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

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Hi Maremia. I agree that the issue is patient confidentiality. I will do as you suggest and see if by a few judicious questions I can at least find out if the surgery have contacted them re a check up visit. It is all so difficult when you really care about someone's welfare, but are powerless to do anything .

I suppose that is because of patient confidentiality.
Can you suss out anything, by getting in touch with your sister, to find out 'how they are'?

Hello everyone. you have all been so helpful and I have bitten the bullet as regards emailing her surgery. I waited for just over a week for some acknowledgement of my email. I know surgeries are incredibly busy so I would have been happy with a short automatic reply but in the end I rang the receptionist who said my email had been received and the issues are being dealt with. I asked if I would be contacted just to check on my concerns, but she said I would not. She seemed very surprised that I'd rung to find out what had happened, if anything, vis- a -vis my email. I know my sister's medical issues are private, but I'm no further on than I was before.

Thank you everyone for your helpful suggestions. On the advice of her surgery I have sent her practice an email detailing all of the areas of concern, particularly that she lies on her back to eat and drink. This I know from talking to a nurse is very dangerous, not just from choking . I will post when and if I hear anything.

It's possible that the lady has not only MS but also hypothyroidism. The latter can resemble depression but is easily put right.

I have ms and it is difficult to accept the loss of independence, your sisters arrogance may be masking her fear of becoming totally reliant on others. Both your sister and her husband need to be talked to in clear firm language. Should she continue to be dirty and scruffy then she will get scabs and bedsores plus terrible skin ailments leading to admittance into hospital--- so much for arrogance then! She then may find it difficult to return home. Perhaps if all this was explained clearly to them help would be accepted. Ms is a terrible illness but is no excuse for being dirty and unkempt or rude.

I can fully understand that you want to help and have already involved social services whose assistance has clearly been refused. Unfortunately there is not a lot can be done. I was involved in looking after my next door neighbours son who was suffering from advanced alcoholism and unable to walk. His Mum (in her 90s) would call out the GP, but he would refuse to allow them into the room where he lived. He was deemed to have capacity and the GPs would try persuasion, but it always failed and they would leave without examining him. The same happened with numerous carers from an agency and with social services. He collapsed a couple of times and was taken into hospital where he would stay until he could discharge himself. Things got very bad towards the end, but still he didnt allow anyone to help. Its deeply frustrating and worrying but we discovered that it is the right of individuals to refuse assistance and the professionals will uphold that right.

Perhaps your sister has fluctuating capacity to make decisions. Could you visit and suggest that your BiL have some down time and get some fresh air, while you help your sister have a freshen up. While doing that you could suggest that she needs additional care due to her increasing needs. It may well be that your sister feels she has reached the end of the road, in relation to her lack of quality of life. It sounds like she needs some psychological support in order to explore and express her needs and preferences as well as hospital bed and a care package. I would suggest that she needs a holistic approach to her health;
Involving emotional, psychological, physical and social aspects. The GP or community nurses should be able to point you in the right direction.
I do wish you lots of luck, please let us know how you move forward.

mantaray

Hi Everyone. You have all been so helpful and I am going to get in tough with her GP and Social Services again. The only problem is that all of these agencies have to let my sister and her husband know in advance of their visit and also who has raised concerns about my sister's wellbeing. My brother in law was not at all pleased about my last Social Services referral, so I don't want to alienate them completely. If only it was possible to have an anonymous conversation but I know this would invite all sorts of crank and malicious phone calls. However it would be nice to have a confidential talk with the with doctors and social workers without dreading the possible repercussions.

Are you absolutely sure the GP or and SSD have to name you, mantaray?
The only time I've done this myself was to my GP who was also X's GP, and I reported suididality.

Of course the GP did know me (ie trusted my concern) but most definitely did not reveal a source. A "we are checking all this or thats" visit took place.

It's not like you are a stranger, you are her sister (btw, who is the Next of Kin, they could act?)

Is there a local
M s home or centre she can go for “ respite” there is one in Bedford.
Her partner gets a rest. she gets looked after properly with facilities that can cope with her needs.
The respite can be extended. If she does return home and always keep things you say to her v v flexible then the house can be made more ready for her by OT visit and help .

I completely relate to your situation my sister was the same . She had diabetes and had a leg amputation. She lived in grubby pyjamas , sat on the sofa all day watching telly and slept in the sofa at night . She never went out of the house. Greasy unwashed hair, dirty fingernails etc. she did have a carer who visited to make her food but thus was sandwiches and microwaved pies nothing particularly healthy or nutritious. She declined any other help, invitations etc and didn’t answer her door to visitors or even hospital transport for hospital appointments. She was hospitalised several times but always ‘self discharged’ and invariably ended up back there and did the same thing again. There was nothing anyone could do she was stubborn to the end .God bless her x

Hi Everyone. You have all been so helpful and I am going to get in tough with her GP and Social Services again. The only problem is that all of these agencies have to let my sister and her husband know in advance of their visit and also who has raised concerns about my sister's wellbeing. My brother in law was not at all pleased about my last Social Services referral, so I don't want to alienate them completely. If only it was possible to have an anonymous conversation but I know this would invite all sorts of crank and malicious phone calls. However it would be nice to have a confidential talk with the with doctors and social workers without dreading the possible repercussions.

Oh gosh that is terrible the poor couple and how awful for you too to be unable to do anything

I agree with the GNs who are suggesting that depression seems to be part of the problem. NHS Talking Therapies has a short waiting list and self-referral can be done online in most areas. Therapy is often offered remotely. Social support is helpful in depression so companionship is a good place to start and there is bound to be an online MS support group.

EmilyHarburn

This sad situation needs to be suported and can only re resolved by the local safeguarding team. I looked up Lancashires.

You may find this inforation useful
lancashiresafeguardingpartnership.org.uk/p/safeguarding-adults/self-neglect-hoarding

Find the entry for your sister's area.
The definition of self neglect will moprobably be the same
Types of Self-Neglect:

Lack of self-care to an extent that it threatens personal health and safety.
Neglecting to care for one’s personal hygiene, health, surroundings or living environment.
Inability to avoid self-harm.
Failure to seek help or access services to meet health and social care needs.
Inability or unwillingness to manage one’s personal affairs

Pick the types that are relevant and write or phone the telephone number or email thatis ofered using the phrases that are relevant.

Good luck

But how do you suggest mantaray presents the husband in all of this?

She can't pretend he isn't there in the report. Ie you would be have to be basically accusing him of either neglect or himself unable to cope.

They are dealing daily literally with actual crisis situations, remember, as priorities,

poo round the house. Rotting food in the kitchen. Sores and ulcers untreated. Not enough food in the house at all. No personal washing at all or ....you get the picture.

Has it yet reached that point

A wheelchair ♿️ for outdoor walks

This sad situation needs to be suported and can only re resolved by the local safeguarding team. I looked up Lancashires.

You may find this inforation useful
lancashiresafeguardingpartnership.org.uk/p/safeguarding-adults/self-neglect-hoarding

Find the entry for your sister's area.
The definition of self neglect will moprobably be the same
Types of Self-Neglect:

Lack of self-care to an extent that it threatens personal health and safety.
Neglecting to care for one’s personal hygiene, health, surroundings or living environment.
Inability to avoid self-harm.
Failure to seek help or access services to meet health and social care needs.
Inability or unwillingness to manage one’s personal affairs

Pick the types that are relevant and write or phone the telephone number or email thatis ofered using the phrases that are relevant.

Good luck

Is she depressed, if so unless she accepts help she'll sink further down, she needs to consider bad circulation and leg ulcers, the only other option is to get her sectioned to save her life, this seems harsh, but it may be what she needs to save her life

sandye

Sorry but I would be calling adult social care, They are experts at this sort of thig and will be able to send help if applicable. Also some respite care for hubby.

I would call adult social care too. It sounds like it is becoming neglectful

I am in agreement with fallingstar! They could well be suffering depression and perhaps a phone call to their gp might be worth trying. Sometimes it becomes a vicious cycle which is extremely difficult to break. The gp might be able to persuade them to accept the help on offer. It’s heartbreaking to watch, my late husband had delirium and the hospital took over his care decision which actually made it less stressful for me, but not sure if this is the case in your situation. Good luck and hoping you find a solution that they agree to.

Sorry but I would be calling adult social care, They are experts at this sort of thig and will be able to send help if applicable. Also some respite care for hubby.

Can you not talk to them in straight language. When husband says we are managing fine reply
Obviously not my sister is unwashed, her hair is dirty and so are her clothes. You probably would need a wheelchair to get her to the shower and someone to help you lift her.
Try it as everything else has failed

I think that's a good move. a sister is close enough to warrant being heard with genuine concerns. have you considered setting them out simply on paper so it goes into her records, even if the outcome this time is that the situation is not yet such they can intervene (or ask Mental Heath or SSD to intervene, they can ask SSD Adult Services to intervene.)

Bear in mind if the situation is not yet dire for official intervention they may say sorry, but they both have capability, etc etc, they can legally only 'interfere" with an adults' life under certain circumstances.

I agree with Cossy that they don't want our help, but they are also very evasive. One minute she has an MS specialist and the next minute she's saying she's never seen one. The same with the MS nurse. Cossy asked if they have children or friends and no they have neither. My sister did have an old school friend who lives in our home town, but she has been so superior and arrogant toward her that the friend has stopped taking her calls.
How do I know this? Because my sister has told me what she said to this friend and I was flabbergasted at how nasty she was. Her explanation for the rift is that the friend must have dementia! !
So you see how difficult it is to do anything for her. however I'm going to contact the surgery again as physically she has deteriorated since I last spoke to them. Hopefully they can send a nurse out to check on her and I'll inform them that they must see if she can get up off the sofa as she'll lie and her husband will back her up.

I agree with Cossy's last post. If all sorts of her have been tried, particularly to get the husband "on board" (this struck me, from the beginning, as the key) there is not a lot you can do until there is some kind of serious crisis. I would think almost certainly she is very depressed, but both might not be able to "name" or recognise it. Or be too proud to admit it.

It's so sad, because there often is fear its the end of the life they knew for so long - and this is realistic, after all - ostriches with heads in the sand

but it's sometimes the way. things have to break down as in for example - failure to clean after toileting needs are not dealt with, her body develops sores and so on , any kind of identifiable self harm. It might end up being needful to call on MH authorities as well as GP/SSD.

But definitely chat it over with Age UK at length for all the "ins and outs".