Mum has dementia and refusing help

[notanaturalmum]

My mum has mid to late stage dementia and lives at home with my dad. They are late 70s.
My dad tries his best to care for her - cooks/cleans/encourages her to take her meds. i visit once a week to give my dad some respite.
Home instead visit every day so my dad can leave the house to go for a walk etc.
My mum is starting to struggle with personal care and wont accept help from anyone. She hasnt had a bath in weeks and we've
all tried to encourage her but shes having none of it.
she complains of pain in her foot, we cant get her to take her socks off, she won't let us or the carers or the chiropodist near. she's not brushing her teeth either.
she changes outfits multiple times a day but sleeps in her day clothes as shes quite confused with time. And she shuts the door and won't let you in to help when she's changing
the carers can't really force her against her will and we're worried for her hygiene.
what can we do. we can't hold her down or force her - she has hit my dad whilst he was trying to look at her foot.
I'm worried for the long term - if she has a sore on her foot it's just going to get worse without intervention.
we've tried all the health care professionals, they are very sympathetic but the advice doesn't really work.
i was actually contemplating sedating her today so that we could look at her foot but I'm sure thats illegal.
we want to support her but its nigh on impossible.
any suggestions please?

I had this problem with my mum too, Dad was caring for her at home. Her hair was matted and dirty and she also wasn't washing/bathing. She would put her day clothes over her nightdress, then take the day clothes off at night. I tried to wash and brush her hair but the matting was too bad and she refused to allow me to cut it. I lived many miles away so couldn't be there frequently .
I got social services involved and she was allocated a lovely carer. She would chat to mum and befriend her, slowly she got her to let her help in the bathroom and then eventually cut the matting from her hair. Her relationship with mum was the key to success. She came twice a week to bath her and wash her hair. This carer left but mum continued to allow the replacement carers to provide personal care. Eventually she had a massive stroke and ended up in care home.

Hi I'll reply properly later but in a nutshell things are just progressing a downward curve.
No tooth brushing is getting done, she's starting to smell a bit.
I can't get near her, she refuses to take off her socks and gets dead angry. The carers are kind but beyond useless.
I went to look at a care home but I think it would be so disorientating for her even if we were to sedate her to get her there.
I just need her to be receptive to help and she is absolutely dead against it.
Kind of you to ask though.
The whole family is at a loss on what to do.

@cherrytree12345 i think we are going to try a different approach with the carers.
I was thinking of finding a carer through curamcare specifically for bathroom stuff.
Someone who she might trust.
The home instead girls are the same girls who visit each week. They talk to her, sing, read, make her lunch etc so maybe she doesn't see them as carers and probably thinks its a bit random if they start suggesting she gets in the bath.
Has anybody else used curam care?

No you definitely can't sedate her.
Will she take slippers off herself? If safe can you look under a sock when asleep?
If she has a lot of behavioural issues then social services need to get involved (again?) and she may need an EMI bed

Go back to theGP or call and say you are not coping what can you do.

OP I cared for a lady who never washed, and who was extremely violent when approached.

She became acutely unwell and needed to go to hospital. It took two paramedics and three police officers to get her to the ambulance. The police had to stay with her for the whole journey to the hospital, she was so dangerous.

When I'd called the ambulance, I told them they'd need the police, and they laughed at me. Well, they laughed till they tried to move her. Then they called them.

Once at the hospital, she was sedated and treated. It took several nurses to get her clothes off her and wash her.

Every single time she needed a clean pad, they had to do this.

Don't imagine for a moment that your mother will cooperate, even with experienced carers. She won't. She'll assault them, because her response is due to acute fear.

I've encountered a lot of very violent patients with dementia.

Your mother needs a care home, and regular medication. She may need to be sectioned, actually. You can't put it off because you think she'll be difficult to get there. You're all out of your depth. Let the professionals look after her.

GPs are usually useless in these situations, unless they have a family member who has shown this level of aggression.

I think she needs to go into residential care, with the clear understanding that she lacks the capacity to consent to essential care, but this needs to be delivered. As far as saying "there is no chance she will agree to this", the truth is she is no longer in a position to make that decision, and it can absolutely be made for her now, rather than waiting until her terminally ill husband dies (or more accurately, dealing with his final illness and death alongside her enforced move to residential care).

A foot sore needs to be examined and if none of the people caring for her are currently capable of managing this and keeping her clean, then it is time for residential care. I worked in psychogeriatric care homes when I was at uni and while I wouldn't say the patients were happy to be there, I am certain it was the best place for them.

Sorry but working in the healthcare industry i know you won’t get a visit from district nurse or nhs podiatry until there is an after care issue! Probably best getting a home visiting private pod/foothealth professional to deal with issue, if they cant they will then refer to nhs, then care from the above is offered IF it is needed.

None of that is going to happen because the OP's mother will become aggressive if someone tries to look at her foot.

This is a lady who doesn't wash or put clean clothes on because of her dementia.

She isn't going to cooperate with anyone taking off her sock.

Irrelevant, i am answering the comment saying that podiatry or district nurses will look at it without referral and commenting on the process. Whether the patient will consent or not is not what i am concerned with.

Have you read the OP?

There's no point making a referral for a patient who won't cooperate. If she won't let her daughter take off her sock, she won't let anyone else take it off.

Your advice only applies to a cooperative patient.

Yes, I DID THANKS! FFS, i am not suggesting the op make a referral. Never mind!

@notanaturalmum no experience of corum but they look good on the website.
This
https://lottie.org/home-care/
organistion has been suggested to us by a local London based dementia
specialist.

I’m so sorry to hear of your ongoing struggles.

This was our situation with my MIL who had advanced dementia but refused any help and a FIL with cancer (unbeknown to us at the time) who was struggling to cope. MIL wouldn’t wash, brush her teeth, wash her hair. And it got to the point that FIL let her sleep in her clothes and sleep in until 3pm every day (as it was easier).

When FIL suddenly died of cancer (he had hidden he was ill) - we were left to deal with MIL. We moved her in with us (as we live quite a distance away and run a business) and very quickly we realised it wasn’t sustainable. MIL refused any help or support which meat my DH (her son) was having to take her to the toilet, shower her - against her will.

After a few weeks (and no sleep or rest bite from the situation) we had no option but to find a care home. We were at breaking point.

We are extremely lucky in that our council (in Surrey) pay for the first month of care. My DH did have POA and although it was against MIL’s wishes he took her into the home for ‘a trial’ he told her. The day she went - there was tears, screaming, refusal but she did have to go in - we just couldn’t cope any longer and she wasn’t getting the care she needed.

Someone gave me some great advice - when the person has no idea of the effect they are having on you, then it is time for them to receive specialist care.

MIL has now been in the care home for 2 years and is absolutely in the best place. It’s a specialist dementia home and she receives fantastic care. The nurses take no prisoners and she is well looked after.

The best place for your mum is a care home. Your poor dad is living his life with a terminal cancer diagnosis looking after her - you will regret that he spent his last months looking after her rather than looking after himself.

Good luck 🤞

@notanaturalmum passing on suggestion to check agencies by looking at
https://www.cqc.org.uk/.
But you may have thought of that already.

My point is without consent you need to be looking at capacity, consent should also be your main concern. No private podiatrist will see her if she refuses.

Please think of your father too. It sounds like your mother no longer has capacity and needs specialist dementia care. Your father must be exhausted with all this going on. If you won't put your mother in respite, how about giving him a break instead.

Get social services involved and request a mental capacity assessment. She isn't able to recognise and address her own needs and welfare and needs an intervention. It's not acceptable to leave her to her own devices when she clearly lacks capacity.

Sorry OP, I have just read your update. Do you have POA, if so what for? Does she have a social worker (I presume so if she has carers)? Has she ever had a mental capacity assessment?

Have you just given her access to joggers, t-shirts, ie comfy clothing that can be worn day or night?

It sounds very stressful and it does seem like eventually she will need nursing home care

If your mum is hitting your dad then adult social care would consider that a safeguarding issue for him as her carer.

Not getting appropriate care for her feet is also neglect even if its being done because you are afraid of the reaction from her and you don't want to upset her.

You are out of your depth and this needs professional help before someone gets hurt.

If you have LPOA for health you can make the decision that she needs to go into 24 hour care but you are going to need professional help to get her there as it may require ambulance/police/a mental health act assessment.

The local authority s.42 safeguarding process for your dad is will most likely to instigate getting all the right people involved to intervene in the current situation. Most local authorities have an online reporting form for safeguarding but if yours doesn't you should be able to ring them tomorrow to discuss it.

. If you won't put your mother in respite, how about giving him a break instead.
@unsync bit harsh, as you can see from safeguarding social workers post , putting someone into respite is not exactly an easy or straightforward process.
As indeed it shouldn't be .

Agree with this. It is so difficult but needs to be sorted. Very similar happened with my mum (anger, refusing, screaming blue murder at the doctors, etc). Ultimately you have POA and you need to use it. She needs a Home environment now by the sound of it. We got my mum into one (no, it wasn’t easy to get her there but we insisted) and things improved immensely.

@notanaturalmum @whatwouldyoudoifisangoutofkey Apologies I didn't mean for my post to be harsh. I've had one parent die from cancer and the remaining one has vascular dementia. I was trying to say, rather clumsily as it turns out, that sometimes one person's needs can be overlooked when the other person's needs are so acute.

It must be a terrible struggle for your father watching the people he cares for going through everything, whilst also facing his own mortality.

As unpaid carers, it is hard to know what to do for the best sometimes as we are often fighting fires on many fronts. The information and help we need to do so is more often than not spread out or unavailable. Again, apologies @notanaturalmum if my pp upset you, it was not my intention.