At my wits end

[notanaturalmum]

I don't know what to do, there are zero solutions.
Social services aren't interested because my parents have savings.
Home instead try their best but with limited results.
My mum has severe dementia but is so stubborn, its hard to wash her, get her out of bed, change her or brush her teeth. She just fights and argues with my poor dad who is 80, has cancer and is trying her best. I live an hour a way and go home once a week (this my capacity - i work full time, have a young family).
My two other sisters try their best but live further away (neither of them have cars and they always seem to be busy - neither of them work full time)
Anyway my mum has started soiling herself or at least not lifting her dress up properly when she goes. She won't wear pants and gets angry when we try to help. This is unsustainable for everyone. We can't leave her lying in it but its so hard to get her clean
It's just going to get worse and i dont know how to fix it.
I don't think a care home would even take her and there's no guarantees she wouldn't be left in soiled bed clothes.
Also she refuses to even go outside so no idea how we could even get her in a home.
Home instead could increase their visits and other than it costing a fortune, half the time would be wasted in arguing and not achieving anything
Live in care again is a minefield. My poor dad. I don't know how to help him.
I can support in the short term but we need an actual strategy that doesnt involve drugging her and putting her in a home. Is that even legal.
I'm thinking things no daughter should but its been 7 years so far and she is physically fine but mentally- there is nothing there most days.
We've tried altering the drugs - the GP isn't concerned really. I'm just stumped.
Any ideas i haven't tried?
I'm not looking forward to going home this week, i don't think i can cope with seeing my dad in despair - he's done so well but now this is beating him.

Just to say, it was a nightmare trying to get my DM to have a shower, wash her hair or change her clothes (always grubby) while she was still at home, but once she was in the care home (a specialist dementia) somehow they managed it. She was always suitably dressed, with nice clean hair.

Someone suggested that because the staff were in uniforms, they may have appeared like nurses, who to someone like my DM, had more or authority than me or my sister trying to get her washed!

My mother was in a care home for 7 years. The first five were self funded, the last two LA funded. The local authority did a financial assessment a few months before her funds ran out, they were not interested in doing it before that.

The care home will ask how long you are able to self fund, my mother's care home wanted assurance of at least a year, for others it's longer. The OP can find out the care home's terms when she speaks to them.

This is exactly what happened with MIL except she was the one going for respite for FIL with mixed dementia. She had a complete meltdown, tried to kill someone and they said they couldn't cope with her. We said she wasn't allowed to go home to FIL for safeguarding issues. She had already had scans and had attended the memory clinic as she was displaying strange behaviour - we were waiting for the results. They sped through the diagnosis and is under DOLS because of her aggression due to strokes causing dementia. They moved her to a specialist dementia home.

I honestly do not believe this....to be the case. These are two very old people with severe health needs. It does not work that way

Okay thanks for everyone's input. It's clear there's differences depending on where you live.
Called the social worker today for a carers assessment for my dad. Last one was in 2022 so we agreed it was due.
Filled on online form for my mum but when you get to the bit about financing and you say your self funded- it just gives you links to care providers which isn't helpful
Called the community mental health team, basically was told all they do is a memory assessment, sort diagnosis and meds and that's about it. She is discharged from them apparently- but the guy was nice about it and told me to ring the GP and request a physical screen and say I'm worried about a UTI
Got a GP apt for Thursday.
Tomorrow i will call AgeUk but what I'm hearing is that carers aren't allowed to touch my mum if she says no or fights (and I get that)
Which means its down to my dad to sort - bar the one day a week I'm home.
So progress but slow.

This was my DPs six months ago. Once continence goes, it gets beyond what an elderly spouse can manage day to day.
In our case a near miss accident led my sister and I to contact SS and say my mum had to go into care immediately for her own safety, so we managed to overrule my "I don't think we're at that stage.." dad.

We had two care homes say they couldn't take my mum back after respite. It was soul destroying. Loads of others we contacted had no room or couldn't meet the needs. Adult social care came through with a recommendation (even though we were self funded). She is now in that specialist care centre for adults with learning disabilities but that has a dementia unit as part of it. I had overlooked it but had run out of other options. Now she is clean and washed and chatters to you happily on visits. Dad visits every day. Because the staff are mental health nurses and knows how to manage the needs. Some of the other residents are a bit lively but it just feels like a big family.

Also if you've had visiting carers, they often know the care homes locally that are good (or that should be avoided).

My friends mum is in a dementia care home and she soils around her environment . They do have to fund her care . She is now safe and clean and the family are relieved

It's not true that adult social care won't help if you self fund but if you are self funders then you don't really need adult social care beyond advice or if you dont have POA.

Going via adult social care means waiting for a re-assessment, getting the funding approved etc (even if you are full cost), it just delays things if you have the funds to sort it yourself and have already had a care act assessments from them. If you ring them and say you need help finding urgent respite they will help, even if it's just sending you a list of suitable placements

Think of it as the equivalent of needing a hip op - you know the hip op is needed, you have the funds to pay for it to happen straightaway in a nice private hospital so you can just crack on. Why would you instead sit on a metaphorical GP waiting list for an appointment for them to agree it was needed and make a referral, to then sit on a consultants waiting list, to then sit on a op waiting list if you didn't have to?

If you have the funds and have as a family decided its time then contact care homes you like the look of that advertise that they offer dementia residential care and ask them for an assessment. You could have her moved in somewhere nice that can properly meet her needs in a dignified way by the end of the month.

If the situation is untenable and you can self fund then it’s a case of finding a care home and putting your mother in it. As and when she gets to the stage that she falls below the financial threshold for self-funding, then the local authority will do an assessment.

Have you visited any care homes?

Agree with the posters above. More assessments right now won't help, but finding a home with a place free that's suitable for her will. Look at those near you, book to visit them, see about booking her in for a few weeks for respite, then you can breathe and consider everything longer term. Also, not to dismiss the idea that care is expensive but it's very variable in cost with a number of factors like geography at play. The figure quoted earlier was way, way above the cost of my dad's very good care home.

Forget SS.

Go and find a home who can cope with her and will take her. She has funds, they need to be used to sort this out so she gets the care she needs.

"Tomorrow i will call AgeUk but what I'm hearing is that carers aren't allowed to touch my mum if she says no or fights (and I get that)"

This is why you need to be looking at specialist dementia homes, self funded in the first instance. It is highly unlikely that the care companies used by social services specialise in dementia or even give some of their employees specialist dementia training.

Without this, they won't be trained in how to manage defiant behaviour or treat someone against their wishes. They also won't be trained in how to physical move patients' bodies to safely perform tasks like bathing, changing or toileting without getting the agreement, and at least some level of help, from the patient. Specialist dementia homes will train staff to perform tasks safely when the patient can't work with them or even go floppy to allow them to work.

@stichguru is right. The right care home will be able to manage and care for your mum despite protests. This was one of the specific questions I asked them.

It’s my understanding too, that this can be done.

You pay as normal, privately, but social services organise this. Social services of course add a premium for their time input as well, so it is slightly more expensive. But the organisation of care can be sine by social services if for any reason the adult children unable to organise, or indeed if there are no adult children.

Am I correct in thinking this?

dementia care home needed , they are used to patents like this . Can you tell her she’s only going for a while ?

Well we are two weeks on and despite research and chats my dad is still keen to keep her at home.
Today has been an eye opener.
We rang GP as she has stopped eating meals and not really drinking. He wouldn't do a home visit (not sure why) but he recommended my mum to go to A&E in an ambulance so that she could get fluids.
The people came- my mum wasn't going anywhere- it took 4 of them to get her in a chair, carry her downstairs screaming into the ambulance. Then she wouldn't sit down, kept trying to escape (even though we were trying to keep her calm)
After an hour, they decided it was too difficult and rang the GP to prescribe antibiotics for a UTI over the phone.
Mum went back in the house calmly and is now fine (although not eating or drinking much).
How are we going to get her into a care home if 4 paramedics can't even get her to stay in an ambulance. She was so scared the whole time, it was awful to see. I don't think she's capable of going anywhere, she gets so agitated.

Sorry to hear you are going through this. In my experience when services won't step in you have to sit back and let the crisis which leads to a hospital admission happen. This isn't how it should be, but it is the reality. Hopefully with antibiotics your Mum may settle a bit now. However, for as long as your Dad keeps going the whole system will assume your Mum is broadly ok. It is absolutely awful to watch. But keep pushing for carers assessments for your Dad and yourself, every time things change. And push for a care act assessmemt for your Mum. She is legally entitled to one and they will assess whether she needs additional help. If you are worried about her or your Dad raise it as a safeguarding alert.

Given what you describe it is likely your Mum will need a specialist dementia home, with nursing care where they can provide support and know how to manage her when she doesn't want to be helped. It will meam your options as a self funder are likely to be limited but start your homework researching options now, and look into respite care too. Many people on here seem to have success with convincing their loved one they are going away for a little holiday to get them in for respite, and often they end up staying.

despite research and chats my dad is still keen to keep her at home.

This is the first problem. As long as your dad says he will and can care for her at home (and you and you sisters are propping him up), ss will go along with that. It’s your dad that has to decide this situation is no longer tenable for him and for her and state this out loud.

Does your mum have capacity to make a decision about where she lives ? If so, then she gets to choose - but you and your dad also get to choose whether you support it. Withdraw care, tell ss there has been total carer breakdown, and they have to step in. They ultimately have a duty of care to her that you do not. You and your dad can walk away, rescind POA, leave them to it and you are not legally in the wrong.

If your mum has lost capacity…
You have POA - does your dad? If he doesn’t and it’s only you, then in theory you can overrule him, especially if you believe that staying at home is not in your mums best interests. Do you have control of her finances, and an understanding of her assets?

What did the care assessment recommend? Four care visits a day, to be funded by your mum and arranged by you, I’m guessing. But it’s not enough to help your dad have any quality of life.

The bottom line is that as long as you and your dad are keeping her ‘safe’ at home, ss are under no pressure. Being dirty is not the same as unsafe, though it’s obviously horrible for your dad. Unsafe is wandering, turning the gas on, having falls and accidents. People live alone in horrible, dirty conditions all the time but if they are choosing to do so, and if family are present to deal with it, ss are not obliged to intercede.

it’s a horrible situation to be in and I wish it wasn’t so. We had to coach FIL to say he couldn’t have MIL home from hospital and the fact she was now doubly incontinent was the clincher. She went straight to a nursing home. But she wasn’t violent or aggressive, and she had clearly lost all capacity by that point.

Sorry to hear there’s been no progress. But again, why think you won’t be able to get her out of the house? A good dementia care home will be able to advise on the right patient transport strategy to get her moved and to transition to a new environment. They deal with this kind of issue all the time.

My dad said an interesting thing when DM went into a care home for respite and ultimately permanently. "I wasn't ready to lose her, to be on my own". I said, well she is ill, and she needs to be where she can get proper care. "Yes, I suppose she is ill, I hadn't thought of it like that". (After four years of worsening dementia!)

It's a big emotional struggle, for the generation that often doesn't face emotions very well. A complicated thing of grief, denial, and being in too deep to see the bigger picture. But in the end, my poor dad was putting his needs ahead of mum's. She is happier in the care home now, though it breaks out hearts.

You poor things. We were in a similar position about 12, years ago with my mil. We found the best, most experienced people to help were the actual care home team who came out to assess her. They had more experience with dementia patients than any of us. We told her it would be respite care initially while we were on holiday (not true). I don’t think my mil was as far along as your mum. I won’t lie, it wasn’t easy, and she was so angry that first day that they nearly sent her back, but she did settle and had several good years with them. She put on weight, she was clean and tidy. I don’t think she’d have lasted anywhere near as long as that in her own house (she was alone and wasn’t safe).
How poorly is your dad? Would he consider respite care himself, perhaps in the same home but obviously non dementia part? It might mean he feels close to her and sees her getting well cared for?
And social services were hopeless for us. Didn’t help at all.