To think Young Carers should NOT exist and wonder why we are accepting this?

[OopsDearyMe]

I was thinking about my own situation and after seeing the comic relief story about the young carers group. It got me thinking, Why is no one in uproar that children are doing the jobs of social care workers.

If you are elderly and need help, you receive a care package and a carer assigned to you, who visits the home and helps take care of you, yes ? As it should be!

Then why if you become disabled at a younger age, do you not get the same?

Children who work, do so under strict guidelines, if you made your child do the things young carers do, as an able bodied person, you would be seeing social services pretty soon..

So why are we and the government ignoring the fact that thousands of children are doing the jobs an adult carer should be doing?

AIBU to think this is all wrong!

I am not saying the money should not have gone to the charities helping young carers , as I know they do a really important job. But I would prefer the money paid for a carer for the adult, thus preventing any child from becoming a carer in the first place.

NB: I Understand that currently we haven't got enough carers for the elderly let alone anyone else, which is why this happens, But surely this is because the government isn't being pushed to make changes. People seem to say"Oh how sad" and move on..

It can put a lot of pressure and guilt on young people as well. I had both parents with MH issues and was told when i went to uni I was 'running away. They weren't my responsibility though. They had been through divorce and very needy of me but it would have ruined my life to stay.

It can be abuse in some cases. Mine fell apart when i left and begged me to leave and come back. Like the boy mentioned above caring for MS parent.

It definitely can be used to abuse in some cases, I don't deny that at all, I just don't think referring to it in blanket terms as "it is abuse to have a young carer" is helpful. Sorry to hear you went through that

There was a very sad documentary years back about YC's . They were all caring for their parents who had varying degrees of physical disabilities/impairments. There was a boy around 11/12 whose parents both had arthritis and he would come home every day and cook dinner, clean and do some personal care for his mother. He spoke of how he couldn't play outside with friends, often didn't get homework done etc because he was so busy meeting their needs. The sad bit was his dm didn't seem to be sorry for him, she very much felt it was his duty. There was a scene where she was munching through a tin of chocolates in front of the TV and shouting at him to hurry up with dinner. He had no childhood at all and she didn't seem to give a toss.

Thank you to those who said nice things about my children. They are total sweethearts and have a heart of gold. They're the children in the playground that help those that are upset or being picked on, I saw it first hand on a day at school for parents. A girl was upset, she was the sister of someone in his class, my DS comforted her and did activities with her. We made beaded bracelets.

I'm a bit of a softie myself, so it makes me happy that they're caring. I hope what I've written helps others, as I think hopefully it could give ideas on how they can alleviate the burden on children if you rely on them as a single parent, as a few people seemed to think I had it made having a DH, which isn't the case at all.

Those who are attacking me as I have this glorious benefit of having DH. Stop one second! My DH works full time, in a job he's worked very hard at. He and the children are up at 6am out of the door before 7am and don't return before 6pm. Sometimes later if he has to grab something.

He has a long commute every day, he then works very hard. Then gets home, picks up children from a relatives. Certain nights of the week one of them has an activity, so he's in the door, they get changed, then out the door again. DS has his homework checked, both having reading at home, then watch TV or play together on the computer. Certain nights they'll have a bath. On nights with activities they're not home till say 8:15pm so it's straight to bed. When the children have to go to bed, they sort their clothes and kits for the next day, have a story read, I read to them downstairs too, then he can change out of work clothes to relax and grab something to eat.

Meals are made to last for lunches or for further evening meals. I rely on my brother or neighbour for help. Otherwise I'm lay on the sofa sleeping or in pain.

DH at weekends has stuff to do, washing is sorted on a Friday and dried through Friday night, Saturday day. The house is hoovered and cleaned in the day more thoroughly than it would be of a night. DH sorts his lunch, washes the pots before sorting my meds out for the night, gets me a hot water bottle, checks I have everything I need, we change my pad, set up my feeding system, which is temperamental to say the least. Make sure I put more deodorant on, plus caring for wounds. So bedtime, bearing in mind he's up at 6am is midnight usually.

Sunday is usually more chilled, but there's a big emphasis on a family meal. So that's usually prepped Saturday night, ready to cook Sunday afternoon. Then washing, prepping weeks lunches, in Spring/Summer/Autumn, gardening as fruit & veg is grown. So sorry every night DS will water the plants and check for problems. There's maybe an hour where he sits down, then it's bed time again, clothes are bought down to be ironed.

It's taken 3 months of constant coercion to get me to take a bath as it's painful and difficult. I've just had a bath where DH encouraged me to do lady stuff and shave. Then find clothes to wear. I'm sat here whilst talking to him whilst he sorts out the washing & his lunches. I feel bloomin' fabulous.

So no having DH here doesn't mean I have a better lifestyle than single people. Yes someone does the cleaning, yes he has encouraged me and helped me to bath after 3 months of using feminine wipes, a flannel, soap and water. Which has been a routine for a long time. I don't go out so don't worry about washing my hair, DC will brush it & put it in a pony tail. Because of my illnesses my skin peels, so he bought some scrub like stuff to exfoliate my skin, he did my hair, back, places I couldn't reach. Yes, if it wasn't for him I wouldn't have bothered shaving. I honest feel like I sparkle in clean clothes, freshly bathed. DC enjoyed a new keyboard and mouse we got so hopefully I can use the computer.

If I didn't have DH, I guess DS would vacuum, both DC would share washing up, sorting clothes, washing them, then putting them in the dryer. They argue over who gets to clean the worktops and polish. They argue over whose turn it is to do my hair and wash my hair over the sink. They do things like put my socks on, put creams on, it's all voluntary. As long as they had pocket money, I'm sure cleaning wouldn't be an issue. They get pocket money anyway, plus money into their savings accounts. They get treats from Grandparents, plus others. I support their interests, with DD encouraging her in new activities so she can find her niche.

I have a lot of care needs, but I'd never want either child to be involved intensively. They may fetch catheters, print off fluid charts, ask if I've had a drink, put the kettle on, fetch boxes of tablets like paracetamol/ibropufen/ranitidine/rennie etc. Nothing dangerous.

I spend a lot of time on the sofa, it's not the most exciting of lives, but that's my life. I hope to be able to build my stamina so I can do more than I do now. Even then it would be aiming to do things whilst either lay down or semi reclined. I feel nauseated quite a bit and vomit, so I have emesis bags, then I have a bucket with a lid I put the bags into once sealed. I make pads that I infuse with essential oils to take away any smells, but there isn't any really. We also have plug ins, those glade squirty things.

If you plan well, you can have a table next to you with a few containers with everything you need. I can take my meds and forget immediately I've taken them, especially PRN meds. So on the cabinet next to the sofa, I'll mark that at 'x' time I took say 2 paracetamol. My catheter gets emptied in the morning and night into a bucket that then gets poured into the loo and steralised.

I believe with planning ok you may need a 'bit' of help from your children, but you should be able to plan and organise so the onus isn't on their spare time, or time when not at school, waiting on their single parent. Most people can play the woe is me game and get the minimum which is a council employed cater coming once or up to 3 times a day. Most people on FB I've seen over the past 5 years, if not more, get at least 15 hours direct payments. Even with 10 hours direct payments you can achieve a lot.

I fell asleep on the sofa in a weird position with my hands entwined. It took me 10 minutes to move my hands, my joints were stiff and the pain was severe. I have to be careful about pressure sores. So if it takes 20 minutes I'll move ever so slightly so a different area bears my weight. It takes that long as I can't have someone roll me over, it'd be agony, it has to be done mm by mm.

You can get the council to pick your DC from home and drop of at school and the opposite.

As a single parent, you should get free school meals, so all they need for tea is a sandwich. I'm not so prissy that I'm above my children having a microwave lasagne, macaroni cheese or similar for a meal. Although it's seldom necessary.

In my mind at most, your DC may have to get their own breakfast. Your Direct Payments carer, or SS carer can make sandwiches your DC can eat. Unless your DC have been down a mine, they need 2/3 baths or showers a week. They may have to get their uniform ready and get dressed. They may have to do the odd task, but nothing like I have seen where before school and after they have to dedicate all their time towards their parent.

With the Direct Payments all your needs should be met. Yes some people don't have families close by, but people aren't such bastards that they'd let a really ill person live in squalor. Someone would come and help if needed. If you asked someone would do what they could. My neighbour checks on me and has said anything I need, I only need to ask.

If you're really unwell your GP would arrange district nurses if required. They would support you claiming DLA/PIP and ESA. You'd get housing benefit, council tax benefit. I've recently applied for ESA and they explained if you get DLA/PIP you get extra for extreme illness. So a considerable amount. You could pay someone to help out. I'll find out specifics and get back to you. I will show how you can reasonably live.

I want to try and help as much as I can.

Fairytales Your optimism is lovely but again, you're missing the flaws in your plan.

In some areas, the care doesn't exist. It's been cut to the point where it's either non-existent or impossible to get. Particularly where mental health is involved, people would let someone live in squalor. I grew up in a village where mental health was swept under the carpet and taboo - and I'm not talking decades and decades ago; I'm 22. A village full of holiday homes so there isn't even any guarantee that you have neighbours, let alone ones who'd help. Family who don't want to know because they don't understand mental illness either.

DLA/PIP and ESA aren't going to cover the cost of private care on top of other expenses, not when people are already living hand to mouth on what they have.

Your DH is out most of the day, but when he comes home, he CAN help. Even if only with the emotional side of things. Where both parents are ill, or there's only one parent, there isn't that luxury - and it IS a luxury.

And on top of all of that, having a carer come in three times a day will do nothing for a lot of people with mental health problems, who will be exacerbated by the presence of a stranger. When the paid carer goes home, the young carer picks up the pieces.

It's good of you to write all that down, and I hope it is useful to people in a similar situation to you who read it, but it isn't the foolproof formula you seem to think it is.

Cherries Ok, you are entitled to think I'm critical because I challenge this idea that it's passable for society to say "oh it's so terrible, oh it's so sad" without doing anything to prove that their words have meaning. Some people on here have incredibly critical about the most vulnerable people and, in particular, quite specific situations. I wasn't saying "look at what I do" but perhaps you wanted to have a little dig, even though my post was directed at multiple people on here and not you. My job (and yes, it's a job, I'm not Mother Theresa and I did make it clear) means that, statistically, I have probably met far more young carers than many people posting on this thread. Therefore, like it or not, I do have a decent grasp of the support people with disabilities need and the basic needs of carers, both young and not-so-young.

I was suggesting the things that could be done if people really cared as much as they say they do. To be honest, it's fine if you (as in one) have certain issues that matter more to you than other things. There are things that matter more to me but then, I don't make a song and a dance about things that I don't really understand or have a passion for such as; environment.

Fairytales "With the Direct Payments all your needs should be met."

I don't know whether to laugh or cry at this. The cuts to the social care budget meet that basic needs are not being met. There is also a care crisis. Nobody wants to be a home carer working for minimum wage. The agencies often treat their staff poorly and it isn't a valued career, whereas it should be. Therefore, in many areas, you will struggle to actually get care.

Can you open your mind a bit and see how/why people live in squalor? How a person with chronic and undermanaged schizophrenia and severe arthritis may not have any support network? You're living in some nice little utopia where everyone has a neighbour or a somebody to pop out for milk. I'm not even talking about parents here, just the needs of ill and disabled people generally.

You have a lot more support just by having a husband even if he does work all day. He does a lot for you. You know he's there. His income supports you. Please don't think it's in any way the same as being totally alone. Some people are really alone and it's very sad. It's also not that uncommon.

District nurses and GPs can't and won't generally support with benefit applications. They are under immense pressure, so there is no criticism from me on that part. CAB can help with this. Some charities in certain areas also are able to support and/or have guidelines available online pertaining to an individual condition.

Having said all this, there is no way I'd allow my child to do any sort of care for me. However, certain ideas on this thread and so far off the mark.

Just to add that it's people with cognitive impairments, neurological illnesses, brain injuries and mental ill health that tend to carries the highest levels of risk to themselves and children, especially when parenting. Parenting with a physical disability (I do this) has challenges but it's comparing apples with oranges. It's not the same and cannot be managed in the same way. I think people who have severely fluctuating conditions probably also struggle much more and in a different way e.g. MS - highly functioning during periods of wellness and very ill and impaired during relapses.

Ovaries I'm truly sorry you're experiencing what you are. DH & I exist together, yes I do have the luxury of his help, like bathing today, but my reality is going to be that of a single Mum in the near future. Just to get that out there.

I think it's something that is perhaps overlooked, but persons who are severely incapacitated, do experience mental health issues. When you get referred to a psych or the crisis team, they identify that the cause is pretty much circumstantial. So no magic pill is going to take away the anguish, anxiety and depression, because the root cause is circumstances which would impact even the most stoic of persons.

Do you think you would benefit from a thread where you speak to parents who without adding labels, are incapacitated, so you can build friendships and relationships with others? It might help you to be able to talk about things and share experiences.

Maybe I am naive and have placed myself in a bubble, where situations are black, white and a few shades of grey. Do you mind me asking what your MH issues are? If that's not to personal? How old are your DC?

I had experiences in my childhood, which has led me to want to parent in a particular way. I think and want my children's experiences to on the whole be positive. I can't think of a situation where I would allow myself to be a burden to them. I know by being unwell I add stresses onto them, but I work to reassure them, I work to create a positive environment for them, plus they have support at school.

One example, I could be in agony and have various stresses, something may happen that makes my mood plummet further, but I would never cry in front of them. If it was say a family bereavement I may, to show them it's normal to get upset in those circumstances, but on the whole, I try and keep a lot of what I'm going through to myself. I'm not saying this is possible for everyone, this is just me, we're all very different. We all have different expectations when it comes to the physical and emotional environment our children live in.

I worked out every hypothetical situation, with regards to benefits. If you weren't getting support from SS, via Direct Payments or Social Care, could you not spare an amount to employ a cleaner? Can you not say to your DC, OK you need to clean up your toys after playing with them, but other cleaning like basic house care, be something you advertise someone to come and help. There's also SureStart I believe, who offer support via volunteers who visit to help.

If a thread where parents in a similar situation would help, please let me know and I'll start it up somewhere.

Two of my dc are young carers the third has sn and I became disabled following illness. I hate that my dc are carers. I make sure they do very little caring, the eldest makes drinks, runs baths for his siblings and supervises them. He does no personal care but I'm lucky I have a dh who is a star. I'm determined he will go to Uni. Young carers is great. It's 2 hrs once a fortnight where the eldest particularly has no caring responsibilities.
It would be lovely if there were more help but that costs money and this is not something most people care enough about to pay more for.

Young carers ime are not normally wiping their parents bottoms or running the household I'm sure most are just aware that their parent/sibling has needs that impact the family financially, emotionally or both.

I previously said my child was classed as a YC but does no caring. I do all the caring for the disabled person in our house, but if you live in a house with a disabled person ad a child, there are certain emotional and practical demands that dont occur in 'healthy' households. For example if disabled family member requires a lot of hospital treatment, the child will usually be visiting hospital regularly, which disrupts routine. The child will also worry about the disabled family members health and this will have an impact on them.

So in short, my child isn't wiping bottoms, food shopping or doing anything outside normal chores for an average child (such as tidy own room and clean their own mess), but sometimes their routine is disrupted due to illness and they carry around their worries about the disabled family member.

FWIW - there us no neglect, poor parenting or substance abuse in this household. Our parenting is good actually (as described by others). Disability can happen to anyone - including people with children. So it would be wise to stop and think about this before blithely labelling all parents of YC as rubbish parents. Most parents of YC will be trying to make life as normal as possible for their children, and not leaving the children to bear the brunt of illness, but as parents you cannot protect your child from the emotional toll having a disabled family member causes. Surely trying to access support for these children is a beneficial thing, not a negative one.

I have lobbied my MP about cuts to our local YC funding. I have not received a response back.

Lynn - I'm sorry to hear you're ill, it's really not nice is it. I'm lucky DS has a big brother/protective relationship with his sister, she really looks up to him, so they'll happily play on the computer without trying to kill each other. Do your DC get help at school / do school know what they do? If they don't, most schools have a provision for children who / children of ill parents, which involves counselling etc. I'm assuming our LA don't provide the social element your hear about, but you might be lucky and have that provision in your LA. Your eldest sounds like a total star, bless them.

Are you studying now, or is it something you'll be doing come September? I ask as my experience with work / further HE, is they don't cope well with chronically ill students, even if you've got a care plan, which it appears few lecturers read. Can I ask what Uni you're at or planning to go to? What are you planning on studying?

With the old fashioned system you'd get your loan, the a bursary for the children, bursary for any dependent adults, childcare provision similar to tax credits, plus the disabled students Allowance, which allows for stuff to be bought that helps, plus a note taker / someone to help around campus. You get your internet paid for usually, plus a provision for books and photocopying, but you have to send in proof now, where before they'd pay it before hand with the rest of your money.

They can supply ergo chairs, desk, computer, printer, other bits depending on your degree which is why I asked what you were studying and where. If your OH is dependent on you, there was a separate bursary for them. It was easier in the LA days to now, where SFE deal with everyone, which elongates the process.

Good hints and tips are get a few self certs, so if you're ill less than a week you can cover yourself. Some places are strict on attendance, even if you're ill. Plus they can provide a taxi for you to get you to Uni & back.

Does your illness cause symptoms that might affect attendance? If so get in touch with the NUS head disability person as a contact, in case you ever need them. You might find because reps voted by students are students, they don't like rocking the boat, therefore are useless.

If I can help in any way with info I will.

Barbara -Im sorry to hear about your situation, glad DC gets the help they need. You're right they do worry, it's good to have third party support. DC will visit me if I'm in hospital, you can tell for DS they have a lot of questions, where DD is her normal self.

I'll email my MP about support being cut, but I honestly don't think the government care overly. They've made concessions for social care, LA's charge each household an amount for it, but you have to be an expert to be able to access it.

Can I ask was OH poorly before you met them, or something that came up after? How do you cope yourself? It'd be interesting to get that perspective.

to both of you

I was a young carer Fairy, that's where my perspective on all of this is coming from. Two parents with physical disabilities and severe mental health problems.

My experience is very different to what you're saying. I've posted up thread about how horrendously unsupportive some schools are; this seems to be fairly standard in many of the young carers I spoke to over the 5 years I accessed YC services online and in person.

I hope the most caring DD will ever have to do for me will be to nudge me to take my meds, although I suspect she has ADHD too so we may be as bad as each other

I was suggesting the things that could be done if people really cared as much as they say they do.

How would a person go about volunteering in a situation like this?
Supposing I was willing to give up a couple of hours a week to help a family who is struggling in this way, who/where would I approach?

I think I've seen schemes where you can go round and help elderly people on their own, but not so much families with children.

Disability isn't a lifestyle choice. You don't get to decide "oh right, time to be disabled and pile it all onto my kids". It happens to you whether you like it or not.

When I had my children I was between 25 and 30 years of age and in reasonable health. I was deaf but that doesn't impair my parenting in any way, I was hypermobile but with rest I recovered.

I didn't actually become physically disabled until 2 years ago. To the extent that I need help with some things and use a wheelchair outside. But DH does that and the reason for that is that the kids are disabled themselves.

I'm still a carer too. I help my children understand the world around them, I advocate for them. I make sure they get the best education possible to meet their needs. I stay awake some nights keeping watch over them to keep them safe as they could do dangerous things on their own (shared with DH). I look after their medication, ensure they do Physio and OT programmes where necessary. If they need equipment I'll sort it. I still do well over the statutory 35 hours a week. There is so much I can still do and I do it because they're my kids and they deserve it. DH has to do more 'hands on' type care and pick up slack on bad days but since direct payments and being able to get a few hours' break every week and a cleaner we manage. I don't think any of us goes without.

People do not just decide they will have children to look after them. Disability happens, the unexpected happens too, I know this having gone in for a simple procedure last week, experiencing internal bleeding and having to have repeat surgeries. I'm only just home and not at all well but this was the last thing I'd have expected last week. It was routine, couple of days' rest and onwards..... no.

It could happen to anyone.

Young Carers shouldn't exist but they do. And what should be happening is that local authorities should be putting in more care to prevent that being more than just the basics - picking up prescriptions, maybe an online shop. It shouldn't be down to Comic Relief to raise money for this stuff.

But then care in this country is so horribly devalued anyway.

Brickinitlam try Home Start for under 5s or your local authority will run a scheme for respite - contact the disability team.

Thanks, Bishop.
I've been meaning to do some volunteering of some sort for ages now. This may give me the push I need.
I will look in to it.

I've watched the volunteers video and have the Home Start Contact Form ready to fill in.

Should I? Shouldn't I? It's quite scary. what if they won't like me

I've had operations and needed a drain, which was removed when there was still bleeding, I ended up with a rotting blood clot which was really painful.

I don't get the new obsession with hypermobility & EDS. Years ago it was called being double jointed, you'd find the girls would be into gymnastics & dance or ballet.

I dislocated my shoulder months back, it still causes me issues, I'm in pain and I have to think about how I move my arm. I could go to my Drs and say bla bla EDS, but I don't see the benefit of being diagnosed. My hips have popped out frequently from when I was a young age, which is troublesome or was troublesome during sex. My back gives way due to the joints that hold your ribs and back together, can't remember what they're called. The only real treatment for EDS is pain relief and splints. I have splints anyway, I just have to be careful how I move and what I do.

If I was to sum up today, I would say I'm really cold, tired and uncomfy. Doesn't sound like major issues, but I'm losing weight, my organ function is impaired, that's the main reason for my symptoms. Whilst I've said on here that's how I feel, no one else knows, as I can't think why it would be any use then knowing.

So my existence is just that, an existence. I try as hard as I can not to impact those around me, out of courtesy.

Thanks fairy it's my ds who I'm determined will go to Uni. That was in reference to some disabled people who try and hold their dc back. My disability really is a wrong place, wrong time situation. I developed punuemonia from flu ending up on a ventilator. They cleared up the flu and pneumonia but I caught a further, rarer bug from the ventilator. The five weeks it took to isolate and treat the bacteria meant a big chunk of my left lung became horribly scarred. I went from being a normal mum, running around juggling work and kids, dh had his own successful business a week later I'm on life support with them being told not to venture far from the hospital as I wasn't expected to survive the night.

I get where you're coming from with life being an existence. Now, I need help for everyday tasks. My lung function is 50% my short term memory is shot from hypoxia and I'm in constant pain. People ask why I'm cheerful. I tell them if moaning cured lung damage I'd moan but being a pain in the arse just ruins everyone else's life. My dh and dc didn't sign up for that so I look for the positives. It's hard some days though.

I used to be on that Instagram thing, again I thought it was a good way to meet other people who were ill. I found myself getting annoyed at every little thing being documented, like when I've been in hospital, I've never thought to crack out the camera as I've been really ill, thus in hospital. Who cares if you have a blood draw with 4 tubes or 40 tubes, slight exaggeration I know, but the 4 tubes could show a load of problems and the 40 tubes nothing.

I'm sorry you went through so much Lynn, you sound like you deal with things the way I do. I know those around me trust that if something was really wrong I'd let them know, I have done too, 1am in the morning keep on being sick, pain radiating round a certain area, we know what it means, an ambulance will come, there's a team waiting for your arrival at hospital, you have blood drawn, gowned and prepped for surgery as soon as you hit the A&E trolley. Tests, X-rays, all sorted in half an hour, on the table in 45/60 minutes.

If I was to be like some people I saw on social media, I think I'd feel more miserable, as would the people around me. Oh this hurts, that hurts, I feel really ill, really cold, really tired, just want it to end. Nothing they can do will help at all. Maybe a hot water bottle, or the radiator closest to where I am switched on. But I dress for winter in summer there's no rhyme or reason to it.

I'd hate for the little energy I have to be focussed on what's wrong. I was lay on the sofa yesterday, children got back, the enjoyment from them opening parcels, figuring what was whose, then DS trying to sneak away something that was bought for me. It was lovely. I was up watching TV, Inside Number 9, quite good, I slept all the way through accidentally missing meds. But was worth it to have the normalcy.

Tonight they all got back, I was asleep, they did whatever, kissed me good night, then my husband roused me to say he was going out. I woke up then in case I was needed, DS came down to chat as some game he spent his pocket money on hadn't arrived. We chatted about some YouTubers he likes. Then he said he was off to sleep. I surfed through some of the names he mentioned to check they were appropriate, hubby got home and chatted for say 10 minutes, he sorted the radiator & hot water bottle before he went up to bed. It's Easter Hols so was asking what was planned, he's moving office to be closer to home, there's some survival skills based kids club where they do exciting stuff.

If we're blessed I hope to be well enough over the Easter weekend, but unlikely. Would love to go away with everyone, but it's a long drive if you're feeling crap, plus everything has to be w/c friendly etc.

Do you have normal mobility or does your lung function mean you need assistance?