| Name |
Your Story |
Kia
|
# Posted: 27 Apr 2008 11:17
Reply
I\'m not quite a pensioner yet, but will be 57yrs old this year & am a lone parent caring for my 22yr old son so I hope my posting here is acceptable.
I\'m a fighter & one way or another have fought all my son\'s life for his needs to be met.
I don\'t want to go into lenghy details, as carers you all know what it\'s like to get the system to meet ANY needs.
Yet here I sit, a 56yr old mother, 5ft tall, disabled myself & caring for a young adult male over 6ft tall. He has multiple disabilities & a variable condition that sometimes confines him to a wheelchair or crutches for months at a time.
He gets depressed & sometimes tries to kill himself or begs me to when he\'s not physically able to attempt it himself.
I\'m a strong lady, but nowhere near as physically strong as I used to be. Trying to wrestle a knife from my son\'s hands is only possible because he\'s a gentle soul who would never harm anyone but himself & he doesn\'t want to inadvertantly hurt me, so, to date I\'ve manged to stop him without injury to either of us.
He\'s tried to hang himself, taken homeopathic pills that he didn\'t know were homeopathic, tries to self-harm etc.
He\'s partially deaf with learning difficulties. mild cerebral palsy, night blindness (possibly Ushers Syndrome) & has a condition they don\'t understand so they\'ve labelled it as psychological. It disables his central nervous system causing all manner of sensory, motor & visceral symptoms. This includes bi-lateral paralysis of limbs, hence the wheelchair, non-epileptic seizures that can last for a few seconds to a few hours & syncope to name a few.
He has periods where the symptoms are always present but mild & can walk unaided & do various things for himself, but he can never be alone as it can change in a heartbeat.
His dad left 8yrs ago & hasn\'t been seen since, so no support there.
There\'s much more but I\'m sure you get the picture.
To date, he\'s been with the physical disabilities team & the learning disabilities team. Mental Health team won\'t accept him because we refuse psychiatric admission & ant-depressants. These are not the answer & is finally understood by the powers that be that it will harm rather than help. Only took 8yrs to get them to see & admit that!
Physical disability Care Manager was useless & objected to my son having Direct Payments.
Learning disability team have dropped him because he\'s borderline.
He falls through all the gaps in this damn useless & degrading system & is now without a care manager/social worker. We\'ve been left high 7 dry.
Neither of us receive any direct payments, respite care or support of any kind. Family live mostly in London & I\'ve no social life or friends that can support, so we are literally coping alone.
I was rushed to hospital once & should have stayed there but had to discharge myself as soon as the haemmoraging (I know the spellings off but hey) stopped to pick up & care for my son.
I love my son dearly & if anything happens to me, I know my son\'s life will be over. I know how James Hughes mum must have felt because sometimes I think it would be better if neither of us existed. No more pain & loneliness can seem like a blessed option. Mere existence is what many of us are experiencing & I\'m fed up with politicians & the welfare services sitting back doing nothing practical to help us.
How can I keep fighting for our needs to be reasonably met when I\'m caring 24/7 & constantly exhausted & in pain?
|
Rosemary
|
# Posted: 28 Apr 2008 12:23
Reply
Hi Kia,
Sadly what you are experiencing is becoming more common as time goes by.I dont know if you have joined CW forum so please take a look at this... http://carerwatchdotcom.myfineforum.org/index.php .You will recognise some of the names there .
|
Dugsie
|
# Posted: 28 Apr 2008 12:25
Reply
Hello
A lot of us here will understand what you are saying. Some, I hope, will know more about possible help than I do.
Who do you talk to ? It's important to make your feelings plain to everyone with a responsibility for your situation. Like you, I expect little from such people, from your GP onwards. But they need to know before there is any chance of help.
Carers UK might be a useful source of advice.
|
Cheryl
|
# Posted: 28 Apr 2008 14:10
Reply
Hi Kia
Do please come and join us at the carerwatch forum addy that Rosemary posted.
Its entirely wrong that you should shoulder all the responsability yourself. You said in your post that
"Physical disability Care Manager was useless & objected to my son having Direct Payments."
It surelyit isn't any of the care manager business which help or benefits you apply for, and the government are particularly keen on people taking up DP's and Individual Budgets, I'm sure it would be worth looking into again without the care managers interference.
.
|
Michael
|
# Posted: 28 Apr 2008 15:49
Reply
Hi Kia
You are in a very difficult position here, you might have tried what I am about to suggest, but you do need some help, what you need to do is to get all the services together, you do need to get the mental health team involved, but I agree with you anti depressants are not the answer, now unfortunately the way to get into this whole system now is to go into A&E outside of normal hours and demand to see, the people you need social worker included and the hospital social workers are better than the outside ones. Please do not allow yourselve to be bullied, I know this is all wrong but you have to get the all the agencies involved together and make them work together. I hope this is of some use to you.
Michael
|
Kia
|
# Posted: 20 Jun 2008 07:12
Reply
Thanks for all your support & suggestions,
Forgot I even posted here so have only just read your responses! Blaming it on joining several Carer forums in recent months leaving me befuddled :-) My story, sticking to it!
Also confused as to why I've posted here as Kia & on the forum as Rose51......As Homer would say; 'Doh!'
Anyway, the story so far:
I tried a long time ago to get physical & learning disability teams to act together. Was told this is not possible. Have since found this is yet another barefaced lie.
It really is a lottery as to whether you get someone decent to assess & recommend funding for proper support, followed by a lottery of whether or not a decent Care Manager is appointed.
Cheryl said;
"It surely isn't any of the care manager business which help or benefits you apply for, and the government are particularly keen on people taking up DP's and Individual Budgets, I'm sure it would be worth looking into again without the care managers interference."
When I originally contacted Surrey Independant Living Council who deal with Direct Payments in our area they were for it, but my son's then & useless Care Manager (PD team) tried to prevent us from getting it.
Then he was transferred to LD team in a bid to get better services, then dropped, without getting any services in place, as I said for being borderline IQ.
His IQ is 70. It was 70 at age 14 & 70 at age 21 when they re-tested him. One digit less & he's ' learning disabled' but at 70 you're classified as merely having a 'difficulty.'
Since then Surrey CC have reduced SILC's funding by £100.000. The lady sent recently by the SS to assess my son was an obnoxious cow, & for me to say that means I'm hopping mad, & tells me we won't get it & that 'everybody wants money.' !!!!!!! You don't say!
Tried for several years to get a social worker from mental-health & had to go through all kinds of hoops to get nowhere & nothing, they were however very willing to offer ME counselling!
It wasn't till he tried to kill himself again last May & we ended up in A&E that mental-health began to take it seriously, but NOT seriously enough to appoint him a Care Manger. He was instead referred to counselling services via our GP practice & when I complained I was told I'd have to go through yet more referral processes!
How & with what energy when my son's paralysed & once again totally dependant on me for feeding, dressing, carrying etc 24/7?
Then 2wks ago, totally out of the blue & by some clerical error it seems, I got a letter from a Mental-Health Care Manager re; an appointment for my son!
We met, I explained all of the above & how it was affecting my health as a Carer & thereby increasing my concerns as to 'what will happen to my son if?'
She was absolutely lovely, very understanding & intent on supporting us BOTH in securing support AND Direct Payments!
So my son now has an MH Care Manager by accident rather than design. Life is weird at times.
She told me that different teams can & indeed do work together & was disgusted at yet another story of people being lied to by SS staff & left to suffer.
As for the 'obnoxious cow' I've spoken today to SILC who are annoyed at my being told I won't be able to access DP for my son for the purposes I've put forward. They asked her name so they can speak to her & I'll be writing a letter of complaint to the Director of Adult Social Services.
I refuse to have that woman in my house again! She upset my son by saying; "Well you can't just sit at home & do nothing can you!" & annoyed me intensely with her incapacity to understand the simplest things. We'd made it clear that he doesn't sit at home doing nothing unless he's wheelchair bound & physically incapable,
So, there it is. We may get some support after all, though it'll take a few months to set up I'm sure, but at least we're finally getting somewhere. The fact that it's happened 'by accident' & error is a hoot!
Will keep you posted & thanks again guys for your practical & emotional support.
Kia....or Rose51. Your choice :-)
|
