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.

The usual reason for refusing interim care is that the assessment team don't think the patient will make the required progress within the set timeframe (usually no more than 6-8 weeks)

thank you carrotvan,

yes, it is the rehabilitation that has been applied for before, but they said the 6 hours sitting in a chair was their criteria, and sister was unable to do so.( i don't think i could sit in a chair for 6 hours myself)

but now it appears, for whatever reason, that maybe the criteria was possibly too.....well, i don't know quite what......

but anyway they have applied yet again.

she was quite enthusiastic , saying it would make her stronger after being in the ward since june.
she asked if i thought it would be good for her, but before i could answer she had to go to xray.
onwards and upwards.
thank you all so much.
xxxxxxxxxxxx

You have broad shoulders indeed - but nonetheless, make sure that you eg eat properly and keep on getting out for those walks to have some time on your own. You need to take care of yourself in order to be capable of standing up for her.

just to say, thank you all for helping to keep my focus and determination over the last days.

Also, a big thank you to PRECIOUS, the wonderful kind and caring social worker for the elderly.
She has just rung me back, asking how I am, and how my sister is.

the ONLY person through these difficult weeks, who truly cares.

I care too OP.
I find myself thinking about you and your sister often as I go about my business - but I know what you mean.
Fingers crossed for you and your sister, that the rehab place materialises this time.
The only thing I wanted to add in support of the pp who suggested POVA assessment and your sister's own mental capacity, was, that evidence of her lack of insight is surely already apparent as her demented husband was left at home without any support but she didn't tell anyone so that some arrangement could be put in place for him. If I remember correctly from your earlier posts, it wasn't until he was found wandering the streets, that he was taken in to residential care.
I would be pointing that out to anyone who will listen to you.
Take care of yourself.

Are you today iam?

gosh, at last a more rested night after all this, for so long.
wingedharpy, thank you again.

yes, I hadn't actually thought of It in that way, but equally, for decades he refused access to anyone at all, even family, so I suppose my sister knew it would be pointless trying to allow "help" in for him.

he used to hound her each time she was admitted, even last year, when I had booked to stay in a premier inn to be closer to her, he continually rang her until she finally told me to go home.....with tears and sadness in her eyes....

yes, another thought to whirl around.

sister rang last night, and spoke for almost an hour, on different topics, she appears to be relieved and uplifted at the thought of rehab.

I believe she knew deep down that to be discharged home would be a massive mountain to climb for her just now.
so, for those so called "professionals " who were prepared to allow her home at this time, shame on you.

also she said the doctor visited, the ot, the physio, then to top it all, the actual consultant, who told her...his actual words...."lots of people are battling on your behalf"
ha!
ha!
ha!
at last she isn't being looked at as simply a tiny body in a hospital bed.

thank you all ladies, for your tremendous emotional support.

at last, hopefully, there will be some resolve.

but onwards and upwards, live to fight another day.....shouldn't be a fight for decent and kind elderly care, but it appears it is.

my other sister lives on the isle of man, she is a nurse.
she told me last night that a colleague of hers has had a similar experience with her elderly mother.
shame on you.

I'm glad you had some sleep. I was going to recommend that but, unfortunately, that's not something you can just order your body to do, however much it's needed. Well done so far.

I hope you feel buoyed up by all the support she now has- in real life as well as here.

oh yes, thank you, I feel so strong again, I was beginning to waver after all this time, but today feel like a rottweiller, and can be there for my sister in her time of desperate need.

not right on those who have no one to fight their corner though.

but, until I am informed that she has a bed in rehabilation, I won't waver.

I am planning to visit as soon as I realistically can, operation stack is still causing massive gridlock around here, but I will get there by hook or by crook.

thank you all again, your responses have been a lifeline for me.

Wonderful to see the fabulous support you are getting on here, I am. And God Bless Precious

Dear woman, you have been through it here. Do contact the Care Quality Commission about the shocking 'care' your sister has received..

..When you have a minute! Not many of those at present . I hope the man you live with is being put in his place and the rottweiler extends to him xx

oh yes, the support is so desperately important at times like this.

husband is so so so sorry he didn't support me.
he said I closed down during the phone calls and everything.

I suppose I did, I just didn't want to talk about it to him, particularly after the heart attack and then the hyperkeratosis procedure. I guess I felt he had enough to deal....with my constant support...but last night, I explained the awful last few days, and he was genuinely sorry.

we are talking now, and I guess we have both dealt with different issues in different ways.
he said whenever I need to go to the hospital he will willingly take me, as I don't feel able to do the long London drive from where I am just now.
I will have a hard talk to myself today, and put everything in perspective, and take one step at a time.

and you know what, I have learned a lot from this.
I have always been there to help anyone I could through my life, my husband says I am the kindest person he has ever known.

but....I shall go into our elderly neighbours this afternoon, and ask them if there is anything I can do for them.

it seems that through no fault of their own, the older people amongst us, accept their lot, without realising that with a bit of help, their lives can improve drastically....with support...

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!

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

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

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

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.

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?

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.

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

It's something at least. (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.)

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

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!

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

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.