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Relationships

wish i had support now....

162 replies

iamsufferingnow · 25/07/2015 12:08

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.

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cozietoesie · 26/09/2015 20:04

How are things, iam ?

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cozietoesie · 10/09/2015 12:55

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?

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cozietoesie · 10/09/2015 09:10

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.

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forumdonkey · 09/09/2015 22:54

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

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GammonAndEgg · 09/09/2015 19:43

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.

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iamsufferingnow · 03/09/2015 14:58

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.

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cozietoesie · 14/08/2015 13:03

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?

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iamsufferingnow · 14/08/2015 12:41

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.

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cozietoesie · 14/08/2015 12:29

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?

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iamsufferingnow · 14/08/2015 11:45

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.

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cozietoesie · 14/08/2015 11:17

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?

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iamsufferingnow · 14/08/2015 10:55

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.
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iamsufferingnow · 05/08/2015 10:48

thank goodness I took myself in hand yesterday, and made the journey to the hospital.

when I arrived I immediately went to find precious, the wonderful social worker, who had been so kind and caring .
she left her work and met me at sisters ward, who was in theatre having an endoscopy.
she explained that sister was not going to rehabilitation, but to a nursing home, the same place as her husband with dementia.
she said my sister had finally agreed to go.

BUT, and this is the massive BUT.

whilst waiting for sisters return, her husbands granddaughter arrived.
at first she appeared somewhat hostile, I had never met her before in my life.
she quite crossly said "isn't she back yet", I said no, and that we had made the 4 hour each way to visit, and didn't mind waiting however long it took.
I explained that I am her sister, but due to her grandfather hadn't been allowed to visit my sister at home for decades, only managing a secret visit when she was at work.

At this point granddaughter softened, and said...I know him...quite menacingly.
I asked her if she had heard the latest news re sisters imminent news re the same home as her grandfather?

she said ...no she hadn't ....

then she was literally spitting blood, saying she didn't want that evil abusive man anywhere my sister, she doesn't want him to have access to her ever again.
she angrily said she demands the social worker to come to see her immediately, as she works in the same hospital.

then proceeded to tell me just some of the evil abuse he committed over the years.
when a nurse attempted to visit when sister was bedbound, he locked the door and refused the desperate help she needed.

then, this...which haunted me last night...

the day sister was taken by ambulance into itu at the hospital in june, where they saved her life, ,he forced her to put his slippers on (she has special boots for the sores, stomas, one kidney )and somehow manage to drag herself to a shop to get him a newspaper, even though he is totally fit.

there is much more that I don't know, actually can't bear to hear more to be honest, yet sister suffered in silence.
I begged her over the years to come to me for a break,offered meals delivery, and lots more, but he wouldn't allow any help for her.
nothing to do with his age, he has always been this way the granddaughter said.

anyway, this morning, I was ready for war.i contacted precious, a kind lovely caring person,
at last today, a separate nursing home is being searched for in her area, so she won't have to have any contact with this evil abuser.(tell it how it is)

I gave her the option to come to me at home, or a nursing home nearby, but she wants to stay in the area she has spent the last 50 years of her life, which I accept.

so, finally today , once a nursing home is available it's the next step for my dear sister.

I quietly and calmly told sister not to worry, she doesn't need to worry what will happen, she is too vulnerable to have to worry, she replied...I know, have a saviour...you...brought tears to my eyes.
so, just waiting to hear when she can leave the geriatric ward, and move to a more "homely" environment.

so, finally granddaughter and I are on the same page, we are texting today, she has just said the endoscopy results are normal, though a biopsy was taken, waiting for results.
at least now, I have another person and , between us we can support/battle/care for my sister together.

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tunnockt3acake · 04/08/2015 23:55

You must have needed a well earnt day of rest

I hope you managed to eat, sleep, get some rest for yourself

At the moment your sister is in hospital, so she should be getting good care

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iamsufferingnow · 04/08/2015 09:45

ahhh, bad day today. I think it's all taking it's toll on me.
woke up this morning, feeling pretty awful, tired, worn out.

I will have to give the hospital a miss today. the thought of the journey fills me with horror.
I will ring though, hopefully the sudden tests will begin and there will be some outcome that may be able to be addressed.

it's just tender loving care my sister needs.
is it too much to ask.

anyway, thank you all yet again .
today is a kind to myself day!

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tunnockt3acake · 03/08/2015 23:51

I hope that you yourself are ok today ?

Be kind to yourself

Eat regularly, stay hydrated, plenty of vitamin C, try to get good sleep

You need to keep up your strength to continue to help

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cozietoesie · 03/08/2015 18:31

It's something at least. Smile (I would have thought that a truly sympathetic and caring doctor would have told an elderly woman something like 'It's our pleasure' or 'You need them' - but Hey Ho. If it gets the job done.)

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iamsufferingnow · 03/08/2015 18:15

amazing news.
my sister has just rang in a very positive way
she said the doctor has just told her that tomorrow she willhave an endoscopy, then a mri scan.

she thanked the doctor, who replied...".it's their duty of care".....AT LAST

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iamsufferingnow · 03/08/2015 13:02

yes, I will explain to Precious the conditions which have affected my sisters life for so long.
maybe with her expertise, we can understand the best way forward.

at the moment my sister is holding on to the thought that going to rehabilitation will allow her to gain some strength and return home one day.
I believe that my sister fell through the net of elderly care.
although to be fair, she managed to "hide" the severity of the situation even from me for so long.

I begged her repeatedly to let me arrange for cooked meals to be delivered, but she said he didn't "want anyone coming in"
so, another day, but these dark clouds are hiding the beautiful sunshine.
I suggested that maybe I can take her in a wheelchair for some fresh air tomorrow, she said it would be lovely.

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cozietoesie · 03/08/2015 12:24

So she's both an abused woman and an abused elder? I am afraid that that latter is outwith my scope of experience especially as it's complicated by her husband's dementia. Perhaps other posters will have some more thoughts on it.

I assume you'll be filling Precious in completely on past circumstances as well as current troubles?

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iamsufferingnow · 03/08/2015 11:54

just a small update.

yesterday my sister told me that last year....even when she was constantly being re admitted to hospital....her gp had offered a care package for her and her husband...which her husband refused, yet sister was desperate for any kind of help.

she also said that she had been offered palliative care via the gp, also refused, so no wonder that she was repeatedly being rushed back to hospital.
she never confessed this to me despite regular phone calls trying to offer help.( I was never allowed to personally visit...ever...and I didn't want to cause extra anxiety for her)

one small piece of reassuring news is that the physio she received last week...was quite different to previous times." I need it " she said " as I have hardly moved for weeks"

but equally, she has repeatedly asked for the results of the kidney biopsy she had some weeks ago, but was told friday, that she will have to attend out patients to be told???????

she also said "i'll wait for you to wash my hair when I eventually go to rehabilitation" i accept that, though she says it feels awful as she has been in hospital, via emergency , since june.

I accept that a patients decision is their own to make at any age, but the circumstances of these two elderly people, my sisters (75 yrs)complex medical needs and husbands (85yrs)mental health issues , surely could have been alleviated somehow?

Anyway, tomorrow I am going to the hospital, I shall speak directly to the amazing social worker precious, and try to move my sisters care forward.

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iamsufferingnow · 31/07/2015 15:31

thank you minio5,
the benefits have just come into the equation!
even though for many years my sister was caring for her husband, despite her serious poor health, there was never any financial help, he wouldn't allow it.
I asked sister it yesterday, if she had received carers allowance, sand she simply said...that would have been so helpful....
I am hoping to travel there on sunday, and if she is well enough I will speak to her re your points...taking a letter with me....

I will definitely keep on top of it that's for sure...I haven't got this far to allow it to slide back to square one.

as was mentioned earlier, I am concerned that the efforts to discharge my sister home, could involve returning her husband back, out of care.
but for now, it's a day at a time.

I just wish that sister had been braver and told me the truth about her situation even 4/3/2/ years ago.
each time I would ring, if he was there, she would sometimes stammer, but say she was okay, but now the truth is coming out, I understand different.
but for now...it is to protect and support her in every way possible

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Mini05 · 31/07/2015 13:52

Just a thought
Does your sister and husband get all the benefits that are due to them????
Perhaps you could get SS to look into it, what there entitled to.

What about AA ( atten allowance)

Re the getting sister to sign over to you her affairs. Do it now
Get writing the note and get her to sign it( also get 2 nurses to witness it)
Or it won't stand)

Hope it all comes together for you and your sister, keep on top off it otherwise you will just get pushed back. I'm a firm believe in getting yourself heard, let them know your not just going to sit back and wait for them!!!!
It's to bloody late then, give your sister the best care she deserves in her later life now

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springydaffs · 31/07/2015 12:43

Erm, iam, you have enough on your plate! Can you contact local orgs about your neighbour? Eg the church, WI...

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Seriouslyffs · 31/07/2015 12:18

I'm so pleased your husband has seen you need practical support. Is he a bit of 'heads down least said soonest mended type'?
Going to see your elderly neighbours is a lovely idea, but leave it a little while. Look after yourself a bit now!

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