i need fast advice for my dear sister

[mydearsister]

my ds is 75.
She has been in itu for the last week.

*she has endured bowel cancer for a number of years.
*her remaining kidney isn't functioning well, but has been stabilised now.
*she can't walk, the result of kidney infection , black feet and swollen legs. completely bedridden.
*she lives on a 11 floor flat in London.( her dh refuses to allow her even a tv to watch even though she is a virtual prisoner in her ...squalid home)
*her dh is 85, , sometimes he isn't aware of his surroundings.

last time this happened 3 months ago, my dsis admitted that she couldn't cook...couldn't stand...couldn't shop, couldn't walk...when she was discharged that time, she was offered palliative care, but it was turned down.
no family/friends nearby, I am the closest but 3 hours away.
they are totally alone.
each time dsis reaches A&E, it is because of her non existent care at home.
each time this happens I have told the nursing staff re her home conditions, but nothing has been acted upon.
they say, which I understand, they can't force anyone to accept help.
I am 71, and can't bear to hear how my dsis is living a hell like existence.
each time she is admitted to hospital, she begins to eat again and is stabilised, but then returns to her living hell.
she may be released this week again, but released to what????

Get social services involved?

Social services? She would be classed as a vulnerable adult I'm sure.

And / or her GP?

Can you contact adult social care in your area?

She sounds like a vulnerable adult and needs services. She is definitely entitled to an assessment of her needs.

There will be an out of hours number on your local council website

Have you tried social services?

As a vulnerable adult they may be able to help. They cant force help on her but they may be able to find her more suitable living accommodation, or would she want to return to her husband? It sounds like he is in need of care too if he is not aware of his surroundings, a person with dementia cant be a carer as if anything they need care themselves.

Have you spoken to the doctors about his issues and asked if they can help you get him assessed?

Would she/could she live with you?

Your poor sister. She needs help from Adult Social Services. The hospital should be able to make the first call for you/her whilst she's still a patient. As long as she's honest and you are there to help she'll get the care she needs.
But be prepared that it might not be in the home she's living in now.

Yep, adult social services. And Age UK might be good for advice.

Another suggestion here for social care- this sounds like a safeguarding issue. Have a look on her local councils website for numbers if the hospital dept is shut. There is an out of hours service too which will have a number.
What about help the aged and age concern? Not sure what they offer these days but they may be useful
Good luck op sounds awful for your sis

thank you for the replies.
a social worker did visit once, but nothing changed.

I offered organising meals on wheels for her, but the husband didn't agree..he was/is always the boss.

she admitted to me yesterday she hasn't had a washing machine for a number of years, which with stoma etc hygiene is critical.
three days ago, I spoke to the itu staff and clearly defined my dsis's living conditions, they said a case conference will be held.

but dsis husband rang me last night to say dsis is coming home today, with nothing in place.
he said "she has been in hospital for a week now, it is time for her to come home"
i'm just about to ring the hospital to see what's going on

I think you need to intervene and tell the hospital she's vulnerable and her home conditions aren't safe.
They'll have to make a referral to social services.
Your BIL sounds horrendous
Explain to the hospital that she's being abused in her own home and it's not safe for her to be discharged.

yes, I have spoken to the nursing staff each time dsis is admitted.

I have offered to bring them to me and I will look after/nurse them both, but her husband won't come.i have just rang the hospital and they are treating her just now, and asked me to ring in half an hour.
at least she hasn't been discharged yet.

She will not be discharged from itu straight to home- in my 10 year career I've only seen this happen twice, both times young fit adults who'd had a lucky escape!

Try social services again, but if your ds is of sound mind and refuses care there really is nothing they can do. Could you offer her a bed to re cooperate and hopefully talk to her in a neutral environment? X

Will she come to you even if he wont?

that might be the best option at the moment.

I think you need to underline to the hospital SS that BIL is irresponsible/abusive and is putting her at risk.

I'm not sure what 'sometimes.. isn't aware of his surroundings' implies in this case. Do you mean he's not always with it, or that he doesn't care about mess?

If the former and he has some kind of dementia, then, harsh as it may sound, it may be possible to have him sectioned. If he is a risk to himself or others he can be detained under the mental health act and assessed.

Your sister's needs could be assessed independently.

it has just been confirmed by the hospital that my dsis definitely won't be discharged any time soon.
I have explained yet again to the nursing staff the home conditions, and was told again that it will be discussed on Monday or some time next week.

she definitely wouldn't come to me, as she would feel guilty leaving him alone at his age and condition.
I mean..he is not always with it...forgetful and sometimes forgets what he is saying.
he keeps asking what is wrong with her, and was surprised tonight, the first time in 15 years to find/see she has a stoma bag.
just got to wait until Monday now, as once again I have informed them of every possible problem with her being discharged.

Regardless of age and infirmity your bil sounds like an abusive vile man. I hope your sister can escape him

If he keeps asking what's wrong with her - I assume he knows? Or has known in the past - he forgets? Is that what you're saying?

And are you saying she's had a stoma bag for 15 years and he was surprised to see she had one tonight?

If the answers to the above questions are yes, he may well have dementia. Has he ever been assessed?

I suggest you make contact with the hospital's social work department - there may possibly be a sw on duty tomorrow morning but, if not, give them call first thing on Monday to a) appraise them of your dsis's home conditions and also to ensure that someone from their office will be in attendance at the meeting.

In addition, call your dsis's local authority Social Services department and ask to speak to the Adult Services Mental Health team re your bil's apparent senile dementia - from what you've said it sounds as if his mental health is failing - and the adverse impact this is having on the care he gives your dsis when she's at home.

It could be that a care package can be put in place which will meet both of their needs. However, given that your dsis's problems are physical and your bil's are mental, it's unlikely that their needs can be met in any one residential unit such as a care home and they may have to live separately at some point.

You've mentioned that on the last occasion your dsis was discharged from hospital she was offered palliative care. Was this in connection with a hospice or MacMillan nurses? If your dsis has had contact with MacMillan I would suggest you also appraise that organisation of what is and has been going on.

Do they have dc and, if so, can they step in to get their dps the care they need?

This is a miserable, but sadly not uncommon, situation and I sincerely hope that all of the agencies involved work together to improve your dsis's quality of life in her final years.

As well as the excellent advice above, my family have found age concern a great source of help and support.

It sounds like he now has dementia as well as having been vile & controlling in the past.

Please call social services, his GP etc. to say you believe he has dementia as he has no comprehension of how ill your dsis is.

I spoke to the hospital again last night, identifying all the issues regarding the care, or total lack of it each time my dsis goes home. they have no children, are totally alone.
he rang me so confused last night, saying he keeps getting phone calls, when I asked him what did they say, he kept repeating they were "fashionable". and was so confused.
the hospital told me dsis is too poorly to be leaving, and that Monday they will raise all my concerns.
but this has been said numerous times.
I am afraid that they will be separated which would be traumatic for them both, but unless a total care package is put in place, I can't see how dsis can be supported.

In my past experience the hospital social workers seem to have more to offer than local authority, you could ask to speak to them. Also the hospital will have Patient Liaison peopl (PALS) they can help get your concerns across if you feel the hospital staff are not clear about all the issues/needing a care package. Good luck to you and hope you get sorted x

There is nothing you can do until Monday. Are you planning on being there for the case review? If so have in your mind, or written down bullets of what you want to say. It sounds like the minimum they need is some home care, cleaner, meals etc they might be separated. Don't get upset or angry until you know what the plan is.

The hospital have told you that they are not discharging her so please try to relax a bit in the knowledge that right now she is in the best place.

I have just had a phone call from my sister.
on one hand I am relieved that she will definitely be in hospital for the foreseeable future..she told me...also after that when she is finally stabilised..bowel cancer, one underperforming kidney, swollen legs, unable to stand/walk......she will be transferred to another London hospital for further treatment.

we are talking months.

she is desperately stressed about her husband, mid 80's becoming more fragile by the day.(he has no one to care for him, simply totally alone on the 11 th floor flat in London , not eating etc, completely isolated.) he rings me daily, often confused and agitated.

that worry is causing her more physical worry/harm.
I don't know what I can do.

I suggested bringing him to say with me for a while.
or me going to stay with him for a while.
he refuses all offers of help.

neither one of us know what to do now we know my sister will be hospitalised for so long.

things are being divulged now by my sister how he has controlled her over the years, no tv, no family contact, only her at his beck and call.
it's quite a pitiful situation, any suggestions please.
he is not a danger to anyone, maybe to himself as he isn't eating/drinking.
I attempt to persuade him to eat, but he says he had an ice cream.
refuses to speak to a social worker or any help agency re food/or general care for himself, just says my sister should be home now she is in a ward and out of ITU