My husband is now bed-bound (cannot load bear at all), doubly incontinent, can only effectively move his left arm/hand (and it’s not precise!). We have carers 4 x daily, and someone medical at least twice a week (GP, district nurse, continence nurse, paramedics…). The other 22 hours a day it’s me - and I’ve got 2 little people as well. He can’t really roll any more, or help with lifting his back from the bed (so changing him is a nightmare for me solo).
The main problem is his behaviour - daily he is rude, abusive, sexually explicit (in front of the kids), on occasion he’s been physically violent to me (I called the police). Just in the last week his highlights have been to accuse me of being pregnant because I spent 3 days with my parents (and the kids), to tell me he knows I have breast cancer (he’s still convinced, and I’m doing my best to un-convince my eldest who heard him), and last night calling 999 to report the house being on fire (he says they told him the house is now on 5 year fire watch - no, I was the embarassed person explaining that he has mental health issues, and there was no fire).
He refuses respite - and as he is deemed as having mental capacity, we don’t get a break. I spoke to his brother today, and he is firmly under the opinion that he should now be placed in nursing care, as the damage to me (and especially the children) is too great.
But am I right in thinking that if he’s classed as having mental capacity (even with the behaviour he exhibits) then he can’t be moved without his consent (which he will never give)? The social worker has already told him he’s in danger of me and the kids just leaving - he said OK?! In reality he’s terrified of me going, but I’m way over the edge. His relationship with the kids is zero, and he just calls me pretty much 24/7 - just can’t do it any more, but can’t see a way round it either. What would happen if I said I’m not doing the caring any more (so take your £58/week back)?
Desperately hoping someone can help
I suspect that a number of us have held back from replying to your question which really needs a legal answer. We are mostly non-professional carers and whilst we could offer opinions from our own experience you really need some legal advice. Short of trying a solicitor you could try the local Citizens Advice Bureau.
Sorry but can’t help you any more than that.
Hi
Sounds like you are at the end of your tether. It is impossible for someone to tell you what to do, but you really should talk things through, as has already been stated. For a start try the MS helpline, they may be able to point you in the right direction. Your GP and Social Services should also be able to help you further. Things wont get sorted out by themselves so really it is up to you to make some difficult decisions and take some action that will help you, your childrend and your husband to make the decisions that get you all the help you need.
With best wishes.
So sorry about the heartbreaking position you are in. I am not in your position as I am the one who has ms. We have a 25 year old son who has Cerebral Palsy and severe challenging behaviour so that can be very difficult for both my husband and myself. We do not have younger children to be affected by it but if we had I think I would have to consider a residential facility. I feel for your husband but my children would have to come first. This is probably no help to you at all and is only my opinion but I feel so much for you that I couldn’t ignore your post.
Mary
Hi Anonymous,
We’ve spotted your post and are concerned to hear you are experiencing such a difficult situation. Our helpline (0808 800 8000) has already been mentioned above if you would like to speak to someone for emotional support while things are being sorted out. Here are a few additional sources of advice and information that you might also want to try.
Disability Law Service
This charity offers free legal advice to disabled people and their families and carers. Their helpline number is 020 7791 9800 and on their website it says they can give advice relating to mental capacity (comes under Community Care advice).
Other free and confidential helplines just for carers are provided by:
- Carers UK adviceline 0808 808 7777
- Carers Direct (NHS) 0808 802 0202
It could be worth getting in touch with your local carers centre, because they often run drop-in sessions with support workers, a helpline or an advocacy service, or could signpost you to other services that could help. Find your nearest carers centre on the Carers Trust website.
Carers UK have a leaflet called ‘What every carer needs to know: A guide to mental capacity’ which you can download from this webpage
http://www.carersuk.org/professionals/order-publications/item/2049-what-every-carer-needs-to-know-a-guide-to-mental-capacity-uk9026
We really hope this information is useful, and that you find the support you need to resolve this situation in the best way for you and your family.
Very best wishes
The MS Society team