wish i had support now....

[iamsufferingnow]

serious matters are spinning round my head.
dh had minor heart attack in january.no cause was found,
he is fully recovered, as if it never happened.
then he had a suspicious spot, a biopsy revealed nothing.
last year he had whiplash from a fall.
Just to paint a picture of the last few months.
I supported him totally, emotionally and physically, in a calm and kind/caring way.
Even though it was pretty stressful for me, the constant appointments, hospitals and surgeries, I kept our spirits up as best I could.
every moment of the day/weeks/months were focused on dh.
now...here is the issue for me.

during this time ,my sister (76yrs)is terminally ill in hospital which takes me three hours to get there by public transport.

she is alone, no family/children/ and her husband is in care with dementia.
I go alone to visit her as often as I can, I have an appointment Monday to discuss what can be done next for my brave uncomplaining sibling.
it is immensely distressing when I arrive and equally when I have to leave her.
she is a tiny traumatised body in her bed.

BUT, this is the awful situation for me.

my dh, is totally disinterested in this situation.it is me, me, me as far as he is concerned.
he refuses to accompany me on the visits, I really need emotional support, the sort of support I have freely given when he needed it.
i am fearful travelling through a big city alone at night...I am an oap myself.
last night when I was talking to the hospital on my sisters behalf, my "dh" became annoyed as he had a face as black as thunder, and moaned that he missed his tv programme...the tv was on though...he was just pissed of because I was on the phone.
when I reminded him how I had always been there for him, he shouted "you should be anyway".
needless to say the argument escalated and I went to bed at 9pm, just to get away from this selfish self centred bastard.
silence today, I just don't know what to do next.

I'm a hospital consultant for elderly people.

It is true to say I'm afraid that a person with mental capacity can decide to go home even where this seems to others very unsuitable. They are allowed to make an unwise decision and take risks as we all are. The question would then arise though as to whether she does have capacity and is aware of the risks.

Hospital wards are fraught with communication problems because of shift work and lack of continuity of care. Please put your concerns in writing to the consultant in charge of her care. I think it's the only way to be sure they are documented and taken into account.

As to her husband if he has dementia it's even more likely that he lacks capacity . It's not clear if he was placed on a temporary or permanent basis but it seems likely that it will be deemed in his best interests to stay in care if the home is unsuitable and your sister can't care for him. I would let sleeping dogs lie on that one.

Have you asked your sister about going to a hospice or nursing home near you? Is that what she wants? Hospice is very limited availability usually now and there needs to be a very short prognosis eg 2 weeks for most of them. Nursing home is more realistic. If she is largely bed bound and needs frequent turning then it is likely she would need a nursing placement. If she agrees to it then funding will need to be sorted out. Discharge planning will do this.

Hospitals don't usually like to take any risks and are usually all for putting people in care homes. They often have 'step down' or 'intermediate care' beds that they discharge to in order to stop bed blocking so it is quite an easy option for them. Is your sister telling them very strongly that she wants to go home as that seems the only reason they would be going down that line?

Op, the people you need to make contact with are the social services dept. attached to the hospital.
Phone the ward and ask for the name of the social worker dealing with your sister.
If they tell you she hasn't got one, then ask why not given that she clearly has a need for on-going support.
Tell them that they must refer her immediately or you will phone social services yourself.
You can make contact with SOC services via the hospital switchboard.
Tell her social worker what her home situation is, including the demented, bullying husband who had to be taken into care as he was unable to manage without your sister there.
From your description, it sounds as if she too needs some form of residential care, probably nursing home care.
Hospice care can be difficult to access unless end of life is fairly imminent or there is a desperate need for symptom control.
Just one last thing to bear in mind, is your sister telling the ward staff that she wants to go home?
Sometimes, what the patient wants and what is possible are not one and the same thing?
Has alternative care been discussed with her but she has declined?
That too often happens as, naturally enough, given the choice, most people would rather be at home than in hospital. Whether they are able to manage at home, is another thing entirely, but if she is of sound mind, she is/will be entitled to make her own decisions about her future care.
This is very worrying for you and I wish you all the best in getting it sorted.
My last suggestion would be to request an appointment to speak to her Consultant and then put him in the picture about her home life and tell him your concerns at the prospect of her being discharged home.
Do you know who she has listed as her next of kin - is it you or her husband?

Apologies OP.
I posted all that above and have just realised that I had missed the 2 most recent pages of your thread where you had already been advised by other posters most/all of what I suggested.

just an update for you lovely people.
I have just spoken to my sister, she is adamant she wants to go home.

i understand this, but the practicalities are enormous.

I said I would spend time to "settle her in" which she welcomed immediately.

but I slowly discussed the practicalities of it, one by one.

who would turn her every 2 hours?
the pressure sore is too deep now.

also the multitude of other issues.

i mentioned the macmillan nurses, but she simply said no.

there was no mention of the necessary access visit, but i think she is closing her mind to the basic needs she has.

she said she can have a flask during the day, and so on.
she takes st marks drinks, but hates them and will stop when she is home.

she was desperately tired and couldn't speak for long.
she asked for wipes as she can't bathe/shower at home.

so, a day at a time.
i would be immensely surprised if she achieved this.
she said she would be happy to come to me, but felt that it would prevent her "getting better!
good job she couldn't see the tears in my eyes.

Poor woman. She's so very far from being able to even cope at home that she's clearly not thinking straight. Gawd knows what she's saying to the medical and social professionals involved in her case. Another poster might have a better idea of where to go in terms of overriding her apparent wishes - which I think has now to be done.

How are you coping with all of this? (And the home situation as well.)

you hit the nail on the head there!gawd knows whats she's saying, that is true.
when I was there Monday, after I might add the ot said my sister was quite mobile, I became very angry, and told her that sister can't even get out of bed unaided, whereupon the ot said, oh sorry I was looking at last years history, for god's sake.

anyway, also when I was there Monday, the ot said the physio had recorded she had walked 15mtrs, BUT my sister was lying in bed and when I asked her if she had walked she said she was too exhausted and couldn't get as far as the door.

but, as of this moment, sister is planning on a discharge, when I don't know yet, still waiting to see if/when the access visit is to take place, as promised/assured me would be done.
I won't hold my breath.

I think my sister just wants to get out of the geriatric ward she is in.
AND, the pressure sore still hasn't healed after 2 months in hospital, despite having regular treatment.
so how will she manage at home??????
her medical needs are high,stoma, incontinence, one kidney, not performing, with inconclusive bopsy, frequently on drips for hydration, so many different meds, she rarely eats.all skin and bone.

I feel slightly easier though, as when/if the day of discharge comes, I have told her that I will go and stay to "settle her in".

I just think she has just had enough now.

i'm positive that she will only be home a short while before she is re admitted, though could be in even worse shape than she is now.
I feel helpless for my darling sister, but if the thought of going home, however squalid it may be, is what is keeping her going for now, so be it.

I suspect that your presence and care is almost allowing her to start coming to terms with the end of her life - now that she has a 'strong' person to lean into and to take some of the burden - and she wants to go back to familiar things in her last while. Many people do.

This might be an interesting read for you.

It's a terrible burden on you, though, especially in your home situation, mustering the continual smiling face and strength. Are you able to do it do you think? (And I really would call on some support such as through Age UK: you don't need to end up exhausted and ill yourself.)

thank you cozietoes, your messages have been a great support for me, and everyone else too, thank you all.

I wondered that, maybe now she is coming to terms with the inevitable outcome.

these last few months are the only time that I have freely been "allowed" to physically see her, through the decades...due of course to the husband.

although we would have snatched "meetings" during her lunch hour at work, and hidden phone calls, but now he can't stop it from where he is.

from what I am hearing from sister now, she has spent all that time dealing with his mental health issues alone.
she wouldn't have been alone, but he was/is so dominant and controlling that she "thought he knew best" so to speak.

As far as I am concerned, if I feel weakened I have good friends to call upon, in fact for the last couple of days, I have told them I am incommunicado as I didn't want to talk to anyone, but am okay again now.

It's entirely natural for hospital patients to want to go home but, given the circumstances, it clearly isn't advisable for your dsis to return to her home without significant changes having been made to her accomodation and a care package containing a high level of nursing care (which, ime, is beyond the capacity of most local authorities to provide let alone co-ordinate/supervise) being put in place.

Given what you have said about your dsis's physical health, the worst case scenario is that she is discharged from hospital to her home, after which event her dh is similarly discharged from his current care home and the two of them are effectively left to fend for themselves with a basic care package consisting of morning, midday, and evening visits from care workers and sporadic visits from community nurses - all of whom in the absence of a court order can only gain access to the home if the occupant(s) allow them to enter and all of whom can only perform those services which the client(s) allow.

Unfortunately, as things stand at the present time, this would seem to be what has been/is being planned for your dsis and her h and as she has full mental capacity you cannot override her wishes, nor will you be allowed to do so by her care providers.

If, as seems to be the case, you have decided not to draw further attention to the inadvisability of your dsis being returned to her home and have determined that you will stay there with her until she is 'settled', imo it is imperative for you to attend the access visit so that you can a) assess your dsis's living conditions for yourself and b) become cognisant of what improvements/additions will need to be put in place such as pressure relieving mattress, high seated chair and pressure relieving cushion/ring, commode/raised toilet seat, zimmerframe, grab rails, new washing machine etc before your dsis's return.

From what you have said today of her medical issues, it seems that your dsis is not terminally ill in the most commonly understood sense of the term, nevertheless, I agree with your expectation that she will require further in-patient care within a short time of discharge.

It occurs to me that while whatever necessary works are being carried out to her flat, your dsis could be discharged to your home and it could be put to her that this would be preferable to her being placed in a step down or intermediate facility as she could convalesce in your company and the sea air of the south coast and regain some strength before returning to London.

Your local authority will be able to provide a pressure relieving mattress and other equipment if required and should your dh demur at this proposal I would suggest that you use two words beginning with f and o give him an assurance that unless he shapes up, you'll be taking steps to ship him out and you won't be going to any such lengths to ensure his comfort should he develop a chronic medical condition.

If your dsis should require a further admission to hospital while in your care she will be taken to an establishment near you which will, at least, enable you to visit her daily or more frequently than you've been able to undertake to date.

While I'm tempted to agree with mamadoc that you should let sleeping dogs lie in respect of your dsis's h, I suspect the plan is to return him as soon as she's at home, or shortly thereafter, and as it's not unkown for such returns to made without prior notification he could fetch up on her doorstep at any time.

I therefore suggest that you make some discreet enquiry via your dsis's hospital social worker as to his welfare and reiterate that his dw is unable to care for him, and vice versa, should there be any intention of returning him to his home.

I also suggest that you cc any letters you write to consultants, social work/services etc, to all of the other individuals/bodies involved in your dsis's care and also to your dsis's and your own MPs.

well, another day of battle for me.

*mamadoc, you are right, communication issues are enormous.
I have spoken to the ot the discharge co ordinator, doctorstaff nurse * ward sister, and so on.yet still not receiving the replies/advice of straightforward answers necessary.

*wingedharpy, true again, first thing today with my sisters permission (given last night)I aim to find/talk to her social worker. she said she doesn't know if she has one, or if she has what name, so I will get ready for the fight.

*godessofsmall things, it's too late for me to accompany the ot for the access visit, as it has been done.
after my "strong" conversation with the ot on Tuesday, rapidly a visit was done Wednesday and the home was deemed fit for sister to return to???????

also I believe you are totally correct in the plans are in the pipeline for sisters husband to return home from care, once she is re established in the home.(the massive issue with that is that he refuses access to anyone, last time when poor sister couldn't access food,...because she couldn't walk.... he refused to allow me to send in cooked meals from a specialist company)

dear sister told me last night that she will be discharged sometime next week.
*last time she was discharged she was given a pressure relieving mattress...all good there...except that she was unable to get out/in as it was too high, it doesn't move. and with her damaged feet couldn't manage.
so, how will it be any different this time.
last time I told her to tell the nurse who came, and something was promised to change it. needless to say nothing happened.
but back to today.

*I must find who/if social worker is, as a unforeseen issue reared it's head last night.
sister has always worked until retirement, husband "retired" at about 40, so she was the breadwinner...okay with that....well not really but that was how it was...

but he insisted that her salary was put into a joint account, which may be taken (legitimately) for his present needs at the care home,, leaving her penniless.
god knows how much it is costing weekly????
apparently when he was put into care after being found wandering a few weeks ago, the home had to buy him clothes and personal needs.
he wouldn't "allow" her to obtain a debit/credit card, and could only withdraw cash directly via a bank.

How are things today, iam? Are you still reading?

I think you need some irl help for you and your sister. I think there may be agencies who can help you with the house, I think you need to talk very clearly to someone. Obviously the staff at the hospital aren't tuning into you at all if they are talking about your sister going home to her husband.

Whereabouts are you?

I can't think how so many awful men get such nice wives, it happens all the time. I really feel for you both.

so, today....I must

• no doubt make numerous phone calls to attempt to find the social worker for sister, if she has one, she wants to discuss this financial issue as well.

*speak to the discharge co ordinator again to find out their plans.
what about the bed?she couldn't get out/in before this admittance, how can she now???????????????
*ask the co ordinator to go into the ward and ask sister to prove she can get out/in bed unaided.

*speak to the ot who did the access visit as apparently she said sister must not cook as she has mobility issues.
haha, but she can be discharged home alone!!

*simple things such as before being admitted via a&e, sister said the light bulbs had gone and she had to stay in bed until daybreak.
*sister asked me for wipes as she can't bath/shower, as has happened in the past. for christs's sake, she has incontinence stomas etc so, how the f..k can her bed be hygienic ? infection will love it.

I am totally against my sister being discharged home, but understand her desire to go , and will assist in any way possible for her to achieve her wish/need.

*but, it takes me 4 hours roughly to get to her, so if I leave at 9am, arrive at about 1pm, go to the hospital, collect her keys (this was arranged last night)go to the flat by 1.30.
spend the next 5 hours cleaning and preparing for sisters return, go back to the hospital, that's about 7ish, home again by 11ish.
I will be exhausted, but it needs to be done.

last night sister sadly and quietly said, I just want to sit in my chair at home.

so,
*if she had an accessible bed,
*meals on wheels,
*constant medical care,
*carers regularly through the day (taking washing to the launderette as she has no washing machine, husband refused )
*a phone by her bedside which she hasn't...
*food and necessity shopping
and all this 7 days a week, it might work for a while.

writing this helps to organise my morning,

You do really, really need to put your concerns in writing to consultant, discharge planners and social worker.

Ask

1. Has a capacity assessment been done on your sister and on her husband

1. How will her needs be met at home including pressure care, nutrition, personal care, medication, toileting

State

1. That your sister is a vulnerable adult and that you wish to raise a SOVA concern (safeguarding of vulnerable adults) about severe self neglect and financial abuse and denial of access to care by the husband. This is a magic phrase. They cannot discharge her until the SOVA investigation is completed.

Re: finances. Your sister can make an LPA in your favour so you can manage her finances but it will take a while. You'd need to see a solicitor (also make a will?)

Social services can take into account all the husband's income eg pensions and HALF the money in joint a/c but NOT all of it. He would need to have more than 23,000 of his own money to be required to fund all his care.

Social services will usually fund up to four times a day care at home. More than that is uneconomical compared to funding a care home. The things you are asking for can be provided so her wish may be possible.

Please make it clear that you will not be doing it or otherwise they may assume you will.

I have a list of people to contact this morning as above.
i'm not optimistic that I will achieve much quickly, but I am prepared for battle.
I accept sisters desire to return home, but full preparations must be made.
she seems to think the middle of next week will be discharge day.
I can't see suitable arrangements being put in place by then.
for gods sake, she has been in the royal free since june, still not had her hair washed...it's so manky....she said last night.
her toe nails....she wears special boots.....are growing sideways , she is distraught....it has been "put in the book" was the refrain when I discussed it.

thank you mamadoc,
all advice readily accepted. do you mean that social services will fund the carers and sisters daily needs?
also, we panicked at the thought that funding from husbands care could simply be from the joint account, whatever the cost, leaving sister penniless.
it is impossible unfortunately for me to physically be available , not only am I so far away, but I am not a spring chicken myself,
you mention a capacity assessment?
well the ot told me, mistakenly Monday that my sister is mobile, then confessed that she hadn't seen her, and when I exploded admitted that she was reading sister's notes from last year...for gods sake, somebody wake up, do your job.

Nurses won't usually cut toe nails as a rule especially not ones that bad it will need a chiropodist and that's who it's in the book for. They likely only come infrequently. On my ward we allow families to pay privately for a chiropodist and a hairdresser who visit the ward (we have a list of ones who will). Maybe ask if that's possible.

A lot of hospitals now have a step down or intermediate care team (ours is called reablement) who can start very quickly to enable discharge so possibly this is what they intend. They are for 6 weeks and are free and then hand over to social services (which is means tested)

If they have less than 23,000 income and savings EACH social services will fund the care but not daily living expenses. That's why they allow you to keep some money for those. She won't be penniless.

By capacity assessment I meant her mental capacity to make decisions about going home.

She should also have a physio assessment of her mobility, OT assessment and nursing assessment. You could ask whether these have been done and what was the outcome.

*thank you mamadoc, I have written these questions down and will ask the discharge co ordinator when/if I manage to get through to her today.

• I asked if a private chiropodist could come to the ward, they looked surprised and said they didn't know!!!??????????? *my sister asked re hair washing, was told "i will see" then no one came back to her. she is very fragile and is afraid to press a point. when I say I will press the point sister is reluctant to agree. *at least my mind is at rest re the finances, I will tell sister first thing, she was so worried last night.

I suppose the fact that discharge is imminent, i'm afraid that I won't be able to prepare her home.

she asked me to dispose of old bed linen, stained etc, and buy new duvets sheets , a kettle, toaster, lamps as she has no bulbs, couldn't reach to replace them when they blew.

this is just a nightmare for me, but I wouldn't let her know that, I just say, look, you're not in a position to address these issues, somehow your needs will be met somehow.
then of course is the issue that being alone for so many hours, when she is weak, she may not eat or drink, particularly if she can't actually access food/water due to her immobility, probably would lead to her readmission, back to square one.
I am trying to be positive, but at least in hospital there is always someone around if she needs assistance.

Iam I remember your thread from before & was so sad.

This one has actually made me cry with frustration & rage for you. This is what my beloved NHS has come to.

I think you have taken all reasonable steps to try & get action the official way.

The staff are clearly overwhelmed/disorganised/understaffed and unable to offer the care your sister needs.

PLEASE ring the PALS and demand something is done, really get angry like you did before, its horrible you have to get like this but sometimes its the only way. You need support in arranging care for your sis.

PALS NHS at Royal Free Hospital

T: 020 7472 6446 – E: [email protected]

thank you floundering, I will also ring pals this morning, maybe they are the break we need for my dear sister.

I am sorry to hear that you are struggling

You are doing the very best you can for your sister - you cannot do any more than you are. Be kind to yourself.

Sending you a big hug

People always ask how the patient is, but people forget to ask how the carer is. You are under immense emotional pressure

If your sister goes home, everything must be put in place first !

You should be asked to attend a family meeting at the hospital where all departments are there eg doctors, social workers, before she is sent home or to a care home etc

If your sister is unable to go home, a "care home" place would need to be found & your sister may need to pay some if she has savings or assets.

Depending on your sisters savings, she may have to pay for some of her care if she goes home.

I believe this would include

A special pressure sore bed
Probably carers that come 3 times a day, morning, lunch & evening to do "body cleaning"
Seperate people to provide food
However there would be nobody to clean the clothes or sheets who would do this ?
Someone needs to pay the house bills, electric, tv, phone, council tax etc
Seperate nurse to change the dressings

take care

iam

I feel that you abolsutely have to get into her house and have a look at it as a first step. You're a bit at a disadvantage if one of the case workers has apparently been inside and deemed it OK - and you haven't been inside - so I'd be getting the keys and going yourself.

I agree with the other posters who have mentioned contacting local Social Services.
This is the number for Adult Assessment at Royal Free
020 7794 0500
And this is Camden's Vulnerable Adult team. 020 7974 4000

You're a wonderful sister.

I've just read this thread through and I'm just in shock at the conditions your sister is in.

She is very very lucky to have a sister as wonderful as you fighting her corner