Very worried about disabled sister who never gets up off the sofa and hasn't been out for months.

It all sounds very sad and worrying, but being totally honest, if both your sister and her husband “claim” they are fine, maybe they just don’t want your help.

You could contact social services yourself again and simply tell them your concerns, in theory they should follow this up, in practice who knows!

Does she not have any kind of MS specialist?

I think you’ve done your very best and you and your other sister might just have to leave them to it, however much this doesn’t sit well with you, you’ve done your best.

Do they have any children or close friends?

Sorry I repeated the word situation so many times !
Tomorrow I'll visit an elderly lady and I think that she's afraid of her daughter at times.
The daughter does a lot for her and is kind , but is so opinionated about things.

mantaray-
I see the situation now.
It's really unfortunate,but I've experienced it before.
People,who help them have to be socially acceptable and have the right education.

I'm sure that you're aware of the appalling health problems that your sister will suffer if her situation as regards personal hygiene doesn't improve.
She'll eventually end up in hospital.
I feel so sorry for you in this situation.

I do not know what your relationship with your sister is like but could you shame her into getting herself clean by telling her she smells awful? Perhaps she does not realise, being in the same room continuously that it is not a pleasant place to be?

Mantaray the memory loss you describe can still be down to some sort of dementia. I think as a society we’re conditioned to think of dementia as the classic Alzheimer’s version, memory loss, inability to recognise people or hold a conversation. There are lots of different kinds of dementia, with differing symptoms. One can be loss of social skills, eg spending big amounts of money on needles items, or inappropriate food consumption, speech difficulties.

My 98yo mother has lately begun showing signs of dementia, eg she tells you the same story three times in half an hour, makes preposterous claims about what people have said/done to her, fantasises that she’s been out on various adventures and so on, yet she can tell you the day it is, what she had for lunch, all about the latest in politics and the news. To an outsider, she seems very sharp but scratch the surface and it’s not at all as it seems.

I do hope your sister comes to accept some help.

No Esmay, they didn't refuse help because of pride or shame. They have always considered themselves to be superior to other people. My sister has always been scathing about people, such as an MS nurse who once visited. Her complaint was that the nurse knew nothing about Shakespeare!
I've told her that she could get a hair wash, a meal and physio at the MS centre, but she said that they went once and one of the staff was rude to them so they never went again. This has been a pattern all through their lives when in reality they don't like other people.
Added to this is the fact that my sister is a compulsive liar. she was so jealous of our youngest sister that she told a number of our aunties( who are now deceased) terrible lies. For example she let them believe that our sister who lives 6 hours away from her, refused to visit, omitting to say that this wasn't possible as our sister's husband was very poorly with thrombosis in both legs and serious eye problems.
It is impossible to get a straight answer out of her, but I do believe that her husband could do more. I did have a word with him when Social Services had visited. He was icily polite and told us that they were managing fine. My sister never said a word. However she has deteriorated since then. Her memory is very poor, but once she gets into a discussion she is very sharp. This make us think that her memory lapses are due not to dementia, but to lack of stimulation.

Has your sister any other signs of low mood such as saying she does not care what happens to her?

Is it possible your sister has clinical depression? Apathy abut self care is a sign of clinical depression. Your sister's husband may not know this is a sign of clinical depression and so he fails to alert her GP to this clinical sign.

I don't think this couple do lack capacity. Yes they live in a cluttered room, the personal hygiene of the lady with MS Maybe worrying to you, but social services did visit, they said there us nothing they csn do.

What can Age UK do, it may not be how we choose to live, but if they refuse help, there is nothing they can do.

Your sister imho is obviously suffering from a deep depression brought on by her physical condition, but am concerned that her husband is not being more proactive about this, surely in the circumstances he could register as her full time carer with the GP, I did this when my DH had a stroke, and this means he can raise issues directly with the GP and initiate a meeting with his wife to discuss this.
Above and beyond this I don’t know what else you can do because I imagine her husband is already down as her next of kin. What sort of relationship do you have with your brother in law??
Can you suggest this to him?

kittylester

I do understand what 'loss of capacity' is (one of my volunteering roles is helping the Carers of PLWD) but as members of society we have an obligation to act if someone is in obvious danger which the op's sister would appear to be.

Equally, anyone with capacity has the right to make an unwise decision....and if it doesn't put anyone else at risk then that's their choice

I do understand what 'loss of capacity' is (one of my volunteering roles is helping the Carers of PLWD) but as members of society we have an obligation to act if someone is in obvious danger which the op's sister would appear to be.

KittyLester 'loss of capacity' usually means dementia in some form so that the person so described cannot manage their lives and will have difficulty handling banking and ordinary life events.

This couple seem to be managing their lives and to be capable of rational thought, although as far as personal care goes they do seem to be caught in a vicious circle. But like the couple I dealt with, who were being physically abused and coerced by a live-in son, everyone knew it, it had beem observed taking place. But the couple were rational to talk to were managing their lives, paying bills, maintaining the house, doing the shopping. Their decision to live under the regime of their violent son, may seem irrational, but it doesn't mean an overall loss of capacity. These situations are, sadly, all to common, but there is little that can be done.

On the other hand when my aunt who was looking after her husband with dementia then developed dementia herself, we were able to go in talk to social services and take over their lives, because they were both clearly incapacitated and unable to manage their lives in any way; bills unpaid, pension cheques uncashed, Frozen food left rotting on the garage floor because there was no room in the freezer.

Monica, the sister is clearly risking her health. I maintain that the op should ask AgeUk for advice regarding her concerns.

I do, currently, volunteer for AgeUk.

How sad ! Please contact AgeUK and Social Services …..

kittylester There is nothing in the OP to suggest that either of this couple have lost capacity. They are clearly making decisions that seem unhelpful to other people but they choose to make for themsleves. This does not mean lack of capacity. Unfortunately when people behave like this, there is nothing you can do except watch and wait and be ready to respond when the crash comes.

I used to work as a volunteer home advisor with Age Concern(as was) and several time I was asked to visit families like this, we were the last people to be involved after family and social services had failed - and often we just had to walk away as well.

I am still at times troubled by a case of elder abuse I was involved in. Everyone knew about it, social services, the police and - eventually me - as a representative of Age Concern, but until the couple being abused would make a complaint and admit, in full what was happening, no one could interfere. They told me that all they wanted to do was die. I never knew the outcome, but it still troubles me.

I think Sue is on to something. It sounds as though she does lack capacity. Contact AgeUk for advice.

This is a very sad situation- if your sister is not clean - apart from the appalling smell sooner or later she'll have fungal /bacterial skin and urine infections as well as ingrown toenails....
And bedsores from not being lifted up.
Once it happens ots really difficult to treat .

Why do they refuse help ?
Ot is due to shame or pride ?

Can you speak to her GP ?
I'd press social services to call again .

Wishing you luck in dealing with this horrible situation .

That’s so sad! Silly question but have you actually tried, very discreetly, to speak to her

That’s a very hard situation, when people refuse help.

I’m not sure what can be done unless there is a case for the person to be declared not to have capacity and SS can then help.