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Why won't anyone do their jobs? - Carers UK Forum

Why won't anyone do their jobs?

Share information, support and advice on all aspects of caring.
Long story. I'll try to be short.
Mum is deteriorating quickly. Each month has a seizure which results in more brain damage ( she had a brain tumour at 32 years old, 20 years ago).
She has complex problems. Speach, deaf, can only walk a few meters with zimmer, cant remember my name half the time, let alone any appointments, info or ideas. She gets very angry and abusive. Very weak, china migs are now too heavy. So many issues.
This year been in hosp 12 times. In october she was in itu for a week.
We couldnt cope- she went into respite. Social worker promised us the world... She had a fit there in front of me- staff were non plussed and ignored my shouts for 999. She ended up in itu and losing more of her brain function. Our social worker dumped us as now we fall under the hospital social worker! Weeks later she left hosp and went to a rehab. The new social worker there said she was fine and tried to discharge her with two care visits a day. I complained and said with three visits a day i was still doing another two visits a day and almost having nervous break down, mum was falling at night and we couldnt cope- hence mum being put in respite. she added another call.
A nurse who knew my mother for a week did a NHS continuing care assessment. She said my
Mum had no problems. We nearly choked when we read this! I complained again and emailed my mothers neurologist and gp. They too were shocked and disgusted, but by the time they wrote back to the rehab mum was discharged. So there we were no social worker and im doing 3 visits a day and getting 10 calls and 5 voicemails a day as mum has no control over her impulses and she needs help 24/7- so calls me.
Ok im not sticking to the point of the post. I have not been able to get a job as every day when
Im not caring directly for my mum i am calling GP, community matron, adult services blah blah blah because none of these people will take responsibility!
Yesterday i spent all day with
Mum in a&e as she OD'd on her medication as she forgot she had taken them already an
Hour previously! ( yes they r blister packs clearly labeled but this is how bad her cognition is). The carers r meant to monitor her meds. In reality they
Just ask her if shes taken them. So the hosp social worker says she cant go home til her meds are sorted... I call the care provider and they say theyve emailed someone to sort out restricting her meds... Today i call to confirm this is happening and fine out the
Woman is on holiday til 2012!! Why bother? I harrassed social services last week until they gave us a social worker again... I call her and her vm tells me she works 2.5 days a week. Her office say she isnt in- so is in 1.5 days this week! I say this is urgent- no one cares. I have honestly thought this year these so called professionals want
Me to kill myself and my
Mother as we are clealy just an annoyance. She cries every day to me as she feels unsafe. She can go into a huge seizure at anytime. She is soo vunerable and weak. I dont want to even
Be a carer but wat can
I do? Leave her to live out her remaining time in the gutter? My mental health is shot to pieces. And tomorrow i know i will wake up to voicemails from her that i cant understand as her speech is so bad. I will cry and call these people who we have been told will help us and again we will be alone. Why wont they help us? What happens to those who dont have anyone to fight for them?
Oh Britney ((((((((((HUGS))))))))))
I wish I could suggest something. People just don't do what they should and don't realise the seriousness of these situations Image Image
I don't want to be the one who suggests the obvious, but is there anyone else you could call? Family or anyone to get them in to help out? It may take some guts as asking for help and swallowing pride always does but it might be better in the long run if there is anyone who can help. If not, I apologise.
I wish there was more I could say but it sounds like you're doing everything right and that social services and NHS are seriously letting you down Image
Your story sounds like mine a few years ago, shouting, screaming for support for my younger son, who had insulin dependent diabetes. He died, and I will never forgive the NHS or Social Services.I have no answers for you, because when they don't want to listen, then they just block their ears. They get away with so much because they do not "have to" abide by guidelines. Guidelines are precisely that. Sadly my son would still be alive, if NHS and Social Work staff had acted on guidelines.
Are there any support groups for the disability that your mother has?If so, they may be able to recommend a way for you to get some help. I do hope so.
I know the feeling of desperation and complete helplessness that you feel because you unedrstand that if your mother gets the right care, her life (and yours) will be less stressful.

Good luck. x
I wish i could give you a solution,a legal one,but everyone else has said it all.I am so angry that this situation arises,and all we get from the Government,Social Services,The NHS,CQC,Uncle Tom Cobley and all is B.S. I`m not going to rant,[again],all i can do is sympathise,and hope that somehow you get through all this. Image Image Image
I can only sympathise we have had similar but not so severe problems our salvation came in the form of the community matron who seems to be able to coordinate others and get action. (She is very nice but quite intimadating). Like Audrey suggests maybe the GP can help.

Someone with better knowledge may be along soon
Britney, there are a lot of issues there: I strongly suggest you call the helpline at Carers UK for advice.
Hi Britney

I too have been to similar points in my caring role and this just is not on that we are driven beyond reason to very dark places and even then "they" dont listen to us, the ones who have been there everyday for however many years. I have even had nurses try to tell me that my caree is conning me and that he can walk.

There needs to be true involvement of the carer in all care assessments and the carer needs to be listen to. There needs to be a stop to this situation where the caree decides they are not going to respite to give the carer a break. If carers are being expected to give up their lives for years on end there has to be co-operation with the carer and respect for what the carer does and gives up doing to provide that care

We should have at least minimum wage, statutory holiday time and emergency respite and planned respite when they are needed not just when it comes up some Social Worker's back to agree to it. There are so many of us I dont see why we could not force the government into dealing with us respectably. We should be treated decently or there will be no carers caring for family members in the future.

We need carer's official organisations to be a whole load more forceful.

Little Lamb
Little Lamb, I was told by the Diabetes nurse that my son was conning me, when he had been into Intensive Care for the eighth time in four years. She said she had had a long talk with him and he knew full well what he was doing,and he was doing it for attention. I was so distressed,she sounded so convinced,I did what she told me to and stood back. She truly made me believe that my son was doing this to get my attention. Less than five months later he was dead.
I can never prove it(and I couldn't get my son back even if I could prove it),I have even found out since that when she spoke to me, 24 hours after supposedly talking to my son, she was NOT on duty. But again, I cannot prove what she said.
Since he died, we have stopped taking phone calls, I prefer to deal with emails or letters, so that i can prove what is said to me.
It really hit a nerve when I read those words Little Lamb. He died due to complications of his type 1 Diabetes,and this is all over the news today. 2 people between the ages of 15-34 are losing their lives unnecessarily due to this condition every WEEK in England alone.
Sorry for woffling on, I am struggling at the moment from day to day,and feel angry and bitter. I am trying to find some way to overcome this, but then I try to get professional support and hit a brick wall.
HAPPENINGS JUST OVER THE WEEKEND AND BEGINNING OF THIS WEEK - A dear friend with aggressive form of MS, in the later stages of her life. Husband in latter stages of prostate-spread-to-liver cancer. She is his full time carer, they get no help at home, except from DNs. He gets admitted to local hospital due to a poss urine infection, is given an emergency op and catheter inserted etc, friend stays with him. He is taken to general ward, she goes too. At 3am she is told by ward staff that she cannot stay (she protested at this, but was offered a chair in the corridor outside) can't sit there all night in her condition, so had to go home and taxi is called. In the dead of night, at 3.30am, deserted, eerie hospital, she has to go on her own down a long walk corridor, then downstairs in the lift to the front entrance and wait for taxi (£30 fare home). All by herself. No comforting words, no assistance from anyone, just left on her own to deal with it.
Next couple of days, trips to and fro visiting hubby. Discovers that when the tea trolley comes round AND when the dinner trolley comes round, the curtains are drawn round his bed and the nurses are changing his bags etc. NO DRINK IS OFFERED. NO DINNER IS OFFERED OR KEPT FOR HIM. Both trolleys pass him by, without a word from any nursing staff. No attempt is made to bring him a hot drink (he only has the ubiquitous jug of water on his cabinet). No attempt is made to bring him or make sure he has a meal. My friend, not wanting to make a fuss, works her way all the way back to the ground floor cafe and purchases sandwiches and hot drink from the vending machine and works her way all the way back again - without her stick, cos she can't carry stuff one handed of course, she can't.
My friend has arrived to find him very uncomfortable due to a full bag, which he has already asked the nurses to change some time ago. She changes it herself and mops up everything afterwards and deals with it.
My friend has found him sitting with all his 'tubes etc' in the bedside chair, waiting for the nurses to change his bed (due to continually leaking bags and tubes), dressed in a hospital gown and freezing cold. NOBODY HAS EVEN FETCHED A BLANKET FOR HIM TO COVER AND KEEP HIM WARM.
Is this the way that nursing staff treat patients? Is this the way to treat a man who is in the last throes probably, of cancer (they've already decided to stop his chemo treatments)? Is this the way to treat his wife, who is herself elderly, unstable on her feet, can't walk without a stick and already has a totally debilitating disease herself?
Britney - nobody does their jobs properly anymore, because I don't think they really, really care. Nobody can be bothered, except US. As long as they get paid, that's all that seems to matter. I really feel for you, it's not ********* fair and it's not right.
No it isnt right, of course not. Care of chronic patients and the terminally ill has always been a dreadful weakness of the NHS since foundation. The reason is simple: the NHS is a heirarchy, and at the top, on the very big salaries, sit the heroic surgeons and top-notch physicians (protected by managers and teams of acolytes and junior a$$ l!ckers) - and the further away you get from "cure" and the closer to "care" the lower the salaries, prestige, and power and the more mundane care is consigned to low-qualified and poorly supervised minimum wage staff.
To put this into perspective is difficult, but I remember in the 1960's visiting an elderly neighbour, a single lady who had no family, in an old fashioned NHS geriatric hospital that was nothing but a rebranded Victorian workhouse - she had once been a civil servant typist, and she died of nothing much apart from shame, infirmity and neglect. Bloody shocking, but we still need to keep fighting for decent humane care for all older people, with or without carers or family.