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.

[MyRightFoot]

God bless you. You sound a lovely woman, focus on your sis for now. maybe you could speak to adult social services in your sisters area?

[iamsufferingnow]

"disgusting" and "nasty", these are the words that keep spinning round my head.
The words my "dh" spat at me after I had spent time on the phone Friday to the hospital trying to help my sister.

it's now sunday morning, and we haven't spoken at all.
he "carried on as normal", i.e. put the tv on in the evening, just sat there in silence, while inside I was shaking with anxiety.
I was going to ring my sister yesterday, but dreaded the "faces" and sighing I would get from him.
I know I sound like a coward, but I am mentally drained after so long.

I need to go to the hospital today but the thought of the 6 hour round trip exhausts me even more.
why can't people just be more sympathetic and supportive to others as I have always been.
It seems to me that as long as his needs are being met, he is okay, but his entire focus is on his wants and needs.
What about mine?

[DangerGrouse]

Where is your sister staying? I mean as in where in the country? I can look into support groups in that area for the both of you...
Also have you thought about telling your sister about your situation with your husband. How it would make it easier for you to stay at hers (after a clean) rather than the travel?
If she's so pleased to see you then explain that you will be able to see her more if you could stay at hers...
No one is considering your needs here are they?!

[iamsufferingnow]

my sister is in north London, I am on the south coast.
couldn't mention a word re husband, it would make her feel too bad for me.
her home is virtually unsuitable for habitation now, she says it's really bad.
the two of them have been there unaided for so long, she is so ashamed of it.
going to ring a friend this morning to see if she will take me there tomorrow.
I am so exhausted I couldn't drive safely myself

[Guiltypleasures001]

Hi iam so sorry about your sister, I feel compelled to point out though that you married similar men, and when you do get some head space think about whether you want to be in this position in the future.

Like her dh you cannot rely on yours to look after you and you will be just as vulnerable as she is now. You have the rare gift of hind sight here, maybe use it to make your plans to secure a safer future for yourself. God forbid your dh becomes incapacitated or in a position you have to look after him full time, or vice versa.

[cozietoesie]

iam

Your husband is showing his colours now. He's being quite vile and at a time when he should be throwing himself into helping you as much as he is able.

I think you'll have to move closer to your sister or at least find some way to reduce the gap in this coming short while. (You're so, so tired that I'm quite concerned about you.) I'd take up Danger's offer to look into support groups because I think you need additional help on the ground.

[mulberrybag]

iam I think I remember you posting about your sisters situation a while back(apologies if I've confused you with another poster)
I feel so sad for you to be at your stage of life and to be feeling so trapped and unhappy.
Could you perhaps see a way out at all ? I know you say you cannot afford to live separately but is there any way you could rent/live in your sisters house ? I know you say it would burden your sister more as she is embarrassed by the state of the house but surely she would wish for your happiness more than anything, especially as she has had such an awful imprisoned life. Could you find a professional clean and then move in ? Please try and talk to her, open your heart to her. I'm sure she would hate to hear of how unhappy you are knowing she may be able to help you out. Your posts really touch me and you deserve to lead a life of happiness

[iamsufferingnow]

the sad but reality is that my sister has terminal cancer and will definitely not be returning to her home.
mentally she is as sharp as could be, it's her tragic body that is giving up.
also she lives in a rented apartment, which she has done for the last 45 years.
so, it's daily support she needs.
if she was taken to a hospice soon, at least I would feel comforted in the knowledge that she is in a more holistic environment rather than the hospital wards she has been in this year.

don't get me wrong, the medical staff have done all they can, continuous medical care but she needs peace at her end of life.
so, tomorrow I should be closer to the arrangements that can be put in place for her.
I begged them to allow her to come to me, but her medical needs are so diverse that practicalities wouldn't be the best for her.
so, for me, it's just a day at a time.

but, having experienced this, I am now fully aware how inadequate my "dh" is when events happen that don't affect him.
I must rely on my own support network for the time being, and make decisions afterwards.
so ladies, thank you all for your support and advice, and kind words, I feel that I am not alone.

[cozietoesie]

I would thoroughly support the aim of a hospice for her if that is what can be achieved. My grandparents were in a hospice (the same one) towards their end and it was a caring and loving environment. (Which also gave top notch medical support.)

The best of luck to you and her for tomorrow - and there's usually someone around here to talk if you need to.

[Getuhda348]

So sorry about your sister just wanted to say what an amazingly strong woman you are for dealing with so much. God bless you xxx

[cozietoesie]

How did today go, iam ?

[iamsufferingnow]

my utter distress...my rage....my despair.
my dear friend demanded she drove me the 4 hours to my sisters hospital yesterday.
I knew it would be a defining day for her.

well, yesterday, as soon as I arrived I searched for the doctor whose name I had found out earlier.
very kind and caring she was.

she calmly explained that my sister wouldn't be sent to rehabilitation as had been applied for, numerous times in the proceeding weeks.
she told me, in a considerate way that it had been refused as she wasn't able to "sit in a chair for 6 hours" and until that, she wouldn't be accepted.
dear sister is unable to walk more than a few steps even with support and a frame as she is so weak.
I asked what the next step would be as she has been there since june...via ambulance to icu.....
she looked somewhat bewildered as said she wasn't sure. I asked if she would be sent to a nursing home.
bearing in mind sister has one half functioning kidney, stomas, osteoporosis, frequent need for a drip for dehydration.and is so weak that she is barely able to lift her head sometimes.

anyway, I went to the ward, and saw my sister exhausted lying on her side as the stage 4 pressure sore is through to the bone.
she smiled as I walked in, then gave me the news that she was "going home"
a 85 year husband with dementia in care, and she alone.
"going fucking home" I thought with rage.
how the crazy fuck can she be discharged.

11th floor flat, no friends or neighbours who can pop in to see if she is okay.(that is because abusive husband isolated her from the world...just me and you he always said)

she said a nurse would come every other day, and they would provide carers and a "stool" to help her in the kitchen...fucking hahahha.
SHE CAN'T EVEN GET OUT OF BED AND STAND UP.
she needs "turning" every 2 hours, who the fuck will do that at home.
she hasn't even got a washing machine, (all the incontinence bed linen etc?)

is this what happens.
discharged home, left completely alone until she dies.

I have asked/told staff numerous times I want her to come to me, or a placement close by, with medical help/advice and I will care for her, but it is never addressed.
I don't want to be one of these people who say after the person dies " it was awful"
what the fuck can I do now to help her.

I am so distressed today, oh yes, her fingernails are so long it was a disgrace, I tried to cut them but couldn't as they were rock hard...the calcium tabs had caused it..
she said her toenails were black and needed cutting..they looked "hideous"..her words.
I spoke to a nurse she said she put it "in the book" but said it would take "ages! to be done.
her hair still hasn't been washed since admission (june).
I went back to the doctor, with a fair amount of anger and said my dear sister is being discharged.
Doctor looked surprised, looked through the notes, and said the physio had recommended discharge...oh yes, for Wednesday...
what,
what,
what,
the fuck is happening.
doctor said she will call me today.
help/advice desperately needed.
is this what happens at end of life, just shunt them out, alone, in bed 24 hours a day, no emotional support, just 4 walls and emptiness.

[dollius]

Can you find out where the nearest hospice is to her hospital and approach them directly for a place? Beg the consultant to refer her there? You are right, she needs holistic, round-the-clock care now and it sounds like she doesn't have much time. Which hospital is she in?

[dollius]

Can you call these people and just ask them what it would take to get her a place there?

[iamsufferingnow]

thank you.
yes, the hospital has a hospice close by.
you know what, I am desperate today, I don't want to ring and find my sister has been chucked out like a piece of rubbish.

the hospital is the royal free in hampstead.

I shall ring the doctor this morning, and see if she has any further information, as she appeared quite shocked when I informed that a discharge was imminent.
I am definitely going to be pro active today, as stories in the media re seriously ill people being discharged in the middle of the night, without even informing family.

[dollius]

Did you see the link I put in my second post? It is the website of the North London Hospice which has several hospices around North London.

If I were you, I would call them and ask how to get your sister referred there.

So sorry you are getting such shoddy treatment. A dear friend of mine died of terminal cancer at Christmas and she had immediate access to a hospice near her (this was in Sussex though). I went there with her a couple of times and would now definitely just get directly in touch if the hospital is being no use.

I'm afraid the Royal Free is just too stretched. A friend of mine who gave birth there five weeks early had terrible treatment - was left for a day on a trolley with a premature baby and no help at all, nowhere even to put the baby down so she could clean herself up.

[cozietoesie]

This is madness. Can you contact Marie Curie or Macmillan's? I think that, despite us being here for you, you could do with some more immediate help on the ground.

(My GPs were in a hospice in NW London so they are around not that far from your sister.)

[dollius]

Yes, please call the hospice for help with this or MacMillan's. You need an advocate here who can fight for you. The hospital is not fulfilling its duty of care.

[iamsufferingnow]

yes, I had in mind re macmillan,
yes, royal free is just, well, words fail me.
I am ringing the doctor right now.
if it is true my dearest sister is being shunted out tomorrow, I will roar like a lion today

[iamsufferingnow]

doctor not available.
spoke to nurse, doesn't know anything.
waiting for discharge co ordinator.
told them I shall go to the media.
sisters home conditions inadequate.

[cozietoesie]

Try phoning Macmillan's.

[iamsufferingnow]

I told discharge co ordinator many facts she didn't know.
she said the physio said my sister walked aided, frame and physio, 15 mtrs.
my sister said she couldn't walk to the ward door, tired, dizzy and sick.
she is going to ask for the keys to sisters flat, as an access visit, to see for herself the squalid conditions.
I bet anything my sister will refuse to allow her the keys.
so ashamed of the squalor..her words.....
even said to me according to the records, sister is pretty mobile.
I exploded and asked her the last time she saw her getting out of bed and walking.
she admitted she hadn't.
then admitted the "mobile" record was from last year, fucking crap, I need help.
just waiting for her to ring back to tell me if sister has given her the keys.

[cozietoesie]

Did she say when she would phone you back?

(Have you tried phoning Macmillan's as well?)

[iamsufferingnow]

yes, she said she would phone me after she had asked my sister for keys, ostensibly for an "access visit" prior to discharge.

when she does I will ask her where macmillans can come into this.
juts waiting now.

I am reluctant to ring macmillan just yet, I want to exhaust all avenues, then I will begin to play rough.

despite the doctor reading the notes...eventually...and discovering that the physio had recommended discharge home,it still said for Wednesday, but the discharge co ordinator said definitely not. so at least tomorrow isn't zero day.
still waiting as she said she would go now to speak to my sister, but I can wait

[cozietoesie]

Fair enough. Let us know when you hear.

You're being very strong for her.