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Report transcript in: ADASS East - Abbey talks about her experience as a Carer to her brother
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ADASS East - Abbey talks about her experience as a Carer to her brother
Please Report the Errrors?
I know some people might know me.
So obviously I work for a self advocacy organisation,
um, in East Anglia.
But I'm also a family carer for my brother, who is a couple of years older than me.
He's got cerebral palsy
and, um, learning disabilities.
And before that, well, obviously before I was working for a,
um,
I was a supported living manager in Suffolk,
so I've kind of got a whole array of different
come from different angles for everything.
Um, but I think the the the thing I'll start with is my brother's situation.
My brother's 24
he's looking to move out.
And with his friends, he went to school with, um as four of them.
And unfortunately, the process has been extremely, extremely long,
as we all are aware of.
Um, however,
it's getting to the point now where people aren't turning up to meetings that
have been booked months and months in advance for the transition to move forward.
So we're waiting three months for a meeting. The meeting is coming,
and then the person that needs to be at the
meeting to move it to the next stage is not coming
and it's happening
over and over again.
And it's excuses like covid holidays, school holidays, kids trips. And you know,
that's it's just it. It's
pointless now. I'm not so much involved in the in the
in the transition because my mum wants to do it
without me because I'm quite forceful and loud and spy,
and
I get quite annoyed.
Um, and my mom kind of wants to do it with my brother, which is absolutely fine.
Um, however,
she did refer for an advocate to help
her because she doesn't understand what is right.
Um, to be able to explain to my brother the process and what's going on.
She doesn't know what the process is, so
and she's got me to support her with that who kind of knows a bit about it.
Um, however, she did a referral on her own, and the referral didn't go
through, um, so that was kind of another barrier.
So she's sort of in this just horrific cycle.
In the meantime, my brother wants to move out.
Um, and my brother's looking forward to move out. He wants his independence.
Everything he does. He talks about independence.
Um, and my mom is horrifically struggling to cope.
My brother's happen to come and live with me at the weekends because my mom can't.
She wants to be a mum, not carer.
That's what she wants. She wants to be a mum. Now. You know he's 24
she's ready for that. And he doesn't want my mum to care for him anymore.
Um, he wants that independence, too.
So it's just it's a really stressful and upsetting
sort of situation for them to be in.
So that's kind of going on. It's not really moving anywhere.
So that's kind of like one
story.
So that's that bit,
um, from a advocacy. So my my job,
um, there's there's quite a few situations that have gone on
Um, and I I think, uh, one That's probably really stood out through Covid.
Um, was a
gentleman's support was stopped,
um, because it was deemed that he didn't need that much support.
Um, so through covid, it was stopped because of the risk,
and it has it started again in November,
but it had to be outdoors, and it was like, a couple of hours a week he got,
um
and it started outdoors, and then we went back into a lockdown.
I think November time, December time we had another lockdown. So it stopped again,
and now it's just on Zoom.
He just has
a couple of hours support on Zoom
a week, and that's it.
And
because he's got sensory, um,
disorders as well as a learning disability,
it's really he's he's finding it really difficult to to
work out why he's not getting the support he needs,
and it's just not very clear for him.
So he's just put an advocacy referral in as well.
Um, because he doesn't know. And obviously, we are a where
I'm not with him supporting him at his house to be able to to do so much.
Um, so that's kind of one sort of story that I think's
been quite
it hit out, really? That you know? And he does need the support. He does need it. Um,
and then another,
um, gentleman, he again is 20 seconds left.
Yeah, the last one. He's really independent.
Um, but he lives with people.
He lives in his own flat, but he lives in, like, a flat complex,
and he lives with people who,
um I think their needs are significantly more than his.
And he doesn't feel like where he lives is matched,
um, to him. And he just feels like that
for his young lad. And he wants to be with people like his his own age with,
you know, just a better match.
So he's sort of in a situation where he wishes that was different.
Oh, my goodness. Perfect timing.
Right? Stop. Now, how do I
There we are. Oh, fantastic. So
absolutely brilliant. You gave three really good but different examples.
I'm just wondering
if anybody has any questions for Abby that that
sort of have come up that you've thought.
Um, so my question was, as a sibling,
how well do you feel supported?
So
I suppose at the moment, um,
I don't live at home,
so I
kind of I'm quite OK now because I can kind of step out
of it and step into it as and when I I want to
um so for me, it's a lot easier now,
um, when I lived at home and it was hard, um, but I worked a lot as a manager in my old job.
I was at work, work all the time, So I was kind of out out the picture a little bit.
Um, but growing up with school, it was really difficult.
I was really lucky to be involved with Suffolk family carers.
Um, and I got a lot of support with them, and my schools were really good with, like,
I couldn't do homework at home,
um, and things like that. So
I couldn't do coursework and stuff at home.
I used to have to go in at school early or college early
or finish late at college because I just couldn't do it at home.
It wasn't
I wasn't an area house where I was able to do it in a safe and quiet place.
Um, but no, I I feel like now, um, my brother's also as he's got older,
his needs have completely changed.
Um, when he was younger,
he had quite challenging behaviour when he was sort of going
through puberty and kind of figuring out them hormone levels himself.
As was I,
um
So when we were younger, it was kind of like a bit tense,
but now he's he's pretty chill and, uh, support wise.
I don't live with him. So,
um, I can
kind of leave when I need to leave, and and then equally,
I feel like I'm more able to help my mum now more living
away from my mum than when I was actually living with my mum.
So I I'm in,
and so maybe this will lead into my four minutes, but I'm in this.
I'm in this situation where my daughter is three years younger than my son.
So she's 32
she wants to be involved in her brother's life.
She has cared for him throughout her life, on and off,
and even being one of his support workers
when she's been at university. So
what? I've what I've noticed and what I've been.
I'm concerned that
so the the
commissioners don't really understand that you you're
the next generation in that person's life.
You're more likely to be around longer
than um
than we are and how they're going to support you. So there's lots of carers
platforms out there for parents of Children
have dementia or Parkinson's at the other end of life. But
you're a totally different generation
and have totally different relationships with your siblings.
Some of which could be close physically.
And, um, actually, you know, logistically,
um, mentally, you know, emotionally, some could not.
And and there's a whole group of people who need
to be supported in the next part of the journey.
Yeah, I do agree, and and actually, I I
have thought about things, you know, there are the things that do restrict me.
I you know, I can't go and live the other side of the country because I've in my head.
I've got to stay here because I've got I'm part of Jack's support network.
And if anything happened to my mom,
I've got to step up and do that because he needs that.
Um, so it definitely does
Just think about your way of life and every situation you're in, but there isn't.
I agree. There isn't in terms of, like a sibling.
Um, you know, taking on that role or as an adult,
there's the support isn't really known.
Um, but I would probably just cast myself as a as a family carer, as I do now,
and just reach the support as my the same support as my mom would reach.
Um, but I don't think There's really, like a separate, especially not around here.
There isn't a separate, and I think that's
the same through staying there.
And I think I think for my daughter she never
want to acknowledge that she was a young carer.
So she wasn't on that.
There wasn't so much profile for a start because she's 10 years older than you,
probably, and,
um,
and also she didn't want to acknowledge that her brother, she was disabled and
have that kind of, um,
have that kind of support. She actually hid away from that, Um,
so she's not on any.
She's not even, you know, had had, um, a platform before,
and there's definitely nobody out there.
I know there's
sips in the North and we're starting to see it, but I wonder about locally.
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