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.

Why are social services not interested because they have savings? They love people who have savings. They will have to pay, but on the basis of a financial assessment.
Your dad is entitled to a carer's assessment by SS to assess what support he needs. Speak to AgeUK and they will advise you.

Does SS and the GP say your mum has capacity? Does anyone have POA?

Your dad needs to move out (temporarily, until your DM is in care). Give SS a weeks notice and tell them from x date your DM will be home alone.

I am so sorry you’re going through this. A dementia care home could take your DM. What would happen if your DDad had to go into hospital?

Is his GP aware he’s a carer? My dad and DSM are in a similar situation but nowhere near as bad (he’s the disabled and confused one, DSM has her own health issues. Their GP service has been wonderfully supportive to both of them. You may need to be very assertive with the GP - Age Uk will help you.

Why do you think a care home wouldn’t take her?
SS should do an assessment of your Mum and Dad’s needs. Have you asked for this?

A care home probably wouldn't take her, but a dementia/nursing home would. Once she no longer has capacity (which sounds like the case), the decision, however difficult, has to be taken by someone else.

Why do you think a care home wouldn't take her and SS wouldn't be interested? She would have to self fund her care, but a care home for dementia patients should absolutely take her. In fact they like self funding patients, it's them that keeps the sector afloat! If you find a decent care home they shouldn't leave her in soiled bed clothes. I'm puzzled as to why you seem to think a care home is such an impossibility when there are care homes that purely exist and continue to run because they care for people like your mum.

The care needs assessment to assess what your mum and your dad need and the financial assessment, how it would then be paid for are two separate things and should not be being conflated by social services. Talk to their local Age UK or national Age UK helpline

It doesn't matter whether she has savings, your mum is entitled to a social care assessment and your dad is entitled to a carers assessment.

A social care assessment might indicate a course of action for which your mum will have to pay. If a care home specialising in dementia is deemed to be in her best interests then, depending on how much she has in savings, she may have to pay. The value of the house can't be taken into account whilst your dad is living in it.

Age UK have a helpful guide as to what to look for when looking for a care or nursing home. Plus you can look at CQC reports, although they don't necessarily give a full picture.

Check via your GP if your mums area has an Admiral Nurse. These are specialist dementia nurses who support people and their families in the community. They are really helpful

Thanks for the replies so far.
I have POA.
Assessments have been done SS, we were advised to get care privately because we could self fund. It was a short conversation. Someone came round to fit a banister and that was about it.
The GP is aware that my dad is a carer but again no advice from them
Age UK have given nice advice over the phone but nothing that is really tangible.
They live in the north east of England, there's limited services available in our town.
Unless I'm ringing the wrong people but i feel like there are so many closed doors.

No Admiral nurses in the area either.
I will ring today and ask for another needs assessment given the developments of the last week

i know it's really frustrating OP. Did you speak to their local Age UK or the national one

what did the social services assessment of care say? Did it say her care needs could be met with 4 x a day cater visits? What about your dad's carers assessment? What fud that day? Have you got a copy of them?

edited to add the GP only record your dad is a carer but isn't responsible for assessing his needs - that's social services job

My DM is self funding but SC have arranged all the care themselves, done the care plan for what it should cover and liaise with the care company directly. All we do is pay! I would contact SC again. Perhaps you have been too willing so they’ve not stepped in. You really have to be stoney and say you can’t do it/it isn’t working.

You should have been given a written document detailing what needs to be put in place to address your mum's needs and support your dad. GPs generally don't have input into this, it isn't their job. A care assessment is very specific and, as pp said, completely separate from a financial assessment.

My mother and father were in a similar situation. Ours was compounded by my dad insisting he could cope. I managed to persuade him to visit us for a week and put mum in respite care. The home - a standard one not a specialist unit - called him that evening to get her as they could not cope. With my urging, my dad explained carer burnout and stated he would not be collecting her. A specialist home was organised the same day by SS. My dad initially thought he would go get her after a week but once he had some time free and his first decent sleep in months, actually realised the situation he was in and supported her to remain. He visited daily and spent his time ensuring she was cared for properly.

All communication must be in writing. You need an email trail. Any phone call that happens must be followed up with an email record. Especially if that conversation included any fobbing off.

This was absolutely the best thing to do. It is hard, but sometimes the only way.

Is there a dementia support service in your area? Our local one is run by Age UK and people can have a support worker who visits and advises on these type of issues.

You’re not the only person to find that SS disappear when there’s funds available. The fighting is incredibly draining. Things have changed, ask for a reassessment- ring up when you are at the end of your tether and break down on the phone if that’s what happens. This situation is not ok for your dad.

What do you, as POA, think is in her best interests? Is there enough money to make a serious choice - eg is her half of the money available enough to choose a dementia care home at £60000-85000 a year for two years? Yes they do sometimes force people out and into an ambulance. Not a nice thought but if that is the plan, you can start asking GP and social services how it could happen. See her GP, start the conversations. Any GP will have seen this many times. There may be options such as admission to a specialist dementia ward if things get dangerous or she is violent to your dad.

Being in a dementia home and being able to build relationships with individual staff members may improve the washing situation. In the meantime consistency and long appointments would really help, plus skilled communicators who don’t do everything with language, just do things like run the bath/start the shower and hand your mother a flannel while talking in a gentle voice about nothing very much, spring flowers or something. If you can throw some money at employing the same daily carer to do one of the calls a day might help?

You have my heartfelt sympathy OP. It is an absolutely horrific experience to go through. I hope someone in the thread can help, but in my opinion,
one way or another, she needs to be in a home surrounded by people who know how to manage the situation. I feel your pain. It’s so unfair.

Of course a care home would take her, they are very used to dealing with double incontinence and all sorts of other needs of people with dementia.

And honestly she does need a care home now, for her own sake and everyonelse's. And it is a huge advantage that they have savings and can pay for her care, because they can choose exactly where she goes and when.

My mother used Home Instead (they were lovely) and I then moved her to a care home. During the last two years there she was immobile, doubly incontinent and could not feed herself. The care home kept her safe and clean and the staff were absolutely lovely.

You do not need Social Services. As you have found, they will do nothing because she is self funding so it's a waste of time. I did not involve SS in my mother's move to a care home.

Have a look on https://www.carehome.co.uk/
filter by 'dementia' and look for a suitable care home in your area, ring a couple and talk to them about your mother's needs and go in to have a look round.

There are private care homes offering specialised dementia care. I live near one. Sounds like you can fund. Agree with above, leave SS out of it.

@Nofksleft2give almost every dementia care home is private nowadays. In our county there is only one local authority care home. Social Services deal almost exclusively with private care homes now. My mother was initially self funded then her funds ran out and she switched to LA funding, and remained in the same care home.

That is fine if you are confident there are unlimited funds that will last for years. If not, you need the SS financial assessment to protect the placement if the money runs out. A place in a dementia unit can be upwards of £7K a month.

Different in Scotland.