26-08-2009, 09:21 PM
1
Caring for your kids
I`m a full-time carer for my son (he`s grown up
) who has schizo-affective disorder. His medication doesn`t really control it too well (he`s what they call treatment resistant, which means the drugs don`t work properly) and so it`s a bit of a roller-coaster here sometimes. Luckily, after much stubborness, kicking and shouting on my part the NHS Trust have put him under a special team who work closely with him (and me) to keep him going. He`s been out of hospital nearly 2 years now, which is a record. Unfortunately the stress has also affected my youngest son who has become quite reclusive. They seem to rub along all right so I`m hoping when I`m gone they can support each other. My dogs keep me sane and my painting is my `escape`. And I get my own support worker who pops round every so often to tell me her troubles
.I`m also lucky in that I`ve got a close circle of friends - lovely ladies all - and we are all there for each other. So I`ve got my own little support network.
Is anyone else a carer for their kids?
29-08-2009, 12:15 AM
2
Re: Caring for your kids
My sister cares for her daughter who is disabled - so I know how tough it is Claire. I really dunno how you guys do it :-/ My sis has to get up at 5am to give her daughter medication (who's often up throughout the night too), and then get up for work at 7. My mum then takes over until my sister gets back home from work. She basically doesn't stop - I wish I lived closer so I could do more to help :/29-08-2009, 08:30 AM
3
Re: Caring for your kids
Originally Posted by claireandaisy
->
I`m a full-time carer for my son (he`s grown up ) who has schizo-affective disorder. His medication doesn`t really control it too well (he`s what they call treatment resistant, which means the drugs don`t work properly) and so it`s a bit of a roller-coaster here sometimes. Luckily, after much stubborness, kicking and shouting on my part the NHS Trust have put him under a special team who work closely with him (and me) to keep him going. He`s been out of hospital nearly 2 years now, which is a record. Unfortunately the stress has also affected my youngest son who has become quite reclusive. They seem to rub along all right so I`m hoping when I`m gone they can support each other. My dogs keep me sane and my painting is my `escape`. And I get my own support worker who pops round every so often to tell me her troubles
.I`m also lucky in that I`ve got a close circle of friends - lovely ladies all - and we are all there for each other. So I`ve got my own little support network.
Is anyone else a carer for their kids?
They constantly are battling down doors to get even the tiniest bit of help.
My hat goes off to you and all who are in this postition...
29-08-2009, 03:01 PM
4
Re: Caring for your kids
I am glad that you do feel well supported Claire. It's very hard - and really good that you are able to get away on your own for a break.My trouble is that OH and I are unable atm to get a break from caring for his mum - she won't go into any sort of respite care and it's too expensive to have a carer in full time. Sometimes I feel like I am a prisoner in my own home. My cats keep me sane.
29-08-2009, 04:04 PM
5
Re: Caring for your kids
Our Council Social Services Dept. offer a `Carer Assessment`, and then you can be liable for help. Have you approached yours? You should be entitled to something. Even a couple of hours a week is a lifeline, I find. The council pay for me to do something for 2hrs each week as respite - but I imagine they might pay for someone to come in?
30-08-2009, 11:33 AM
7
Re: Caring for your kids
I`m nowt special - the reason I chat about it at the drop of a hat is that mental health service users and their carers are so hidden. Even the families rarely talk about it. I have had people imply that I shouldn`t take my son places because he`s ill etc. And that`s one of the reasons people with mental illness die early, or end up in prison.Sorry - bee out of bonnet now.
05-09-2009, 07:03 PM
9
Re: Caring for your kids
Hello to all and Claire this is a good thread. To those who "care" I take my hat off.My nephew is 16 in January and is autistic and has learning and behavioural issues. He is unable to attend a mainstrem school and my sister and her husband have never had a night away since he was born. He is a twin, his sister is fine no problems if anything a little to smart for her own good
. And the twins have an older sister by a year, again fine.So my sister had her hands full from day one three children under 14 months. Then Jack was diagnosed at 3...yes his autisum is that severe.
Jack (nephew) has never been left with anyone other than my Mom and Dad and myself in his whole life my parents now in their 80's, late 70's are unable to care for him now even for short periods of time. But when he was at school they were invaluable, and my sister would not have got through without them.
Now I step in when needed they try not to ask to much, usually the girls school meetings and occasional shows (school based) for the girls and hospital/doctors appointments. And once a year they take the girls to the pantomime or disney on ice or now for a meal at start of December so they do not feel left out. Jack can't do resturants or crowded places this has got worse since he has got older.
He leaves the school he is at when he is 18 and they are looking for "supported" schooling/car for him at a residential home which he will attend till he is 25. To try and help him adapt to living, without his family. It is far from easy getting help although I remember going to a meeting about Jack when he was 8 and they were deciding on the next course of action schoolong wise (social services/care workers etc) and we sat in the waiting room they came out and my sister and BIL stood up spoke to the care worker person and as the meeting was open to those who "cared" for the person involved, Diane (my sister said) its our turn...and 24 of us (including Jack and his Mom and Dad) stood up...emptying the waiting room. His two grandads, one grandmom (BIL's Mom had passed away by then) 4 aunts (including me) 4 uncles. 4 aunts in law 4 uncles in law. And two sisters. We often went in groups of 6 or more...family means everything, and its often a shame to see the children in the schools he has been in dressed shabbily, uncared for, out of fashion and when you ask why you are told by their "family" they don't know any different.
24-12-2009, 03:36 PM
10
Re: Caring for your kids
my god!! after reading this thread i know i have it easy, i will never moan again thats for sure.i am sorry to hear how difficult things are for you all
you are such very caring people here and it's nice to talk to someone who knows what you are all going through, even writing it down is a great stress relief for me anyway. all your stories have touched me as i realise my life aint half as hard as some of yours here.
Bless you
Karen xx
|
|
