To wonder when a care home is appropriate.

[Nug97]

My Daunt has early onset dementia. She is 63. Things have progressed recently. She has withdrawn from her adult children and won't see them for very long and she sadly lost her husband earlier this year. I am asking here with permission from them as they don't know what to do. She has carers but doesn't interact much with them and apparently has told them to fuck off before and refuses help. She needs help cleaning the house and reminding to eat but she doesn't eat much. She won't bathe or brush hair and refuses help with this. She is incontinent and had an accident and apparently refused to clean up. My cousin had to put things in the wash and she was angry trying to hide the soiled clothes. Her car has now gone but she does leave the house by foot. She walks to her friends house which is fairly nearby. Apparently she goes there up to 10 times a day. Returns home then goes back. She is very restless. She is also convinced she still works. She doesn't turn up to work but she is retired and convinced her work are ringing her constantly and swearing at her telling her to get to work. She also talks about very inappropriate things in public.

I had to make the decision several years ago about my mother moving to a care home. It is something no one wants to do for a relative but it is sometimes the right thing to do.

Your aunt is incontinent, wandering, repeatedly seeking help/reassurance (the visits to her friend's house), behaving inappropriately and refusing personal care. To me that is someone who needs 24 hour care.

No one with dementia ever wants to move to a care home, but the point comes when they need to. And it may be that actually she will be content in a care home. At the moment she is likely to be distressed and confused whenever she is alone, so a care home may give her the reassurance and help she needs 24/7.

My mother is much older but at a similar stage and managing fine with carers four times a day. They wash soiled clothes quickly. She eats and drinks enough to stay alive and is safe. It’s a miserable existence but she is secure.

Such a young age, very sad. Honestly I think now because she is wandering and she has a right to live with dignity and feel clean and safe. The issue is with capacity. Would she go voluntarily? If not, you will need an assessment.

She definitely sounds vulnerable. I hope she's assessed soon and gets proper care. How worrying for everyone.

Is she wandering the streets to visit her friends 10 times a day though? This is the worry. Plus her dignity is affected with the soiling.

This lady is super vulnerable. Her offspring need to step up and take responsibility for safeguarding her.

With PoA that’s relatively straightforward, without it they will have apply to the Court of Protection.

This.

Thank you. Tbh I think she same as you're right, she is struggling to be alone. Having people around all the time might be what she is needing. I think she also doesn't like being in her home too because of her Dhusbands passing and all their memories in that house and it probably feels very lonely, so sad. She even sleeps downstairs on the sofa now apparently. We see her as much as we can and take her out for the full day, as soon as we return to her home she wants to go and see her friend and be with someone

She should be claiming PIP as she's under state retirement age. This will continue through and she doesn't need to claim attendance allowance. Pip is more and will go further to pay for carers.

Apply for this today and get help with the forms. You can fill them out on her behalf. And you can become her representative.

@Nug97

That's very sad @Nug97 but I am sure you are right, she needs company.

How easy it will be to move her to a care home depends on a variety of things - does someone have LPA? Can she self fund the care fees? If yes to both, it's relatively easy. If no one has LPA, and she needs council funding for the care home, it will be quite a bit harder unfortunately.

You need to contact sw for an assessment and as it's a long term condition it would be better if they managed her care

Carers need to work with service user to build a relationship so that your aunt trusts them to support her

If aunt has funds for private care, SS are unlikely to even assess her, they will simply pass on details of local private care agencies.

Aunt clearly needs full time private care, which will be cheaper in a care home than it will be to provide at home.

She doesn't clearly need it and LA could provide carers

I take it the POA has kicked in ?

@mirabai I agree Social Services won't be interested if she's self funding. That was the case with my mother. When she moved to a care home it was the care home manager who assessed her, to ensure they could meet her needs.

Like in carers are cheaper than a high needs dementia care home here. You obviously cant generate rental income from the house though- so probably about the same

Its £1600 a week for live in.

It sounds to me as if is time to start thinking about how the move to residential care will happen. This will take time so better to start getting things in place.
Someone, ideally with POA, needs to contact social services and have her assessed. Needs to see GP to rule out infections or grief making dementia worse.
Keep a record of every time she goes out, has accidents etc.
Her paranoia, work phoning, not her clothes makes it very hard to help her but speaks to the level of fear and distress she is in,
Carers four times a day is a wonderful theory but less good in practice, long gaps with no one to talk to, long period is she has an accident till she can be sorted out.
You can get monitors on the doors, trackers etc but all of this is postponing an inevitable move to a care home as she could become a danger to herself.

A care home is roughly the same. And that’s for everything, you’re not paying utilities, council tax and upkeep of a property as well. Once waking night time care is required care homes are cheaper.

It's a really difficult situation OP, I hope things work out for you and your family

We found live in carers to be at least £500 per week more. Also the cost of running the house.

And you also have to manage the carers - and that’s a job of itself.

When I looked into it for my mother, it was more expensive to have a live in carer than a care home placement. Apart from the care fees, at home you still pay for all your utilities and food. My mother's care home fees are £1200 a week.

She sounds ready, particularly if the cousins are 'overwhelmed'.
Barring acute infection, today is the best she will ever be.
I'd be getting the ball rolling.