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.

[iamsufferingnow]

CANT BELIEVE THIS.
rang the discharge co ordinator.
she said no access home visit has been done.i said there are issues that need to be addressed.
she very rudely said "what"
I replied that my sister has no light bulbs , couldn't reach to replace them, and is in the dark, the said that's not her problem. I should do it.
I worry that she may be discharged before the safety aspect is sorted out.
I said it was done yesterday and my sister was told she would be discharged next week.she said it hasn't been done, or she hadn't been told.

she was so patronising and rude, didn't really want to talk.
she said sister isn't going to be discharged anyway??????????
said there is a meeting at 12 today, I asked if they could call me as my sister asked me to speak to them as she couldn't take it in when they speak to her.
they said they are too busy to ring me, as they have sick patients to look after.
I said discharging a sick patient is important.
then she handed the phone to the sister, who again patronised me.
said again about the meeting. I asked her to let me know what was decided then, she said she is too busy I must ring back at three, virtually slung the phone down.

[cozietoesie]

Get the keys, get round to the flat and - if at all possible - take some pictures of conditions. (You don't need to tell your sister that last bit.) It's going to be a lot easier if you can actually say/show what sort of position she'll be in if she (and possibly he) go back there.

As we've acknowledged before, you have no idea what your sister miight have said to them to keep them away from it. (For all you know, she could have downplayed everything and actually told them that the flat was perfectly suited to disabled living.}

[cozietoesie]

PS - and then contact Age UK. You're doing quite amazingly well but you shouldn't have to deal with all of this on your own.

[iamsufferingnow]

just rang the social worker for elderly care.
a wonderful woman called precious answered the phone.
she was so kind and caring.
listened to what I had to say, and my concerns, and distress.
she was amazing.
so caring and helpful.
she said she will attend the meeting (for all the patients, not just my sister as I was rudely told earlier)and raise the relevant points.
and more than that....
SHE WILL RING ME BACK AND TELL ME WHAT IS HAPPENING.
what a reassuring person, so kind .
no arrogance or patronising as I experienced earlier from the ward.
proud of you precious.
my sister is lying there in bed, thinking she will be going home...who told her that yesterday?....when no plans have been made .
all we need is communication and respect.
medical staff have said they will ring me back, but don't.
I explained to them my sister doesn't quite take in when she is being told information, I asked them to inform me......BUT NOTHING, until precious comes alone.

[iamsufferingnow]

feeling a bit easier now after speaking to precious, she is really precious to me I can tell you.
after the many tears of frustration and distress from earlier, I can see a light at the end of the tunnel.
though precious did say that if sister needs turning every 2 hours, that will have to be discussed today.
she will also bring up the fact re toenails and hair washing or lack of it since june.

[cozietoesie]

That's great - but don't rely on one person in this, however good she seems. If the system is FUBAR'd one voice may not be enough and it may not be long enough either eg it's holiday season.

By the way - has your husband changed his tune on this? Is he giving you any support at all?

[iamsufferingnow]

you are right, re one person.....i'll wait until she rings with a full update of the planned events.

no, no change of tune, least I've got good friends ringing asking if I need to talk or anything.

so, going for a lovely walk on the beach in the sunshine, try to blow the sadness away for a short while. thank you all, you have been so so helpful and supportivexxxxxxxxxxxxx

[tunnockt3acake]

I wanted to add

If your sister is going home. The NHS should be able to provide her with a special bed. I dont know the official name for the type of bed. But it has a pump on it that pumps air into the mattress constantly in different places to help alleviate pressure sores. It is not a solid normal type of mattress.

If you sister goes home, she will need lots of clean sheets, towels, clothes to wear in bed eg night dress , flannel or sponge, toothbrush

I believe the care of her hands & feet should be arranged via her doctor. This would need to be qualified chiropodist to visit regularly (every 6 months ?) in hospital or at home.

It may be worth looking at the dry/powder shampoos that you can buy from Boots. But suggest testing a small section, incase of allergic reaction.

Ref your sisters house
When her husband was there your sister had some form of help
However, if she was bed bound she would have been unable to keep the house clean & tidy.
The husband probably "did his best" & did not want "outsiders in the house" which we can all probably sympathise with to a degree.
However there comes a time when we need to ask for help.
You would probably need some help to do the cleaning. I believe that there are companies that specialise called "deep cleaners".

Your sister may still think that her husband will be there to care for her at home. Which I believe is no longer the case. She may not understand the practical implications of going home on her own.

Good luck

[DelphiniumBlue]

Royal Free complaints. [email protected]

You need to complain in writing, and follow up in writing.

I have not read the whole thread, but please do not wait for the hospital to contact MacMillan, do it yourself.
Age Concern maight also be able to help.
Your local councillors or Mp can help too + send them a copy of your letter to zRoyal Free.

[iamsufferingnow]

yes, she has a special mattress, but not the base which allows her to move up and down, plus it is too high for her to get in/out of.
*I said I will buy all she needs re clothing etc.
*will keep on about hand and feet care for her.
*she said I can wash her hair when she comes home.
*that is the case for months and months she was bedbound and said the place is squalid and is ashamed of the state of it.
*her husband refused access for decades to anyone at all,even before health issues began, certain mh issues.
*yes, this is the time to ask for help,just have to wait to see the outcome of the discussion at midday.

my sister is fully aware that her husband is in care, but equally it worries me that as soon as she is back at home, he will be returned there.

despite being so very ill for so long, it was she who had to "look after him" than the other way round. this she has finally admitted since june.

yes, again, you are right, perhaps in her desperate need to leave the geriatric ward where she has been for so long, and has become weaker by the day, perhaps only by being at home will she really accept that she can't cope with living alone.

thank you all so much for your continued replies, they have helped me unbelievably.
just so sad, that at her age, and her illness, that there is so much confusion and lack of communication.
she is lying there believing that in just a few days time she will be back at home and all will be well , as yesterday she was told she will definitely be going home..

But today, I have been told(well patronised) by three people that no decision has ever been made.
so who gave her the misinformation yesterday?
in the words of the who song "hope I die before I get old"
(well i'm closer to that age now, but still got some fight and strength left)

[goddessofsmallthings]

Is Precious based at the hospital? It's to be hoped she lives up to her name but, as said above, please don't rely on her to pull all of the rabbits out of the hat.

When do you plan to visit your dsis again and collect the keys to her flat? Be sure to take a camera with you as I very much doubt that the OT's opinion will accord with yours - don't rush your inspection and be sure to make a full inventory of available bed linen, towels etc and clothing (particularly nightwear/underwear together with an estimate of what basic provisions (tea/coffee, bread, milk, soft drinks etc) will be needed on the date your dsis is returned to her home (if, in fact, she is)

If possible take a witness with you or perhaps you could ask Precious if she will meet you there?

[iamsufferingnow]

macmillan hasn't even been mentioned at all, I suggested it to my sister but she said she didn't need them.
as far as complaints are concerned the social worker suggested that I could always complain through the official channels.
yes, I could/can, but as of today, right now, I simply want resolve and
closure on my sisters future.

I want the patronising arrogant so called "professionals" to communicate with me, and others families, regarding a loved one.

the doctor I spoke to Monday, a very nice woman, didn't have the faintest idea that sister had been told she was being discharged.

the discharge co ordinator was unhelpful and arrogant, and patronising.
even saying that she was the only co ordinator, when I said I had spoken to someone else Monday.
saying I couldn't have spoken to anyone else, yet I have the name of the person I spoke to it was ri....a. explain that please.
the ward sister who she passed the phone to, was uncaring, cold and just wanted me off the phone.
even refusing to contact me to tell me the result of the meeting at 12, saying she has sick patients to look after.
sorry, but what the f..k is my sister????????????
i'm going out now before I explode with frustration and despair for my dearest sister.

[iamsufferingnow]

yes, precious is based at the hospital. I am happy to inspect with precious
,
I will do as much as I possibly can for my sister i think I will go next Monday, it is making it an even longer journey with operation stack in place again, it could take perhaps 5 hours even to get there.
last week I was stuck in stack on the way home, which is exhausting in itself.
so, at least it is doubtful that sister will be discharged within the next few days.

[goddessofsmallthings]

her husband refused access for decades to anyone at all,even before health issues began, certain mh issues

If he is returned home he will do exactly the same again and, ime, it could take days, if not weeks, before carers/community nurses etc gain to your dsis who may not have been receiving/taking her medication during the interm.

Your dsis's situation is by no means unique and the inadequacies of hospital and community care for the elderly is, imo, a national disgrace.

[iamsufferingnow]

that is my total concern goddess,

a national disgrace indeed.

money wasted from massive nhs budgets, the corruption at the highest level in government, and so on.

if sister is discharged home, I will demand confirmation that her care is constant, or not only will feathers fly, but I will be flying too.
hell hath no fury that a beloved sister neglected!

[goddessofsmallthings]

so, at least it is doubtful that sister will be discharged within the next few days

I pray that will be the case, but there have been many instances of peremtory discharge of geriatric patients resulting in them being returned to their homes at all hours of the day and night without relatives having been informed or any provision made for their ongoing care.

I don't say this to alarm you but, given the manner in which you've been spoken to today by hospital staff, you're best advised to hope for the best and expect the worst.

Btw, when you visit her flat do check that the phone is working as it may have been cut off if the bill has not been paid - I would expect there to be stacks of post/junk mail awaiting attention and it could be that there are outstanding bills from service providers in the pile.

[cozietoesie]

I would just mention two further points because I know the meeting will be held soon and hopefully, something positive might come out of it.

I wouldn't rely on much (if anything) that your sister has said. To anyone. She's spent umpty years being conditioned to keep people away and now she's very ill, probably on strongish meds (?) and in a strange place without her husband. I think it would be a miracle if any of us could retain much rationality in those circumstances. You have her interests at heart so rely on your own observations, parrticularly after getting into that flat.

Also - and while I'm prepared to believe much about the NHS's ill-treatment of people having had friends at that hospital - people and organisations tend to make decisions fairly quickly (and usually on inadequate information) and then spend inordinate amounts of time defending those decisions against all-comers. Sometimes a new person coming to the table can change a view, or a greater power such as a lawyer can change it for them, but the way to go is often to let them think they're winning something. (Or as Sun Tzu put it 'provide your enemy with a golden road of retreat' - it sounds better coming from him, eh?) You don't want to come across as the over-anxious sister trying to bully staff on behalf of a 'nice woman who is perfectly happy to go home'. (I know you're not but I'm just thinking of how things might be portrayed.)

[Lemonylemon]

OP: Before your sister is discharged, please ask that she sees an occupational therapist. The OT will check whether your sister is fit to be discharged. She may be "medically" fit to go home, but not "physically" fit to go home. The OT can co-ordinate with your sister's local authority to get a care package organised. It may just be a carer coming in first thing in the morning to help wash and dress your sister and get her some breakfast, or it may be something more involved.

[iamsufferingnow]

thank you again.
yes, there has been probably 3/4/5/ times recently when an application for rehabilitation as been applied for, but each time rejected...fair enough...the last time was due to the fact that she couldn't "sit in a chair for 6 hours"...fair enough if that is the criteria.

BUT,each time I have spoken to nursing staff, I haven't been given/offered any possible alternative future possible solution.
each time sister has her hopes up, then dashed again, without explanation.
Monday I asked the doctor in charge what other options there were/are.
her reply was a shrug of the shoulders and kind smile...I have a witness to this...
I understand what you mean by......an over anxious sister.....and on behalf of a nice women who is perfectly happy to go home....but, I actually haven't even mentioned to any staff medical or otherwise that my sister is happy to go home. it wasn't until yesterday, when she told me that she is going home in a few days ....who gave her that miss-information.....as today I was informed that no decision had been taken at all.

lemonylemon, thank you
"before sister is discharged ask to see the occupational therapist."

it was the therapist who on Tuesday told me quite clearly that sister is reasonably mobile , but when I disputed her opinion, she agreed that she had read notes from the previous year, for gods sake.
she did apologise for her mistake.

so, one of the issues is that different things are being told to different people, by different people.

all I want for my sisters peace of mind and clarity for her future care , is someone, anyone, to speak to me, and her of course exactly what is the way forward.
she told me numerous times that she doesn't "take it in" when things are discussed, but my god, if I can't make head or tail of what I am told how on earth can she.


communication is the absolute key.
also, she is afraid after hearing that patients have been shipped home, at odds hours of the night, without relatives being informed .
for god's sake you professionals,JUST COMMUNICATE

[iamsufferingnow]

i received a polite phone call just now, from the ot i had spoken to earlier in the week.

she informed me that my sister is recommended for in patient rehabilitation at another London hospital.

if that is refused she will be offered discharge home with a care package.

so, in a while i will ring my sister and find out how she feels.
hopefully another step has been taken now.

although, this is where we were before, but now there needs to be positive action.

[cozietoesie]

How are you doing yourself? You sound very tired.

[tunnockt3acake]

If your sister is going home. The NHS should be able to provide her with a special bed. I dont know the official name for the type of bed. But it has a pump on it that pumps air into the mattress constantly in different places to help alleviate pressure sores. It is not a solid normal type of mattress.

If you sister goes home, she will need lots of clean sheets, towels, clothes to wear in bed eg night dress , flannel or sponge, toothbrush

I believe the care of her hands & feet should be arranged via her doctor. This would need to be qualified chiropodist to visit regularly (every 6 months ?) in hospital or at home.

It may be worth looking at the dry/powder shampoos that you can buy from Boots. But suggest testing a small section, incase of allergic reaction.

Ref your sisters house
When her husband was there your sister had some form of help
However, if she was bed bound she would have been unable to keep the house clean & tidy.
The husband probably "did his best" & did not want "outsiders in the house" which we can all probably sympathise with to a degree.
However there comes a time when we need to ask for help.
You would probably need some help to do the cleaning. I believe that there are companies that specialise called "deep cleaners".

Your sister may still think that her husband will be there to care for her at home. Which I believe is no longer the case. She may not understand the practical implications of going home on her own.

Good luck

[tunnockt3acake]

Apologies for double posting

My PC has not been refreshing the content

Be kind to yourself

You are doing the very best you can for your sister, you are her positive advocate.

As I said your sister may not understand the all the practical & medical implications of her going home on her own. (her husband used to look after her)

The "higher powers" of NHS & Social Services may find that she is unable to return home - but this should be for her positive interests for her ongoing care if this is the choice that you make.

I sympathise that it is not easy when you yourself live a long distance away

[CarrotVan]

Do they mean that she has a place for in-patient rehab which she may turn down or that they have referred her for consideration for a place?

Usually discharge to rehab means that the professionals involved think she can be supported to meet specific targets in her health and mobility that would allow her to go home, self-sufficient or only requiring basic care.

I would strongly recommend requesting a SOVA investigation, a capacity assessment (is your sister capable of weighing the options in front of her, understanding the risks of each and reaching a decision even if it's one you and the professional's disagree with?)

I would also request a discharge case conference with all the lead professionals (doctor, nurses, OT, physio, social worker, care agency potentially) to which you and your sister should be invited to attend BEFORE she goes to any rehab place and again before she is discharged home.

And I would do all of this in writing. Whenever you speak to someone make some notes (date, time, name, summary of conversation, agreed actions). For things like the chiropodist ask when, specifically, she will be treated.

Also mention that she is distressed by the lack of care for her personal hygiene and not dealing with it shows a lack of care and respect for her as a person.

I would prepare a short document for your sister to sign along these lines:



To Whom it May Concern:

I hername (date of birth) of x address give permission for my sister yourname of y address to speak on my behalf to all health and social care professionals involved in my care.

In addition I give permission for yourname to speak to health and social care professionals on my behalf regarding the care and wellbeing of my husband hisname (date of birth) of x permanent address, currently residing in z care home.

Signed and dated

***

Then you can find out what's going on with the husband as well, under the guise of finding out for your sister to put her mind at rest.

Send copies for the ward file, PALS, the social work team at the hospital and in the local authority, the GP, and the care home where her husband is living

[iamsufferingnow]

you can't imagine how relieved i am feeling after all this.
my sister just rang to say that she is considering in patient care at another hospital.
this is the rehabilitation that has been applied for, then withdrawn numerous times recently. the occupational therapist told her, that she thinks the criteria of "being able to sit 6 hours in a chair" is unacceptable, and the application will be sent again.

unexpectedly, my sister was called for an xray, so she will ring me again to discuss the in patient rehabilitation option, agreeing that it could make her stronger.
so fingers crossed, she will not be discharged home, but onwards to rehabilitation and intense care, physio and such like.

so. i am just waiting to hear from my sister again.
hopefully it will be progress at last.

yes, i am tired now, but just told myself that i have broad shoulders and can stand up for my dear sister in her time of great need.