Hostage in own house - farcical situation

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I don't know if this is just a rant or a request for advice!

My wife and I are carers for her 91 year old mother and have been for the last 10+ years.
She lives with us in our house (which she has no share of) and has a 'annex' we've created for her to live in.

She has early stage vascular dementia, chronic arthritis and is incontinent (both bladder and bowel). She's registered disabled because of the arthritis.

We've tried (and to a very limited extent succeeded managed) to get help with her. We have someone that comes in for 15 mins every morning to empty the commode, make the bed and clean the toilet and bath. Whilst this is helpful, given her level of incontinence we are having the clean the toilet multiple times during the day, its of limited overall help.

Anyhow, to cut a VERY long (I could go on for ever) story shorter, she recently stated that she wanted to die and to call the doctor for 'the injection'. We had to explain that this wasn't an option for humans and she then demanded all of her pills (which we had to hide) and became very upset. We tried every possible number that we had - all were less than useless as it was 19:00 on a Saturday.

Eventually, the following day, my wife got through to our social worker assigned to her (and, I thought) our care. I spoke to her for a very long time explaining the problems and saying that my wife and I were on the point of a breakdown dealing with this alone. Her mantra throughout was that respite care had been agreed for 14 days and that we could call on it at any time (as we've not had a holiday in 17 years). We already knew about this and it was not entirely appropriate to this particular issue, so we requested a meeting/reassessment of my mother-in-laws needs.

All along the mantra has been that 'don't worry, you have the 14 days respite if it gets too much'

She came today and insisted on talking to the M.I.L on her own. When she came out (after about an hour!!) she told us that she categorically would not go into a home and that she wanted to stay where she is (our house) and to eventually die here. Also, she said she had no interest in, and would not go into a home for the respite care.

When we were told this we asked what we were supposed to do. The social worker then started quoting legal rights issues for the M.I.L saying it was against her rights to try to force her to go (temporarily) into a care home whilst we had a break. My wife almost lost it at this point and said 'what about OUR rights in OUR house!!'

Apparently we're screwed. So the offer of 14 days respite care is utterly useless if she refuses to go. No other offer of help was made. Our only recourse would be to refuse care - but that opens a whole new can of worms and we would only do this if we really couldn't continue and she needed to go permanently into care (not just the respite days)

So i'm stumped! What the hell are we supposed to do? As it happens there may come a point where we refuse care as my wife is likely to need her other hip replaced at some point (already had one hip and a knee done) and I am still awaiting a diagnosis after I was found to have an infection in my spinal cord (along the lines of M.S), so you can imagine how keen we both are to get our lives back at some point as if my diagnosis comes in that its progressive, then my wife will probably end up caring for me - so it would be nice to have a few 'normal' years first!

Well, thats it for me. rant over. Still don't know where to look next or what to ask. We're trying to get extra help to do lunch so we can have a bit of life, but I don't hold out any great help. The frustration for me is that the social work team don't seem to take into account that THIS IS MY HOUSE! so I don't want carers letting themselves in randomly to care for the M.I.L. As it is we have no time for ourselves, if we lose whatever privacy we have we may as well just give up totally.
Time to take the gloves off. Write a formal complaint for the personal attention of the Director of Social Services about their failure to assess mum's needs properly, and their failure to do a Carers Assessment, post it Special Delivery so you know it arrives next day.
Have you seen mum's Needs Assessment, she should have a copy.
Elderly people become totally self focussed, just can't see how much others are doing for them.
Any Needs Assessment for a disabled person should be "informed" by a Carers Assessment, the situation of all parties should be considered before deciding on how much care someone needs.
Does she need 24/7 care now?
Write a list of everything you do for mum, and most importantly, when you do it. Copy this and give it to whoever does the Carers Assessment.
You CANNOT be forced to care. Is your own GP aware of what is going on?
Hello Grant
I'm sorry to read you are in this most unfair difficult situation.
It's now a case of NEEDS not WANTS of your MlL. There is a difference. Also your wife's and your own needs are changing. The social worker is being awkward by dictating human rights. You have them too. Of course, talking to your MIL on her own, you do not know how much prompting she had.
As BB advises, time to make a stand. I think 10years of caring for her proves you actually do care, very much. Safeguarding comes into this.
My best friend and I spent the day together yesterday, we've supported each other through all sorts of ups and downs since we were 12. Her mum is now 96, frail, but mentally OK. She's reached the stage where she doesn't really want to go to day centres any more, just sit at home watching Sky Sports, which is fine.
We have almost identical qualifications, involving an awful lot of hand writing in the process. Both of us, at 65, have such tender hands that we are now considering employing someone to do our worst housework. BUT WE ARE STILL CARERS.
My friend's mum is a qualified nurse, my friend well remembers her mum caring for her grandmother, but grandmother died in her seventies. So mum has lasted a massive 20 years longer than her grandmother. Mum found caring hugely difficult when she was just 45.
It seems to me that there is little thought by the authorities of the implications not only of the elderly living longer, but also those that care for them.
At 45 I was fit, well, really energetic, up at 7am, often working until 10pm.
In the last 20 years I've had six operations, one life saving due to illness. I've had a head on smash that nearly killed me, and although I had 2 knee replacements, long term effects are now getting worse.
At the local learning difficulties planning group I attend, we were talking about parents having the right to retire from looking after their adult disabled children, and we are thinking about planning a conference next year. Maybe we also ought to think about the right to retire at 65 from caring for elderly parents too?
[quote="bowlingbun"]My best friend and I spent the day together yesterday, we've supported each other through all sorts of ups and downs since we were 12. Her mum is now 96, frail, but mentally OK. She's reached the stage where she doesn't really want to go to day centres any more, just sit at home watching Sky Sports, which is fine.
We have almost identical qualifications, involving an awful lot of hand writing in the process. Both of us, at 65, have such tender hands that we are now considering employing someone to do our worst housework. BUT WE ARE STILL CARERS.
My friend's mum is a qualified nurse, my friend well remembers her mum caring for her grandmother, but grandmother died in her seventies. So mum has lasted a massive 20 years longer than her grandmother. Mum found caring hugely difficult when she was just 45.
It seems to me that there is little thought by the authorities of the implications not only of the elderly living longer, but also those that care for them.
At 45 I was fit, well, really energetic, up at 7am, often working until 10pm.
In the last 20 years I've had six operations, one life saving due to illness. I've had a head on smash that nearly killed me, and although I had 2 knee replacements, long term effects are now getting worse.
At the local learning difficulties planning group I attend, we were talking about parents having the right to retire from looking after their adult disabled children, and we are thinking about planning a conference next year. Maybe we also ought to think about the right to retire at 65 from caring for elderly parents too? Or at least the right to more support and more guaranteed time off.
The very elderly are unlikely to agree willingly to respite etc. and any social worker worth their salary should know this and work them round to the idea that their children MUST have regular breaks if they want to live with them.
I think it's unethical to interview someone with dementia without a relative or advocate present.

Both mum and carers are entitled to having an advocate if they are having difficulty in putting their views forward successfully, so ask the LA to arrange separate advocates for all three of your in accordance with the 2014 Care Act. My son and I have them now, I am now refusing to attend meetings without an advocate.
Thank you all for your replies.

I agree, that its time to be more forceful, but it seems that the only way to do this is to refuse care thereby precipitating a shower of .... well, you can guess!

My utter frustration is that the social service drone seems to KEEP forgetting that this is OUR house not the M.I.L's and as such we should never have things dictated to us in the way she seems to be trying to do.

Bowlingbun : i'd not though of the point that it could be deemed to be unethical to interview without one of us present. The GP came to see her a few days after the last "i want to kill myself" issue. Her opinion was that she should be in a care home and both her and the local hospital (post an MRI scan) have confirmed the diagnosis of vascular dementia. But because it's at an early stage she can 'put it on' for company and come over completely with it. Then, like today (my wife had to go into London) when I went into her room to prepare the bed when she was in the bathroom, I found (as we often go) a bag full of faeces and hankies wrapped up in her handbag! (she cant seem to understand that the Tena Pants dont need packing out with tons of hankies to make them work!!)

In the words of the social worker (and she actually said this) "all the time she is in full mental health (in her opinion) she is in full control of what happens to her". Unbelievable!

So - time to go into writing and start pushing harder.

We've decided to go away for a couple of days in Sept, but we're having to fund someone coming in to stay with her 24hrs a day whilst we're away - meaning that we end up staying somewhere cheap whilst the live in carer lives in our lovely house AND gets paid for doing so! Gahhh!!!!

Thank you all again. Sometimes its good to vent and get replies as it focuses the mind.
What is mum's financial situation? Is she claiming Attendance Allowance? Does she have over £23,000 in savings. This is the crucial watershed for getting help.
I'm wondering if she has under that figure so the SW is deliberately withholding care to keep within the SW department's budget?
Is the social worker qualified. You can easily check by googling social worker qualifications, or similar, just fill in her name and the county where she is working. Social workers have been struck off before now for not doing their job properly. You can ring their enquiry line for an informal chat - I've done this myself.
Mum has pension, attendance allowance, disability allowance and some weekly allowance for the morning care (something like £60 a week).

She has absolutely no savings or property (hence her living with us).
This could be why the social worker is being so mean with the current care she is getting, because she knows Social Services will have to foot the bill. However, as mum has no money of her own, she might be entitled to Legal Aid (I've just got it for my son). As she has dementia you might be classed, as I am, her "Litigation Friend" or similar.
So google "Legal Aid + the name of where you live".
Will do ! Thanks.