Mum has dementia and refusing help

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.

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

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.

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

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

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.

@notanaturalmum it sounds such a hard situation. How are things now ?

@PyramidsOfMarsBar you said in an earlier post back in June
Yes a capacity assessment could be useful but it's not a legal requirement,
Do you mean that given all the relevant caveats re capacity being decision based, info presented in an appropriate way, that it isn't a requirement for capacity to be assessed for each decision?

How are things going @notanaturalmum?

This.
We had the very devil of a job to get my DM to have a shower or wash her hair while still at home (I usually gave up trying) but the care home staff seemed to manage it fine - she was always clean, with nice clean hair. Maybe their uniforms helped - they looked more like nurses.

As others have said she has to lack capacity fir that decision at that time. She can make bad decisions as long as she understands the consequence of her decision.

Agree- The situation will just get worse. She is a danger to herself and others.

It would be easier for everyone if she was in a care home.
They're used to washing patients who object and they can give prescribed sedation if necessary.

Sounds as if she is a danger to herself and others in that she’s refusing everything necessary to care for her, and has already hit her husband. This will only get worse The father is terminally ill, and this is causing problems at a time when he needs support himself. It sounds as if nothing can be done unless she is sedated

I'm absolutely for respite care in principle, but this is quite common and often there is then no going back: 'her behaviour deteriorated whilst in respite'. Mobility, cognition, mood, behaviour, can all go downhill in institutional care even if it's very good and I think we can all recognise that despite their best efforts, there are a lot of problems with staffing levels and experience in the NHS, and it is well documented that language barriers sometimes do play a part, especially with patients who have communication barriers themselves, no matter how wonderful a carer that individual is.

I think it's mostly about OP getting clear about her rights and responsibilities under the POA, and getting her GP, social services, District Nurses and other services involved to actually do what they legally need to do, instead of lots of handwaving. If a patient without capacity needs sedation for essential healthcare to take place, so be it - some people do. It'll be no good if she develops an ulcer or gangrene and loses the use of a foot, will it?

I do know it's very very hard to do all that OP, we've had to develop skins like rhinos and I'm still not entirely satisfied with the job I am doing as POA.

PS Is your mother under a Memory or Dementia service, OP? She should be.

Ask for a best interests meeting with gp for specific issues eg toe nail cutting etc and for each decision

I don't think the issue is necessarily that she needs a care home, although she might do for other reasons. Because the issue of consent can still be a problem in a care home, the understanding of capacity and the use of your POA for your mother can still be misunderstood in a care home and might be more difficult to sort out in practice, especially with high turnover of staff, too few staff, or language barriers. And you can't monitor as carefully who is coming in and giving or denying treatment, erroneously, when your mother is not at home. We have had a lot more problems when our relative has been in hospital, or the handful of times they went to a care home for a rehab or respite stay, than we do at home.

You can only use poa if she lacks capacity and a hp won't authorise a family to sedate someone to move against their will in,ess they were in danger to themselves or others.maybe youd get more help if you approached the gp and social servcises if you made dad the main concern , he shouldnt be left caring for her. Her lack of hygiene, other health issues and refusal to get herself help impacts on his health and wellbeing and that's not fair.

I have POA but I haven't really exercised it in that I already liaise with doctors/carers so at this point it isn't offering anything extra. I can't use it to force my mum to receive treatment.

Oh but it does offer something extra. The whole point is that you can actually consent on her behalf as though you were her, if and when she does not have capacity to make a decision. If she doesn't have capacity for whatever the decision is that needs to be made, at the point it needs to be made, it's up to you. Legally, it's YOUR responsibility to be content that you are acting appropriately within your remit as POA, and there are legal mechanisms for HCPs, other professionals and concerned family or friends to challenge if they think you are not. Yes a capacity assessment could be useful but it's not a legal requirement, and often capacity is variable so a snapshot assessment isn't going to give all the information needed to decide. Consult a solicitor who specialises in this, if that would give you confidence, and then advocate for your mother and yourself as the POA.

Healthcare professionals often haven't had a lot of training on the Mental Capacity Act 2005, we're forever having to set HCPs straight especially if they don't understand dementia or certain other conditions very well. It's also very hard for them when they don't know the patient and are rushed off their feet. They usually don't argue back because we have made sure that we know our stuff and can articulate it, although sometimes they go off 'to check' and then come back with a different attitude. It is of course a good thing that they do check if they are not sure. Although having to rexplain umpteen times is very tedious.

It's very important for POAs to be lodged on file, even if they are are not yet applicable or only applicable some of the time. But the NHS is very flaky on POA. They should ask regularly and get that on file, as should social care, charities involved with the patient, etc. But we've been asked approximately twice which is about 100 times fewer than we should have been (given the different parts of the system that are involved). And I did have a polite but longwinded argument with a charity not long ago who just would not or could not 'get it' (and also couldn't grasp the different types of POA). So you have to be proactive.

Make sure that your mother is also being given information in a manner, and at a speed, that is appropriate for her, whether she is going to be making the decision perhaps with some additional frameworking from you, or whether it's you making the decision, and is treated with respect even when you have made a decision for her. And that she and your father has everything above the very trivial written down by the HCP to be referred back to. It's such a struggle for us to get that done properly too, it makes me quite cross. (See Accessible Information Standard 2016)

It’s not fair in your Dad to have cope with all this when it sounds as if he needs help himself. Wouldn’t your GP authorise for her to be sedated and taken to a care home , or possibly hospital as her physical health is suffering? It’s going to come to crisis point soon, so surely better not to wait until it becomes even more distressing for your mother and father. Having POA means you can make the decision on her health, so it may be time to use it.

Can you put in her in respite for a couple of weeks to give your dad a break? Fil with dementia, Mil was on the pathway for diagnosis and displaying strange aggressive behaviour. Mil never came back and went straight into a care home as her behaviour deteriorated whilst in respite and they got an emergency DOLS put in place.

Oh goodness. This sounds like my own mother’s dementia pathway. My brother was her full time carer and it destroyed him after a while. She’s been in a home for about 18 months now and honestly, plan for this outcome, OP. It will benefit everyone. Your poor dad. I’m sorry his cancer is terminal. But once he goes, which will be so hard, I’d have mum ready to move (she won’t be ready but if you can get all your ducks in a row and prepare for the inevitable, the transition to a dementia care home will be easier).