Page 3 | Care home sent her back

WickerShit · 2024-01-27T08:04:57+00:00

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.

Original poster

WickerShit · 30/01/2024 09:17

reflecting2023 · 30/01/2024 09:14

She needs an EMI bed

From what I understand this is what we will be looking for and she will be moved from the secure unit once she is more settled.

OP posts:

reflecting2023 · 30/01/2024 09:14

She needs an EMI bed

JackieQueen · 30/01/2024 09:09

Hope things work out well, op 💐

Original poster

WickerShit · 30/01/2024 08:47

helpfulperson · 30/01/2024 08:18

Obviously I don't know what the secure unit near you is like and my dad wasn't admitted in the end but when this was a possibility I looked into it. Our one is set round an inner courtyard so residents could go out into a garden area. There was a lovely bright glass corridor round this so residents could pace to their hearts content without any risk of them leaving the building. Visits were certainly possible and encouraged after the first couple of weeks. It was just more secure to get in and out. It really isn't that different to a standard care home but had more and higher level medical staff so Dr's were on site and could monitor medication and effect more closely.

Thank you this is reassuring to read.

OP posts:

helpfulperson · 30/01/2024 08:18

Obviously I don't know what the secure unit near you is like and my dad wasn't admitted in the end but when this was a possibility I looked into it. Our one is set round an inner courtyard so residents could go out into a garden area. There was a lovely bright glass corridor round this so residents could pace to their hearts content without any risk of them leaving the building. Visits were certainly possible and encouraged after the first couple of weeks. It was just more secure to get in and out. It really isn't that different to a standard care home but had more and higher level medical staff so Dr's were on site and could monitor medication and effect more closely.

Trumpton · 30/01/2024 08:04

It’s so hard and you paint such a lovely positive picture of “Hannah with her banner” I do hope she finds peace and acceptance. My mother improved considerably when the right balance of medication was reached.

DiamondGazette · 30/01/2024 07:47

@WickerShit your mum sounds like my kind of woman, Hannah with the banner ❤️ Keep advocating for her. She needs to be safe and cared for, and you are doing the best you can for her. Sending you strength.

bradpittsbathwater · 30/01/2024 07:38

WickerShit · 30/01/2024 05:04

I'm awake at 4.30 in the morning. I can't believe what's about to happen. Obviously over the last 6 years since her diagnosis I knew that she'd almost certainly end up in care. But this isn't how I visualised it.

The Admiral Nurse I spoke to today is lovely but when I queried the technicalities of the section order she said ‘Your Mum will be banging on the doors desperate to get out’ which was more visualisation than I needed if I’m honest.

SD FaceTimed me but we have no idea how to talk to each other there’s too much pain - neither of us can help the other one. One minute he’s talking brightly about hoping they can get her in somewhere nearby so he can visit (I don’t know if he has any awareness that he may not be able to visit her in the unit at all or certainly for a while, I’m too scared to mention that). Next minute he’s randomly telling me he had to wash her bedding because it was soiled. ‘There was water on it as well, I think she tried to clean it up. She does try to do stuff sometimes, in her own way’ then broke down and ended the call.

I was an only child. My biological father was an alcoholic who wasn’t around much, and when he was home he was arguing and fighting with Mum. We left when I was 5 and for a bit it was just us two until she met and married SD. In my head it was always still just us two though. SD called us ‘two peas in a pod’. I loved her so much and then one day she started to disappear and I was horrified. I’ve been grieving ever since but can’t say goodbye properly because from the outside she’s still here.

She was beautiful and clever and funny and opinionated and passionate about fairness and justice. She referred to herself as ‘Hannah with her Banner’ and got into trouble at work for wearing a red rose Labour badge on her lapel.

She had issues in her own childhood and before she met SD she was treated badly by the men in her life. Things weren’t great when I was very young but she loved me and protected me - she said ‘I love you’ constantly and she was so affectionate my overriding memory is being cuddled and held.

And now I can do nothing to reach her or help her and she’s in a living hell and that’s that.

You poor thing. You're doing everything in your power to help her by getting her the right care. Shes so lucky to have you! Your SD seems in denial a bit but it must be hard for him to see his soul mate like this.

Scottishshortbread11877 · 30/01/2024 05:19

@DiamondGazette I have never seen anything except from positive outcomes from the use of a low dose of PRN diazepam/lorazepam given at the right time. Obviously when given when agitation peaks is not going to work, but when administered at the appropriate time I have seen it to be very effective. Obviously it would not be given it any increased risk of falls etc

Original poster

WickerShit · 30/01/2024 05:04

I'm awake at 4.30 in the morning. I can't believe what's about to happen. Obviously over the last 6 years since her diagnosis I knew that she'd almost certainly end up in care. But this isn't how I visualised it.

The Admiral Nurse I spoke to today is lovely but when I queried the technicalities of the section order she said ‘Your Mum will be banging on the doors desperate to get out’ which was more visualisation than I needed if I’m honest.

SD FaceTimed me but we have no idea how to talk to each other there’s too much pain - neither of us can help the other one. One minute he’s talking brightly about hoping they can get her in somewhere nearby so he can visit (I don’t know if he has any awareness that he may not be able to visit her in the unit at all or certainly for a while, I’m too scared to mention that). Next minute he’s randomly telling me he had to wash her bedding because it was soiled. ‘There was water on it as well, I think she tried to clean it up. She does try to do stuff sometimes, in her own way’ then broke down and ended the call.

I was an only child. My biological father was an alcoholic who wasn’t around much, and when he was home he was arguing and fighting with Mum. We left when I was 5 and for a bit it was just us two until she met and married SD. In my head it was always still just us two though. SD called us ‘two peas in a pod’. I loved her so much and then one day she started to disappear and I was horrified. I’ve been grieving ever since but can’t say goodbye properly because from the outside she’s still here.

She was beautiful and clever and funny and opinionated and passionate about fairness and justice. She referred to herself as ‘Hannah with her Banner’ and got into trouble at work for wearing a red rose Labour badge on her lapel.

She had issues in her own childhood and before she met SD she was treated badly by the men in her life. Things weren’t great when I was very young but she loved me and protected me - she said ‘I love you’ constantly and she was so affectionate my overriding memory is being cuddled and held.

And now I can do nothing to reach her or help her and she’s in a living hell and that’s that.

OP posts:

DahliaMacNamara · 29/01/2024 23:04

When MIL was admitted to a similar unit, we were advised to leave it a week or two before visiting, which we felt bad about, partly because it was such a relief to know there'd be a break from the non-stop crises that go with having a seriously disturbed dementia patient in the family.
I hope tomorrow goes well for you all. Just hold on to the fact that this is the best way of getting her the long term care she needs,

HappyHamsters · 29/01/2024 20:20

Hopefully she will get the help she needs and feels more settled, she will be safe.

Original poster

WickerShit · 29/01/2024 20:16

Thank you.

It's been a long few days with a lot of phone calls / meetings ... at the moment it looks like she's going to be sectioned tomorrow and admitted into a secure elderly mental health unit at a local hospital. I'm not sure SD really understands he's still talking about parking and gardens.

Maybe eventually.

Not sure we'll even be able to visit in the short term until she's (hopefully) more stable.

OP posts:

PragmaticWench · 29/01/2024 15:59

Hoping you're okay @WickerShit ?

WhatShallIdo11 · 27/01/2024 23:01

i know this is very distressing OP - had a similar problem with my brother - one it reached crisis point, he was assessed in hospital - his local hospital said he was fine to go home -lived alone - he wasn’t so had him assessed at my local hospital and he was admitted the same day to a secure hospital. 7 months later he was discharged into a care home near me - took a little while to find somewhere to take him but, 18 months on, he is settled, calm and as happy as can be in this horrible situation - it’s grim but you have to plough on with getting the right care - I’ve no idea how the staff cope but they do - I know I couldn’t!

TheShellBeach · 27/01/2024 22:44

OP I really hope you're feeling better and more confident about the sort of care establishment your mother will go to.

You've absolutely done your best but honestly, there is nothing more you can do in terms of home care. I'm sure you realise that. There are many on these boards who will help you through as you navigate the next stage.

hellsBells246 · 27/01/2024 22:32

I might be getting the terminology wrong here but she needs a dementia nursing home or possibly admittance to a secure mental health unit. The thing is I know neither of those places will be all 'sunny lounge areas and wandering round the garden' and more 'asylum locked rooms sedation and restraints' which feels like a much huger leap than the one we were making to the care home environment. And tbh not one I think my SF will willingly agree to

This is wrong, @WickerShiT. My MIL had dementia and H signed a Deprivation of Liberty form for her. Her care home was lovely: residents could go freely from their room to multiple lounges and TV rooms, out on the balcony, down to the garden with help... There were classes and activities every day.

Go and see some care homes, see what you think of them.

TheShellBeach · 27/01/2024 22:02

Oh and the person who suggested she live with me for 3 months and I should 'adjust my lifestyle' - thanks for that, made me chuckle. I assume it was a joke.

Oh I'm sure it wasn't a joke.
Some people think that dementia is just a case of mild and gently amusing memory loss.

They don't understand the aggression, the refusal to wash or change their dirty clothes, the staying awake half the night, keeping everyone else awake, or the wandering and incoherent screaming.

I'm sorry someone suggested that, OP. You're at the end of your tether, that's quite clear, and you've been wrestling with this problem for years.

Tracker1234 · 27/01/2024 19:57

If you are not self funding can you pick a care home of your choice? There seems to be a number of people indicating that you can refuse certain ones if you don’t feel it’s right but what stops anyone just dismissing everything that is suggested until they get the one they really like?

OnGoldenPond · 27/01/2024 19:48

WickerShit · 27/01/2024 10:43

@MereDintofPandiculation

Thank you. To clarify previous to this placement they had suggested somewhere else. My SS visited it and says it was horrible, dark, smelt of urine, several flights up - generally didn't feel great. In SS words 'I'm not sending her there'. So we refused that one. So I think from our perspective we were scared that if we left it with them she'd be put in somewhere horrendous.

They can only suggest places, you can't be forced to accept any of them. When DF needed a placement, we saw several places similar to what you describe and we turned them down flat. Adult services kept looking until they eventually found the lovely place he ended up in.

OnGoldenPond · 27/01/2024 19:35

WickerShit · 27/01/2024 08:12

She's had multiple assessments. Nothing since her discharge on Thursday. Yes it was a dementia home but they are saying they are not the right level for her needs. I might be getting the terminology wrong here but she needs a dementia nursing home or possibly admittance to a secure mental health unit. The thing is I know neither of those places will be all 'sunny lounge areas and wandering round the garden' and more 'asylum locked rooms sedation and restraints' which feels like a much huger leap than the one we were making to the care home environment. And tbh not one I think my SF will willingly agree to.

My DF was in a dementia nursing home in his last days, in his case mainly due to his high physical needs as he had advanced Parkinson's along with associated dementia - no violence though. However, there were other patients in the unit who did have pretty significant behaviour challenges. These were dealt with by them being allocated 24 hour 1:1, and in particular bad cases, 2:1 care.

No locked doors or restraints, just high levels of close supervision where needed. Plus lovely calm sunlit sitting rooms and a range of engaging activities. DF always had someone sitting chatting to him every time I visited, he was very calm and content.

Sounds like your DM was not properly assessed before and the care home was entirely inadequate. I would push for another assessment and stress how bad the behaviour problems are. Does the POA cover health and welfare? If so adult services are legally obliged to engage with you no matter what your stepfather is telling them.

WanderleyWagon · 27/01/2024 18:01

If you have Power of Attorney, registered/activated/whatever the terminology is in the UK, then presumably your SF doesn't get to overrride the decision you make for her care?
I'm sorry you're going through this.

Bargello · 27/01/2024 17:20

I am glad you are making progress, @WickerShit . It really is a very difficult situation when you are trying to do your best for your mum and being blocked both by the "system" and by your stepdad who is clearly in denial about how bad things are.

Also laughing wryly at the poster who suggests a "lifestyle change" to accommodate someone in the middle/advanced stages of dementia in your home. Tell me you've never dealt with a parent who has dementia without saying you've never dealt with a parent who has dementia.

Once your mum is safe I think the fallout will be from your stepdad who is going to feel so guilty and that he's failed. Of course he hasn't but that's exactly how my mum felt when my dad was in hospital and it was clear he wasn't going to be able to get home. It's a lot to deal with.

Original poster

WickerShit · 27/01/2024 17:08

Thank you to everyone for your help and knowledgeable advice and links etc. we have kept the pressure on today and been in touch with the crisis team and fingers crossed there is a place in a Dementia Assessment Unit for her where she can be admitted, properly cared for and then a suitable place can be found for her. I am feeling much less desperate than I was this morning. We have started the process if applying for funding etc. looking to Monday now and keeping the momentum going to get her placed asap.

This has been so useful and I'm pleasantly surprised that I haven't received much negativity - other than people telling me to be firmer which is fair enough.

Oh and the person who suggested she live with me for 3 months and I should 'adjust my lifestyle' - thanks for that, made me chuckle. I assume it was a joke. Anyway to everyone else thanks again.

OP posts:

HappyHamsters · 27/01/2024 13:50

I used to print out the chc checklist which I would fill in for a rough idea of what the needs are, it doesn't mean you will always qualify as its for complex needs only but seeing the form is useful. Was she transferred to the supported living from home or hospital, these homes are not equipped for challenging behaviour.