Thank you @Jaded’n’faded that was a very interesting read. What an exhausting experience you have been through!It probably won't come to the Court of Protection in the end. That's very expensive and I'm pretty sure they won't do that unless someone is being kept in a home who could genuinely manage by themselves elsewhere.
I came up against the DoLS assessor with my mum. I'd moved her to a care home near me after she had a fall that landed her in hospital for a couple of months. Before that she had been fine at home, muddling along and getting in a mess with things, but managing. After the fall she was completely compromised - cognitively she took a huge dip. But she was undiagnosed and hadn't seen a doctor for years. I knew she had dementia but it wasn't official in any way.
In the home, mum was always trying to escape. She didn't want to 'go home' particularly but did want to go to the shops down the road (there weren't any and she didn't know the area anyway) or get out on the bus, etc. She'd get really angry and try to smash her way out of the door. One time when I arrived she insisted her father (!) had been in a car accident and 'they' wouldn't let her go to the hospital to see him. In other words, she was totally unsafe. She also hadn't the foggiest idea where she'd been living for the past 12 years or where she was now, often thinking she was at work.
But as the change had been sudden, mum was still very articulate and presentable, doing a great 'hostess mode' act. So the DoLS assessor started saying, 'wouldn't you like to be in a little flat of your own rather than here...?' and similar things. I got very frustrated - 'Are you mad? She has nowhere to go and couldn't possibly cope!' etc. The assessor was actually quite patient and explained things to me from their point of view. When I pointed out mum would agree to live in the Ritz or on the moon or in a dung heap if it was suggested to her, the SW said, 'Even so, if she says she wants to go home and we think she could manage, that's how it has to be.' She explained about the 'least restrictive option' directive that they worked to and although I completely understood that, there seemed to be a distinct lack of common sense in the mix. (Which I explained to her, in no uncertain terms!) For example, I thought it was great that mum was checked on daya and night. The social worker thought that was 'an unnecessary disturbance'. At that point, things became a bit fraught. The SW said she could not appoint me as mum's RPR (Relevant Person's Representative) becuse I wanted mum to stay where she was and mum - apparently - wanted to be elsewhere. So an independent advocate was appointed. I told the SW that I would wash my hands of the whole situation unless she could see that mum needed 24/7 care. I also refused to say where mum's home was and told her if she wanted mum to live somewhere else, it would be up to her to sort that out and I would resign from being her EPA, wouldn't help in any way. Finally, I said that if she went ahead with this ridiculous plan, I would hold her personally responsible should mum come to any harm as a result and would see her in court for negligence. And I left.
OK, so I'm mean and probably not a nice person to deal with. But I was scared for mum's safety. (I wouldn't have abandoned her, of course.)
What happened was that a temporary DoLS was granted (for 6 months), pending a further scan (which was scheduled) and referral to a consultant. An advocate was appointed who visited mum a couple of times and still maintained mum could live in her own place with a care package. But the consultant saved the day really. Mum had a scan which didn't show much but he visited her at the care home and diagnosed vascular dementia. Then he talked to me at length on the phone about how mum was prior to the fall (she'd been getting dodgy for years) and added Alzheimer's to the mix. He agreed that mum was definitely in the right place and really couldn't manage by herself. I told him my fears about the DoLS SW and advocate wanting to move mum to independent living and he was amazed (She's not going to get any better!') but told me that if they tried, to refer them to him. He said that in the end it was their decision, not his, but that, 'It would be a brave social worker who went against the recommendations of a consultant.'
And so when the 6 months was up, the DoLS SW returned and I was there when she went to talk to mum. Mum, bless her, talked about rice pudding - and nothing else - for over an hour
Of course, by then mum also had her diagnosis of dementia which added a lot of weight. Fortunately, the SW then agreed that the DoLS would be granted. Apparently the advocate had already been told not to bother visiting again a few months earlier - no one told me.
The point is, the whole system is unfortunately very adversarial. I get that they want to stop people from dumping granny in a care home just because she's annoying and smells a bit. But they need to put patient safety first and foremost. It's not as if people with dementia ever get better.
So my advice is stick to your guns, be prepared to (threaten to) hand over everything to social services and refuse to help. And get consultants on board if you can. Realistically, if this did get as far as the Court of Protection, I can only imagine the judge telling the social workers, 'Are you mad? Why have you wasted everyone's time with this? Obviously this person needs to be in a care home!' So I really don't think it will come to that - it's just going through the motions.
Fight the good fight! (And good luck.)
We went to see John today and suggested he might like to view another care home. He said he was up for visiting “ take me there and sell it to me” were his words. After talking to him about going home, he truly doesn’t understand where this is so I think the key thing is that, like your mum, he wants the choice to “go out shopping” but couldn’t say what he wanted. Interestingly a care worker at the home said he only asks to go out in the evenings, hence we haven’t seen this behaviour, and it’s part of “sundowning”. All the care staff we spoke to, including 2 managers said he should be in a care home for his own safety. Let’s hope they can help the meeting go in John’s best interest of being cared for.
