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.

just to say , at last a a positive update.(and to cut a long story short)

*2 weeks ago my sister was to be sent home from hospital with a care package.
despite repeated requests for rehabilitation at st pancras hospital.

*I week ago, my sister was assessed for a nursing home, which I visited and was happy with.
*I had an appointment with the consultant, who said sister would leave hospital, where she has been since june, for the nursing home last Wednesday.

*nothing more was said, until my sister phoned Wednesday in a very confused and agitated state, saying she didn't know what was happening.

*I contacted(battled) the hospital Wednesday asking(demanding)what was happening as my sister was so poorly with not only complicated medical issues but emotion stress)

*I was told, quite casually, the nursing home had decided they were unable to take sister due to her complex nursing issues.

YET, NO ONE HAD DEEMED FIT TO TELL EITHER SISTER OR MYSELF,
shame on you all.

sister refused to answer her phone to us, leaving me so worried that I decided I would make the trip there on Thursday.

*Thursday morning early, the hospital rang to say sister was to be transferred to st pancras rehabilitation unit that very day.

*I rushed to get there to be at her side when she was transferred
.
*I arrived there at 12, but no sign of sister.

• st pancras staff were repeatedly trying to contact sisters ward, but they "didn't know where she was"...turns out they had the wrong department on their referral letter.

I told them the actual ward, and it turns out my sister was still there waiting.

*then then said if sister wasn't there by 3pm she wouldn't be admitted that day.

• I prayed to god she would be there in time.

*at last she arrived, grabbed my hand and she is finally at st pancras hospital.

*such lovely staff.

*such lovely ward.

*the admission took over 3 hours, they checked everything, nurserd her pood ulcerated feet, attended her stomas, and were so king and loving brought tears to my eyes..even now as I am writing this...
so, at last sister is having the best care she could.
well done st pancras, poos show royal free hampstead.

Well done St Pancras - and well done all the people who helped, you in particular.

How are you holding up yourself? And is DH being supportive through all this or has he reverted to his previous behaviour?

thank you cozietoes,

yes,the staff on Rochester east ward, were just MAGNIFICENT, i couldn't believe how much care and attention my dear sister received.

today, I feel as though a massive weight has been lifted.
i'm not expecting miracles at all, just that my sister is in a caring environment.

well, dh, what can I say, when I received the early call from the hospital re immediate transfer, I immediately checked the train times etc, and simply said I had to go.
he offered to take me to the mainline station, and that was that.

a lesson I learned from the age of 14, was...if I want anything done, do it myself...

but today, a day of immense relief.

so, after so long, at last there has been resolve and sister is in the perfect place.
I shall go there with my lovely friend who has supported me through this, on Wednesday.

I guess I didn't really expect him to have had a Damascene conversion - but that's not the most immediate thing, probably, as long as you can keep going with things for a little and help your sister to be in a better place.

The granddaughter matter is a little odd to say the least - eg why did she turn up at your sister's ward if she disliked her grandfather so very much? Have you had any feel for that in conversation or texts?

re the granddaughter, I find it confusing to say the least.

she said in no uncertain manner that he is"evil" and doesn't want him anywhere near my sister ...ever...and that she "hates him", so maybe she is on sisters "side".

but, in any communication with me, she is rather sort of "caustic" and appears angry , maybe after not being allowed near sister for decades, only the stolen phone calls, and "secret meetings" perhaps she feels that sister is "hers" as in the past she hasn't been aware of any contact?
I try to be kind and caring towards her, ignoring the comments and confrontation.
even yesterday, she sent a text that was sort of bullyish.
but again, that is the least of my worries just now.
my next issue is trying to find a way for daily contact as in the previous hospital she had the tv and phone at the bed.
sister has a mobile, but can't use the keypad to text as the chemo spoiled her fingertips, so I am looking at a sort of elder phone with large numerals.
but a day at a time, at least she is now in a good place.
it is only now that with the witness from the granddaughter, I understand how and why medical treatment was refused via the husband, which has ultimately led to medical issues that may have been prevented if nursing access had been allowed at least last year when she was periodically in hospital or at home.
but now is now, and I am doing my very best.

And your best is very considerable, especially considering the other issues you have at home. Just be careful you don't spend too much more than you're getting back in - both emotionally and physically - for an extended period eg keep up those walks on the beach so that you can stay together yourself with some good thinking time - or solitary mindless time. That would bring you as much benefit.

The granddaughter certainly sounds subject to some strong but confused emotions. Could guilt be one of them?

at the end of my tether now.
13th august....after sister's admission to rehabilitation ward,....... I felt secure in the fact that it appeared to be just the ideal place for her and her complex medical needs.

How wrong I was.

17th august, ....sister was taken by ambulance back to A&E to the previous hospital.

She was resuscitated, then 21 august was readmitted to rehabilitation ward in other hospital.

I rushed there to find this tiny little skeleton dumped in a chair , barely able to hold her head up ,in danger of topping forward onto the table in front of her.

"Please let me go to bed", she was weak, frail and exhausted from the journey yet again from one hospital to another..

Of course you can I reassured her, but she said she had asked the staff to "allow" her to lie down, but they said the bed "wasn't ready"

Sister had been there since midday, it was now 2p.m..
She was soaking wet from incontinence...stomas etc....
Her bed WAS ready and I asked a nurse to get a wheelchair so sister could go to bed.

She came with one, "instructed " her to "get up", I managed to help sister to the chair , as her poor legs and arms were too weak to manage alone.
Just pitiful.while the nurse simply watched, no eye contact at all, not help.

Sunday 23 august ....my beloved sister spoke to me, pleading and tearful...help me, please help me....she was in terrible pain it broke my heart.
Previously sister had been prescribed oromorph 4xdaily after resuscitation,in previous hospital, but she was obviously in intense pain.

Once she was safely in bed, I spoke to the nurse re the omoroph, she said she would check and immediately gave it to sister, saying it was on demand not prescribed.

my darling sister had been there all that time in pain, yet no one cared.

I was there as I said at about 1.50, my other sister rang to ask how she was, and was told sister was "in bed sleeping peacefully"

Apologies all, but sister had been dumped in a fucking chair ,I was there, attempting to care for her and get her into bed . She wasn't "sleeping peacefully " at all.

Wednesday 26th... Needless to say, sister was re admitted via ambulance to A&E to previous hospital for resuscitation .where she is now, having moved wards for the 3rd time.( I have counted the moves, this weak and frail cancer patient has made since june....and it is...at....least....12 times!!!!!!!!!!!!!!!!!!!!

Although previously sisters husband's granddaughter appeared hostile, we have a close bond via our love for sister. I feel sad for her as she was/is a major part of sisters life, whilst we were isolated from her due to the abusive husband.

So much more this week though ,I just hope there isn't a plan for a return to rehabilitation.( then it will be a emergency return for resuscitation within a few days ) I am going there tomorrow.

I hope I don't have to stand in a corridor, with a bundle of clean sheets and blankets, waiting, just trying to find someone, anyone to change my soaking wet sister like I had to do last Friday , having told anyone who came to her ward, that she was SOAKING WET AND IN DISTRESS.
Although sister wasn't lucid at that time, and probably has no recall of it..

No one fucking communicates, right hand and left hand crap.

Each time I have been at her bedside, and sought doctors out, they respond with either, I don't really know this patient or, they have just come on to the ward.

God help me, I am beating my head against the proverbial brick wall.
Three fucking times sister has been moved, not one bastard bothered to let us know. When I arrive at a hospital expecting to see sister lying in bed, the bed is empty and I have to hunt for her.
Fucking disgraceful.

So Sorry To You, this is so long, but it helps me , written with tears in my eyes.

I have just caught up with this thread.

I am so very sorry that your sister - and you - are having to go through this.

I hope things are more peaceful now.

I've just seen your thread OP. Bless you and sending my love to you during this difficult time. I hope you are looking after yourself too. Be assured that you are doing everything you can for your DSis and be proud of your own strength and fight for her. It is shameful that you are having to fighting for basic care for your lovely sister, but she is lucky to have a wonderful caring sister like you when she needs you the most.

My thoughts are with you and your Dsis xxx

Just caught up with this,iam. Apologies for the delay.

I have to go off for a bit but I'll be back later on this morning.

That took longer than I thought it would - sorry.

That's hellish iam. Have you contcted Age UK to give you some support on the ground? And how is your husband behaving in all of this?

How are things, iam ?