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?

Have you thought she may need a home? My mother in law went through this, even though we had a care package in place it had come to a point that she needed more help. Can you speak to her doctor/social care team?

That sounds very difficult. I’m sorry I don’t have any suggestions other than going back to the healthcare professional and try to make it their problem (because it will end up on their plate if she does become unwell).

Ask fir a capacity assessment, dies anyone have power of attorney. No you can't sedate her against her will, has anyone tried offering a foot spa, you could all do it, say its good for your feet in this hot weather.

It sounds like she'd be better off in a care home.
Her dementia is going to get worse. She needs proper nursing care.
What does your dad think?

Refusing hygiene seems to be a pretty common phase. How much of a problem is the hygiene issue, really? Can you live with it for a while, as it may pass? Similarly the changing of clothes and sleeping in her clothes - in the grand scheme of things does it really matter? Trying to control it may contribute to her confusion and anger.

The foot is more of an issue - but she really won't show it to anyone it will either get better by itself, or it will get worse. If it gets better that's fine; if it gets worse then she may decide she does want someone to look at it. And if you can bring yourselves to let the hygiene issues go for a while to reduce the tension she might be happier to show it to you.

It can be very very difficult to give someone with dementia the care you want to. Sometimes you just have to accept that their world is now different, and focus on what really matters to their wellbeing.

Any POA?

You need a capacity assessment. Then district nurses / podiatry can look at her feet without consent but 'acting within best interests'.

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.
I would rather in home care rather than a care home mainly because there is no way she'd go of her own free will. Its such a struggle to get her to leave the house. Even to stand on the front steps to take a family photo is a feat in itself.
Quick back story, my dad has terminal cancer so it's assumed that my mum will go in a home once he passes as long term i cannot manage my mum.
I have a FT job plus two kids. My sisters live further away but still in uk. They are helpful but i do the lions share (even though they both dont work full time or have kids but never mind). So maybe a care home later when we have no other option.
We can get a nurse to the house but mum just doesn't co-operate. Blood tests/blood pressure checks - she just refuses and the people leave empty handed.
I could cope with the reduction in hygiene I guess but she needs to brush her teeth.
I just want to know how other people have managed in similar situations x

I think we've had a capacity assessment- a dementia nurse came last week to the house and chatted to my dad and me but we didn't really get any tangible advice.
There's no doubt she needs help but she just doesn't want anybody coming near her and gets so angry and accuses us of interfering. She will shut herself in her bedroom and not come out.

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).

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.

With regards to moving her, we don't have a hope in hell.
We (and the carers) cannot even convince her to walk to the postbox let alone get in a car and drive somewhere.
We are so creative with our suggestions and she's so stubborn. We would have to drag her kicking and screaming (which obvs i wouldnt want to do).
We're kind of stuck.

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.

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)

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 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.

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

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.

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

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.

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

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.

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.

How are things going @notanaturalmum?

@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?