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New to forum and need advice please - Carers UK Forum

New to forum and need advice please

Tell us a bit about yourself here.
I'm currently a full time carer for my husband who has Huntington's disease but no longer want to care for him or be with him but want the best care for him and I don't know where to turn or who to turn to,I spoke to his social worker and he looked at me like I was a crazy lady and said well what can I do...please help
I'm sorry to hear your difficult position, Jane. It's a bit outside my experience, but I am sure others will answer. If your husband has a social worker, he has presumably had a needs assessment, but I think he needs a new one and you need a carer's assessment for yourself (assuming that if you want to stop caring that is even appropriate). How about the higher echelons of adult social services, if your social worker is not being helpful? You surely are not obliged to keep looking after your husband, but I hope that advice on how he can be looked after independently of you would be at least a starting point for finding a solution. I wish you the best with it.
Hi Jane
I understand that desperate to get away feeling. I suppose it depends whether you are at the end of your tether at the moment and could really, really do with a break and then lots if help thereafter or whether you just want OUT full stop. Is the problem your husband, the disease or the combination?
There's no law that says you HAVE to care for your husband. Rightly or wrongly it is, by many, 'expected' and there are those 'better or worse' promises that mean everything to some people. Would you be judged by family? Can you cope with that? The SW wasn't exactly helpful, but of course you withdrawing your care means he has a problem on his hands, but so what, that's his job.
One option would be to write to Social Services, requesting an acknowledgement of your letter, and state that on a certain date you will be leaving the house, withdrawing your care for your husband and expect them to make arrangements for said care. Then you just go on the date you have said.
Of course you will have to have somewhere to live, have enough money to live on, take all your belongings and it would be a good idea to see a solicitor first to make sure you do everything right for you. What about the house? Any children at home?
Another option would be to divide the house in 2. Write that letter but just state you are withdrawing your support and live upstairs. Social Services would have to deal with providing care etc. Then the question is whether your husband has enough money to pay for that care or whether SS would support him. His money only.
Or he could employ a live in carer to take care of his needs, which you could oversee.
Have you considered a residential or nursing Home? I suppose the latter especially depends on his age. Is he still relatively young?
Have you got any help coming in at the moment? The Social Worker should have offered you those needs assessments and you should be offered respite care for your husband, so you can have a holiday and sitting care for him so you can get out and relax as well as personal care from care workers who visit at set times of the day.
So it comes down to two big questions. Are you leaving him or going to get extra help so you can manage?
Money - what can he afford or will he be supported and what can you afford if you make that move and leave?
I would suggest that if you decide to leave you should get some extra help in place while you plan your departure and future arrangements for both of you carefully.
Look after yourself and your own health whatever your decision.
Elaine
The question is how to find the best care. Obviously how it will be financed is a fundamental part of the question. There is a Huntington's Disease Association but presumably you know that:
http://hda.org.uk/
it may be able to advise and also has a message board for members.
Apologies if I'm telling you what you already know.
Thankyou so very much for you advice guys...we started drifting apart following the death of our 14 year old daughter nearly six years ago and I'd just plucked up the courage to leave when he was diagnosed with huntingtons disease and the guilt about leaving him was to much and i stayed...hes just recently had an assessment and still waiting on financial assessment to see if he get get eight hours of support per week and also looking at a day centre,he will be 40 this october and we have a 16 and 21 year old at home.I feel very selfish and the guilt ways heavy on my mind every day but I need to make a clean break for my own health and sanity x
Dear Jane

Yours is a situation of extreme tragedy - to have lost a daughter, and with a husband victim to a most cruel, cruel genetic disease......

It's almost impossible to find anything to say in such a situation. I suppose a bitter truth is that 'just because' your husband has Huntingdon's, doesn't mean that marriages aren't under what might be called 'normal stress'.

What is the situation with your two children - how are they coping/reacting to what is going on? How (additionally) stressed and distressed will they be when/if you leave? Will they go with you (the younger one) or stay with their dad? What would you/he prefer? Have they had counselling about Huntingdon's (was your daughter a victim, or another tragic cause?) Have you yourself had any counselling?

As I say, I don't see how nearly everyone else in the world can make any kind of comment to you, given what you and your family are facing except those here who have similar tragedies to face (which, most sadly, are, indeed, a few members)

Wishing you all the very best in a situation in which there just is no 'best'.

Kindly meant, if utterly ineffectual, regards, Jenny
Welcome to the forum. Are you having any counselling? Do you have an advocate?

Social Services are very stretched at the moment, and they seem to be developing "deaf ears", well in my area anyhow. I now struggle to care for my son with learning difficulties when he comes home from his flat to stay with me at weekends, because he's 37 and a hyperactive 6ft man, and I'm 64 with health problems. I want him to have more care at his flat, but SSD have just cut his hours by 30%! I've now complained, have counselling for support - I'm widowed so no one else to share things with, and I've asked the Princess Royal Trust for Carers to act as advocate for me at future meetings.

We are all responsible for our own happiness. If you have truly fallen out of love with him, then don't ruin the rest of your life by staying.
I once met an elderly lady who told me she was about to celebrate her Golden Wedding, so I gave congratulations. She said it was nothing to celebrate, she had been married to "That" for 50 years. A loveless marriage which should have ended long ago, so they could find happiness, but it continued because she was of an age when divorce was frowned upon. I was newly wed at the time, and told my husband that if he ever felt like that about me, to say, and we'd call it a day.
A good counsellor will help you work through your feelings and support you to plan for the future, but may not be available long term through the NHS.