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.

well, at last the co ordinator has rung back.

she said she is going to arrange an access visit, with my sisters full permission, then further discussions can take place.

at least I know that sister will remain in hospital for the foreseeable future until we are satisfied that the most suitable outcome is agreed.

well, even though she has "agreed" to allow an access visit, i'll just wait and see if that happens.
sister wouldn't even allow the police access when they wanted to get some clothes for her husband when he was placed in emergency care.
so, at least I have direct communication with the relevant staff, which puts my mind at rest a little.

i think you have to think back to what she actually said. (She's 'going' to arange a visit.) You know your sister's intransigence on this matter and I'd lay some money on the co-ordinator having had a quick word with your sister where they agreed to 'sort it out' - at some ill-defined future point. (In other words, putting her off.)

We'll see but I'd continue - if you have the resolve - to make contact with other organisations such as Macmillan and hospices. She may not be being chucked out tomorrow but where she is isn't a good place for her in your view?

I take it your husband isn't offering any support in this?

co ordinator said she will arrange an access visit before any care package is arranged and discharge.
yes, I believe the "visit" won't happen, but I will chase it hourly to see what arrangements have been made.also I will ask the question where macmillan nurses come into the equation.

also, correct, after returning home at 110.30 last night, "dh" didn't mention a thing, how it went, how sister is .still hasn't today yet he has heard me speaking to the hospital this morning.( haha, yet his sister rang today and he spent ages talking to her re her sick husband, but won't even say my sister's name, no back story, he simply is self centred)
I am leaving that issue for now, got enough to think about.

Do you where your dsis's husband is being cared for and what arrangements have been made to facilitate him vistiing her?

Do you know where etc...!

His attitude seems to confirm all your thinking - but as I said backaways, I don't think that that's necessarily the immediate problem considering what you're facing.

Well done so far - and there are usually people here to talk to about things if you need to.

I have no idea where sisters husband is, she is vague about it.
yesterday she said she must think about herself now and go home, but I believe it's so he can come back for her to "look after "him

although having said that, she is talking about him, how he isolated her from friends/family and how she needed us,and there is a massive resentment from her.
I have been quite amazed how after all these years, she is opening up re the misery she has endured, alone, except for him for decades.
her husband was taken to the hospital a few weeks ago, but haven't heard anymore.
thank you all, it has helped no end talking about this.
but for now, I am doing my best for her.
she actually said thank you ,with tears in her eyes yesterday

If her husband has actually been admitted to care with dementia, I can't see any prospect of him returning given their situation and what it must have taken to get him into dementia care in the first place. Poor woman.

I remember your previous thread , get through this with your sister then look to your future without a similar man dragging you down

Keep on at the relevant people, I would also contact social services if you haven't already if indeed they do force release to the flat

yes, poor, poor sister. she has suffered so much over the years. I have always rung her throughout the decades, but never being "allowed" to visit her.
She said he repeatedly told her, it was "only the two of them". he stopped work at 40, whilst she supported them until she retired at 60, by then she had been diagnosed with bowel cancer.
My heart aches for her.

Just waiting to see if an "access visit" will actually happen. I also asked the nursing staff when/if macmillan nurses would be arranged, I was told the gp would organise that if it were warranted?

So, no arguments with him , particularly as each time, she was admitted to hospital, he would ring me many times a day as he couldn't cope.

Even to the point that about 6 years ago, she begged me to bring him to my home, so she could have a break from him, but as soon as he walked in the door, he demanded to be taken back, said he didn't like the smells of "new furnishings" in my house.
She cried, begging me to say anything to keep him here, but he refused, so he was taken back.
Another return drive of many hours.

That is why her "home" is in an appalling state, nothing new/replaced for decades.
Wouldn't even "allow" her cleaning agents with a perfume.
I sent her a nightdress one Christmas, she confessed that she had washed it many times, but he could still smell it, so she had to throw it away.
she is so ashamed of it.
So, this despair is nothing new, only now she is so poorly that I couldn't bear to see her still suffering, either emotionally or physically.

So far, I have spoken to the main doctor in charge..yesterday...but given different answers to the one I received directly from the ward?.
Who incidentally promised to ring me back, but hasn't.

Also to the nurse who is caring for sister.

Also to the occupational therapist..the one who asked sister for her keys to do an access visit...which I demanded they do.

Also to ward sister, who promised to ring me back...but didn't.

Also, why did the physio say that sister had walked 15 mtrs, according to the occupational therapist, when we found sister in bed, totally drained who told us that she was too drained/dizzy/sick to walk.

Also why hasn't her hair been washed since june?

Also, why haven't her toenails been cut, sister is so distressed about the state of them....they are black.
Also, how did the pressure sore, stage 4 come from?

There has been gross neglect here. I am not pointing the finger at anyone, but somewhere along the line either triggers weren't picked up, or just.....who cares.

Aw Heck.

I'd still phone Macmillan and establish contact with them - on her behalf if nothing else. I'm not sure that this is the right contact page for you but they should be able to put you on the right lines if not.

Even a stage 4 pressure sore, which is a sore that has gone down to the bone, should have shown some sign of improvement after 2 months of hospital care.

Your dsis should be on a pressure relieving mattress and nursing staff should be repositioning her every 2 hours. In addition the sore should be being carefully monitored for any sign of infection.

You've mentioned that she's spent 2 months in hospital issue gowns because she didn't want dirty washing by her bed. How many times a week do you visit her and does she not have a bedside locker where clean nightdresses can be kept and where a bag of dirty washing can be tucked away until you collect, launder, and return it on your next visit?

Does she have her own underwear, slippers, a dressing gown, and sufficient money to buy a newspaper or snack from the trolley that does the daily round of the wards? Does she have access to a tv and/or radio?

How often have you drawn the nursing staff's attention to the state of your dsis's finger and toenails and the fact that her hair has not been washed? Her condition suggests that she may not have had a bath or shower since she was admitted. Is she able to feed herself and have you checked her chart to ascertain her fluid intake?

You've also mentioned that your dsis is terminally ill. Have you been given a prognosis or told how long she may have left to live? What medication is she on?

I distinctly remember your previous thread in which you were specifically advised to make contact with the hospital's social work department and with your dsis's local authority adult services department. Did you make contact with these bodies or have you simply continued to address your concerns to whatever staff have been on duty on the ward at the time(s) of your visits?

As I understand it, your dsis's rented flat is a council/social housing property and the relevant housing office should be told of the changed circumstances as it may be that the rent has been unpaid since she/her dh have been 'in care' so to speak.

Your dsis will not receive good end of life care while she remains in hospital, nor is it appropriate or acceptable for her to be returned to her home.

It seems to me that the best plan would be for her to be discharged from the Royal Free and transferred to a hospice or nursing care facility near your home where you can visit her daily and stay overnight when/if it's necessary for you to do so.

Getting proper care and treatment for your dsis trumps every other consideration and I'd be happy to assist you in kicking arse concentrating bureaucratic minds on the necessity of engaging in joined up thinking in order to give her the best possible outcome at this late stage of her life.

Time to put it in wring and send it to everyone!

I remember back to when occupational health (have you spoken to them?) tried so say my DFIL was fit to return home. I was apologetic and followed her out the home whilst DH and DSIL were dumbstruck.

At the time it was undiagnosed dementia and he'd assured her his father and wide would look after him. They'd been dead for 10 years. She was shocked but said he had the right to go home whether I approved of his living conditions or not, he was a hoarder. I informed her that she had no way of knowing he could cope at home as she hadn't seen his house and that I would put it in writing that I would hold her personally responsible for his welfare.

She changed her tune, came out personally the next morning (a Saturday) and didn't even get in the house before saying it was unsuitable. I told her to go in anyway as I had visions of her suddenly deciding he could do steps later and she needed to see the full extent of the problem.

I was firm and not rise and made it clear I had their names and would hold these people to account.

thank you for your replies cozietoes, I have contacted the macmillan community.

the pressure sore, is unhealed, my sister is turned every 2 hours....that's my concern if she returns home, who will do it day and night?

the sore has received regular dressings.
*I said I would take/wash nightdresses for my sister but she said it is easier to use hospital issues....also that she is ashamed of her own garments.
*I go up at least weekly...it is a 7/8 hour round trip for me.
she doesn't have slippers...due to the special boots she has to wear re the condition of her feet.
*she doesn't want a dressing gown as she said she is always in bed, except the occasional physiotherapist walk.
*she does have money/access to tv and radio.
sister has bed baths, yet the fingernails/hair/nails appear to have been overlooked. I attempted to cut them yesterday, but the calcioum tablets made them hard as rock. I informed her nurse, who "put it in the book" for arrangements to be made.
*I did speak to a social worker, who I thought was my sisters, but it appears that it actually was her husbands.
*I have begged the hospital, numerous times including her main doctor that my sister could be transferred locally, or even to my home.but the reply was that if my sister wants to go home , it's up to her.
*I replied that it is a duty of care, yet still they are saying she can go home.
*yes, I had a "strong" conversation with occupational health today, and insisted they make an access visit, so they can see for themselves what my sister would be returning to.
in fact I demanded it.they agreed it would be done, if my sister gives them the keys.
just waiting to hear.

Oh love my heart goes out to you and your sister, you've both been through so much with selfish, unreasonable men. I don't have any advice to offer, but please keep posting here, we are thinking of you and sending you strength and support during this difficult time. to you and your sister.

Bed baths? O dear god.. or rather, is there one when it comes to geriatric care?

By 'main doctor' do you mean the consultant or have you been talking to the doctor who's most usually present on the ward which would be the house officer?

the doctor I spoke to yesterday, who gave me totally different information ...was the one who the staff nurse I spoke to sunday, said I should speak to regarding my concerns.my sister said there are a number of different teams who care for her.

sorry, what do you mean by bed baths?is there one when it comes to geriatric care?
I don't understand you meaning.

I suspect that goddess was despairing at the notion of there being a benevolent Deity when it came to geriatric care. (She can doubtless explain if she returns to the thread.)

Are you back home at the moment? I suppose it's too much to hope that supper has been prepared for you - but don't forget to eat. It's surprisingly easy to do in difficult situations where you're on the go.

Macmillan liaise with the hospital on your sister's behalf - that's what they're there for.

I would contact eg Help the Aged, Age Concern. I can't link but if someone can? These orgs speciailise in situations such as your sister's - and yours.

It's easy for me to say but imo your husband comes bottom of the pile and, if at all possible, get rid. To that end, can you contact women's aid on your behalf (and possibly your sister's behalf at some stage) . it's hard to get through during the day 0808 2000 247 but you could email them and they will give you a support worker to fight on your behalf and sort out your accommodation away from your revolting husband. When I used their services I met a number of pensioners who had left their vile husbands after years of misery - you are not alone.

Help the aged, age concern will probably access women's aid on your behalf. You are indeed exhausted and need others to run this race for and with you.

My dear, I am so sorry you are facing these awful circumstances. Your husband is a dead weight. He knows nothing about love, only me, me, me. He doesn't recognise the love you and your sister have. You have friends who love you - use them now. Ditch your husband, stay with them?

Here you go.

Age UK

(They've merged at national level.)

Cozie is correct; 'twas indeed a rhetorical queston born out of despair that the god of geriatric medicine appears on the wards even less than the consultants.

Ambulant patients can get themselves to and from the bathroom facilities but the frail elderly need nursing staff to support them, operate the hoist, and be in attendance while they bathe. What used to be done as a matter of course has been abandoned, much like many of the patients occupying beds in geriatric wards who, for one reason or another, rarely receive visits from relatives and are left to the tender mercies of an ever changing and often seemingly indifferent nursing staff in the interim.

My concern is that if you've been speaking to the house officer it's probable that the postholder will be moving on in a few days time when a new incumbent will succeed them. As it's often the case that information goes astray during these bi-annual changeovers, you should be prepared to repeat all that you have told 'the doctor' about your dsis's circumstances.

I again suggest that you make contact with the hospital social worker(s) who cover the ward your dsis is on, explain the current situation, and arrange to meet one of them at her bedside so that your dsis can make her wishes known while you are there to support her and/or draw attention to any shortcomings between what she may want and what is practicable given the changed circumstances which have occurred since her admission.

With the best will in the world your dsis can't care for her dh and, as he does not have the mental capacity to care for her, there cannot be any question of her returning to her former home and unless pressure is brought to bear on the need for her discharge to a nursing home or hospice, this unsatisfactory situation could continue for some considerable time to come which will inevitably take its toll on you as well as your poor dsis.

I'm so sorry that you're having to deal with all of this.

Along with all the other suggestions, it could also be useful to contact PALS:

www.royalfree.nhs.uk/contact-us/patient-advice-and-liaison-service/

PALS teams do vary in how effective they are (or are allowed to be) but sometimes getting as many people involved can help - the more "noise", the better.

Has your sister named you as her next of kin? Although that isn't a legal thing as such, it is something that hospitals tend to take note of, in terms of discussing patient's health; otherwise, they might just be seeing you as a concerned relative and not involving you enough in their decisions.

I'm of a similar age as you, and looking back to my past, I can see something of how you and your DSis have ended up in your situations. But things are different now. When you feel ready, please contact Womens Aid; they will understand your home situation, and will support you in finding a better way to live your life.

Women's Aid phoneline is 24/7 but better to call at night, 7pm-7am, as lines too busy during the day. 0808 2000 247