be next week will be better .. maybe next month will be better ... but right now, I realise that have no one in the world who really listens to me. So I just keep quiet ....
Hi Hilary

No answers but just an assurance that here there are others that listen and an encouragement for you to keep posting as a result. Better than sitting quiet I think.
Hilary, this is absolutely disgraceful. Your husband MUST be admitted to emergency respite care. Ring Social Services out of hours number as soon as possible.
So many people just have no idea. People who really should know better. I've found that the only way to get help is to involve the police. My solicitor's going to start on getting chc to deliver what they've promised in the New Year but for the time being no one wants to know from the nhs and social services but the police will make sure Paul's cared for if I can't. No wonder the police are short of resources when they're having to sort out undelivered care packages.

People not caring about your health because you need to look after your husband. They need to look after your health so that you can look after him. If I was you I'd get someone to drive you back to hospital and tell them it was a failed discharge because no care package was put in place. And then get them to drive your husband in too as he hasn't got anyone to care for him either.

As for telling you to go out and find your own care. I can't think of anything less supportive they could possibly have said. A few months ago I banned the district nurses from my house because they kept harping on about how I had to keep making a noise about Paul's lack of care and treatment. No one should be told they aren't doing enough. I wish I'd made a formal complaint with hindsight. I gave up because banging my head on a brick wall just gave me a headache.
Hello Hillary
"Keeping quiet" is not an option. Sadly dementia is a disease that as it progresses needs a team of people. It cannot be done 24/7 by one person alone or, as you have proved, that person breaks. Sadly today the quiet and the meek get nothing. You will need, not just to speak up, but to shout, scream and probably cry until you get the help you and hubby need.
Given your health and the time of year I think your only option is to go back to the hospital, both of you. You are ill and refuse to leave until they gave put care into place for hubby. Not a promise of care, but actual care.

I also think you should show your post to your children. I dont think they realise the severity or the immediacy of the situation. A house move may be a longer term option, but you need help now.

Be firm, be clear, don't give up

I live in the New Forest, I've met so many people who have moved down here for a "happy retirement" and bitterly regretted it, because they miss all their old familiar friends and faces. It takes a VERY long time to set down roots, get to know the local surgery, GP, etc.
I think it may well be a blessing in disguise that your move has fallen through. You already have much too much to deal with, so please forget about moving for the time being. It' one of the most stressful things you can do.
As one of the people who moved down here although in our case for Paul's job not retirement I'm tempted to agree with BB. Although if I could find somewhere suitable to live in London I'd be off like a shot. The reality of moving is very stressful. Everything's unfamiliar, away from existing friends. Having to set up all the services you currently use again. Your family have already made clear they're not going to help much so you won't have the help and support you need.