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AMA

I was a young carer, now an adult carer AMA

19 replies

florenceswashingmachine · 08/07/2018 00:04

I'm stressed/feeling down and think this might be somewhat therapeutic .. ask me anything and I will try to answer!

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hendricksy · 08/07/2018 00:19

Who do you care form?

hendricksy · 08/07/2018 00:20

For

snowsun · 08/07/2018 00:30

Is the person you cared for as a child the same person you are caring for now ?

florenceswashingmachine · 08/07/2018 00:39

My mum and my sister, and yes still the same - slightly less for my sister as shes in supported living, a bit more for my mum now.

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Hundredacrewoods · 08/07/2018 00:49

I honestly wouldn't want my child or sibling to be a full time carer for me - they deserve their own lives and I would rather live with whatever meagre state care provision was available. Have they ever expressed a sentiment like that?

FissionChips · 08/07/2018 00:52

Do you find it difficult/upsetting when you are the one that needs care (when ill etc)?

I was a young carer too and I find it incredibly upsetting to be the one who needs looking after sometimes.

hendricksy · 08/07/2018 08:36

Wow that's hard on you , what needs do they have ?
My son has special needs and will never live alone . No way on earth will my daughter be his carer. I want her to have her own life and enjoy it .
How do you feel about your life ?

Carecomplet · 08/07/2018 08:55

Does your mum have physical health problems, or mental health problems, or both?
Was your education affected by your caring duties?
Was the school supportive?

florenceswashingmachine · 08/07/2018 11:10

Mum has both physical and mental health issues - a lot of mental health though. Has a diagnosis of BPD and 'hysterical' personality disorder but I am 99% convinced the latter is not used now, as its an awful name. Mum takes seizures, has asthma, temporal lobe brain damage, anxiety, migraines, arthritis, vertigo, depression and some cognitive issues.

Sister is severely autistic with severe learning difficulties. She's more agressive than anything else. She's in long term residential care as mum couldn't meet her needs. Not sure how permanent her setting is as its run by a charity.

My school weren't supportive until I was 17. One teacher was lovely and I used to sit in her classroom after school to do my homework. I think she knew there were problems. Primary school knew exactly what was happening but said they didn't want to interfere (years later).

I passed my exams however, and have a 2:1 degree somehow (uni were exceptionally supportive).

Mum has said she doesn't want me as her carer however social work have said v little they can do, if anything, and it isn't great. I have managed to move out but come back as often as I can (weekly or fortnightly) and phone all the time. When I'm home Mum's needs are huge and when I'm not there I know she doesn't eat well or take her meds regularly etc. There's no-one else to help really.

How do I feel about my life?

Worried - always worried. Scared of what the future holds. I want a family of my own, I want to travel, socialise, all sorts but I can't see how I can fit it together. I know if I did go on holiday or something I'd feel incredibly guilty. At the moment I feel I'm being left behind though - 27 and no partner or children - and worried in the future I'll be alone.

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florenceswashingmachine · 08/07/2018 11:13

When I'm ill - I find it frustrating as no-one to help me if that makes sense, guilty, and when I've been ill enough to land in hospital (which was 5 or 6 times last year) I felt almost relief, as I knew I physically couldn't do it - and the nurses tried to help sort stuff out.

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hendricksy · 08/07/2018 14:15

I do feel for you , what a awful lot for a small child to deal with . I'm glad your sister is in residential . I would like this for my son when I'm older as he isn't my daughters responsibility. It's one of my biggest worries to be honest . I don't want her life ruined . What triggered all your mums problems ? Where is your dad ?

florenceswashingmachine · 09/07/2018 00:07

Haven't seen dad in 20 years...

Mum's problems started from being abused as a child then raped in teens and in marriage unfortunately. Brain damage from head trauma and ECT that was wrongly done (too high a dose or something).

Yes, residential helps a lot - wasn't good when sister was at home as an adult , she could get very scary - lots of nasty injuries.

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Carecomplet · 09/07/2018 00:44

Have you been able to get a carer's grant from social services?

Would social services not commission care so that carers can prompt with medication?

What is the one thing which would have been helpful for you as a young carer? Is the young carer's charity amd the young carers team any help to you?
Shame on your primary school for not interfering Angry

florenceswashingmachine · 09/07/2018 01:04

Never had a grant no. University have given me money through discretionary awards several times though.

Social services are - oddly - 'satisfied all is fine'. Mum can put on a v good show and won't readily ask for help or admit there is a problem - doesn't trust social workers. Last review I was out at hospital appt that I couldn't cancel. Though I have phoned and asked if we can re review the situation asap...

As a young carer - I needed an adult who understood, was able to listen and care for me even if the responsibilities couldn't be lifted. I was 19 or 20 when a GP started to fulfil that role - ie substitute parent ... Only then because I'd had some sort of breakdown. She helped enormously though over several years. If someone had talked to me properly, asked me what was happening or tried to help it could have made a huge difference.

Young carers charity, they were good at times - did dozens of outings more suited to younger children but took me on outward bound at 17 and to a young carers festival once too. One of the senior workers was very, very good and took me out for coffee a few times at age 14/15 ish.

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elliejjtiny · 09/07/2018 11:18

How old were you when you started caring? Who cared for your mum and sister when you were a baby/toddler?

florenceswashingmachine · 09/07/2018 12:13

I was 5 when my dad walked out, 6 four months later. Dad frequently left me on my own before and told me if I wanted help to phone doctor. I think I did once and never again as the doctor was quite scary and shouted at my mum, in hindsight I think she panicked at a four year old phoning her.

Had some carers too - some were a bit dodgy and one outright abusive - and I was placed in foster care three times for hours, never overnight. Social were in and out but never did much. That stopped when I was 6. Once or twice relatives were phoned but not often as they 'couldn't cope'. Spent a week with my dad's parents once. Lots and lots of days in neighbours houses too.

When I did it on my own in evenings (as NHS 24 didn't exist) I got a neighbour when I couldn't manage it. My mum phoned a helpline most nights and one or two ladies on there helped me when she had seizures. Neighbour stopped when I was 11 or 12 , maybe a bit older?

Got a very short period of funded care when sister was v agressive , put mum in hospital etc, that was stopped when sister was moved out.

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hendricksy · 09/07/2018 18:05

That sounds awful , are you resentful of your Mum?

florenceswashingmachine · 09/07/2018 20:52

No, not at all... frustrated at times, but not resentful. Sometimes I go to my aunty's , she still has younger children, and I feel relief because I'm not aorrying about aeizures etc but not resentful.

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hendricksy · 10/07/2018 18:08

You sound like an amazing person !

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