Care home sent her back

[WickerShit]

Mum (78) has Alzheimer's, diagnosed 2018, being cared for at home by my 85 year old step-father. Things have been really awful for a long time.

She is very very bad now crying and distressed a lot of the time, hallucinating, not washing or changing her clothes.

We have been pushing and pushing for them to get help (carers etc) and SF wouldn't have it said Mum would not accept any help from anyone but family. There's a lot more to the history of the last few years as you can imagine.

This month things came to a head with paramedics being called/hospital visits finally people seemed to start to sit up and listen and after a very bumpy ride very emotional and stressful she was found a place in a home which we moved her into. She went in Thurs lunchtime. By 7 pm they had called us and said they couldn't cope and we'd have to take her home. She was verbally and physically aggressive and throwing drinks / food at the walls.

Back home she is now calmer than that but back to crying and moaning and wandering round unable to settle. And still in the same clothes, hadn't washed for weeks,

When they called SF yesterday afternoon and asked how things are he said 'fine' . Someone called us yesterday and said if he continues to say 'fine' the authorities will move on and no more help will be offered.

Me and my step-sister have PoA. Just wondering what the next step is. So sad as I really thought on Thursday we'd finally moved on to the next albeit upsetting phase but no back to the nightmare again.

After a lot of phone calls and stress on all sides they are now not coming today as they don’t have time. So tomorrow. Another 24 hours of waiting…

OP my DM getting sectioned was the best thing that could have happened in her difficult circumstances. She spent four months in a psychiatric unit receiving the right medication for her and also becomes institutionalised and accepting of the help where as she never did accept it at home.
Four months later I found a home that would take her. They managed her for 10 months and then she moved to a nursing home that is a better fit for her.

I forgot to say I was allowed to visit straight away and I went in the secure ambulance with her. I covertly packed everything as I waited for the ambulance.

Oh no. How frustrating for you all. You get yourself worked up about something and then the NHS fails at such an important juncture.

I'm so sorry you're going through this, OP. It is just awful to have a loved one with dementia. People who haven't been through it do not understand.

You'll start to feel better in a few days, once your mother is in the unit and getting medication and meals - and being washed when she needs it, too.

Also, you will stop flinching every time your phone rings - and you'll be able to live a more normal life, without the need to factor in your mother's needs into everything you do.

Ah @WickerShit this is - I promise - the very hardest bit, in my experience. The waiting. The guilt. The pure sadness. If I could (and if you were a huggy kinda lady) I'd give you the biggest hug.

When my dad was sectioned, I led the police officers and social workers in the house to my dad's bed, woke him up and held his hand for a few minutes then left at their suggestion. A couple of hours later, someone came down to say that he was coming out and my mum wanted to be away - so I panicked and tried to drive away quickly. I reversed into the ambulance to the ambulance men's utter disgust and to the policeman's delight. We drove to the end of the road, and saw the ambulance leave shortly after.

We gave my dad several days before I visited. The first few visits were him being very angry but he slowly lost that irateness and became more like the person I remembered.

Looking back, I know that I did the right thing and I know the dad of twenty years ago would be pleased with me. He sometimes tells me that now too. Of course sometimes he tells everyone that his daughter has stolen all his assets, so on balance, the imaginary back dated approval is possibly more reliable.

I won't presume to speak for Hannah with the banner but maybe you'd have an insight into what she'd think about all of this. My dad would say "what a mess" and shake his head in despair and amusement at some of his antics...

How are things going, @WickerShit?
Has your mum been admitted?

It’s been a very stressful few days but this morning she was sectioned and taken in an ambulance to a secure mental health unit. 😢

She went quite quietly in the end although obviously very confused and upset.

Hopefully in time they can adjust her meds and stabilise her enough to go into a ‘normal’ home and we’ll be able to visit her. SD is in pieces. Right now I feel a bit numb and relieved but also very very sad.

WickerShit I went through this 15 months ago. She’s in the right place now, I’m thinking of you.

Thank you

Have they said you can't visit her where she is? I understand not in the first couple of weeks but you should be able to visit her wherever she is.

Massive hugs OP. I hope you and your family can come to peace with it.

She will be safe now and can get the assessments she needs, if they move her to a section 3 she will get aftercare which the staff will arrange, she will be able to have visitors if the staff think it appropriate and you want to visit.

She's in the best place now, OP.

I understand how draining the last few years have been for you. I hope you and your family get peace from everything now, and that your mum settles down happily.

Thank you again for your kind thoughts and words of reassurance.

Trying to not get my hopes up too much but the doctor from her ward called and said she was anxious and tearful yesterday but not aggressive so sounds like things aren't quite as extreme as they were in the last place.

I'm most looking forward to maybe at some point in the future being able to give her a cuddle without her crying all over me or pulling away. 🤞

...... or probably they're just better at reacting to her, and know how to keep her in a reasonable frame of mind.

I mean better than the last place was. More geared up to the extremes of behaviour which are often seen in dementia patients.

How are things going @WickerShit ? Thinking of you x

Thank you. Haven't replied as I've been really low tbh.

We are getting bits of information from the hospital and on the one hand they say she is 'settling' but on the other hand they say she is anxious and distressed. I was told she'd had a bath but my sister was told it had taken 3 people to strip wash her and another tube they tried to bath her but 'it didn't go well'. When I questioned this I was told some days she is more cooperative than others.

I was invited to join the ward round meeting yesterday by Teams which seemed like a good idea but I wish I hadn't bothered. The laptop their end was one end of a room full of people. I was asked to go through everything leading up to her being admitted (again! I've gone through it multiple times now including once with one of the people sat in the room). Then the main doctor who was sat right at the other end from me talked at me for a bit but unfortunately due to the distance from the laptop, the fact that my hearing isn't always great and his very strong accent I could barely understand anything he said. I did keep asking him to slow down but after a bit it just gets awkward. Anyway I think mostly he was just saying generic stuff about 'early days' and they'd need to assess her needs over the next few weeks and they'd update us further then.

My SD has been in to visit a couple of times but on the second visit she got quite distressed when he left so the hospital asked him not to go in again for a bit.

No one else has been able to go in as yet.

Just a question now of wait and see I guess.

By the way a couple of times now when different people have talked about 'assessing her needs' then one of the options on the table still seems to be sending her home. Surely they are including this just for completeness?

After everything that has happened surely no one would consider being looked after at home by an 85-year old man with multiple health issues and limited mobility is a good idea?

They're obliged to consider the least restrictive option. That doesn't mean it will actually happen. MIL never even got a family supervised day visit home in the end, in spite of all the preparation that went into making it come about. It would have been too dangerous for everyone concerned.
It's a difficult time, this settling in period, and she probably isn't on your mind any less than before.

Oh love, ward round via Teams is pure shite, ask to go in person next week if you can make it.

They have to consider sending her home, legally. When we place in a nursing home we are depriving someone of their liberty, and a legal framework called DoLS kicks in. As part of the decision making we have to evidence that we've considered less restrictive options. As Mam has lost capacity there will be a Best Interest meeting, and all options will be considered. It's just a bit of a tick box, she clearly can't go home.

Have they ruled out infection / delirium? Have they started her on any meds, maybe some Risperidone?

Unfortunately I live 2 hours drive away so attending the ward round meeting in person wouldn't be practical.

Yes she's had all the physical tests all fine no infections. I'm not sure what meds she's on other than lorazepam which I know she's been on at home and as far as I know is being continued. They are supposed to be reviewing / amending her meds over this period to try and stabilise her.

Although I'm planning to go down again soon so maybe I can time my visit to cover a couple of days over next Monday so I could go in person next week.

Ask then to email you the ward round notes, it won't be a bother for them.

I'd start considering EMI nursing homes in the area, there might be a No Choice policy in place, depending where you are, but you can still put forward a preference.

Yeah we have four to look at but as you say not sure how much choice there will be.

I'm a bit confused so maybe you can help.

Currently I have been sent a list of four EMI homes in the city they live in. It's a big city (not saying the name here partly as I don't want to put any personal info and partly because I don't want to invite any horror stories about specific homes.)

Only four. Would it be that there are more homes who could cater for her needs but they would be more expensive? Basically what I am saying (which grates as I'm a lifelong lefty) if she is out somewhere we don't like can we buy our way into somewhere better?

If we assume (for now) she qualified for nursing care funding how much does that cover and are we able to 'add' private funds to that to be able to put her into a more expensive home?

If I start looking around myself for homes what do I need to look for, how do I describe her needs to see if they could meet them?

I'm waiting on calls from a couple of people but thought I'd ask for advice here too as you have all been so knowledgeable.