Why Has Society Got Such An Issue With Parents Being Carers To Their Own Children? 


‘What do you do for a living?’ 

‘I am a carer.’

‘Oh wow. Where do you work?’

‘From home. I care for my disabled son.’

‘Oh, you mean, you are a stay at home mum?’

——

What is the problem with people understanding the fact that I can be a mum and a carer for my own son?

 
Even within the community I am part of (families with one or more children with a disability) some still don’t understand. They see what I do as what every mum would do and to an extent they are right.
The issue is my son’s needs are so great at present that I am unable to work. He has complex needs and is therefore entitled to a benefit for disabled people. Part of that means someone is able to claim a separate benefit to care for him. Why can’t that be me since it is me who is doing that job?
If I were to devote the same hours to caring for my elderly mum, or for my next door neighbour or even a friend I would be seen as noble and brave and most people would be urging me to claim the carers benefit to cover my expenses of taking them to hospital or making them meals or even as token payment for my hours of care. The issue only seem to be when I mention that the person I care for is in fact my own child.
You see people are able to see that caring for someone else necessitates a clear distinction of roles. There is an expectation of a carer to put so many hours in, put the other persons needs first, make sure the person cared for is getting the best services possible and facilitating them to attend places they need to go to. When you give birth to a child there is an assumption that a parent will do all of that for a child regardless.
But there is also an assumption that at some point the child will became more and more independent and the caring side of parenting (the formal looking after side rather than the emotional caring which lasts a lifetime) will gradually fade.

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There was a time in my son’s life when I realised that for him this was never going to be the case. It was not a day or even a week but a gradual realisation that the child I gave birth to was not meeting milestones and was never going to live independently in any way. At 9 he can not speak. He has no concept of using the bathroom on his own. He can not open a packet of crisps nor use a knife and fork. He can not dress himself.
His care needs are 24 hours a day 7 days a week. He started receiving his disability benefits at just two years old. I never started claiming anything as his carer until many years later. When he was still of pre school age, even though he never walked  until after 3 and he was uncommunicative with very limited understanding, I still viewed myself as his parent much more than any sort of carer.
When he began school I looked at returning to work either part time or full time. That was the beginning of me realising I was not in any way a traditional parent. The school would call regularly just as his nursery had done previously. His medical appointments totted up quicker than I could keep up. His diagnoses accumulated continually. His development, on the other hand, stalled. Sleep was just a few hours a night while screaming could last much of the day. I sat in so many hospital waiting rooms dreading what doctors would tell me next.
I googled what a carer was:

A carer is anyone who cares, unpaid, for a friend or family member who due to illness, disability, a mental health problem or an addiction cannot cope without their support. (Www.carers.org) 
I googled what a parent or parenting was:

Parenting or child rearing is the process of promoting and supporting the physical, emotional, social, and intellectual development of a child from infancy to adulthood. (Wikipedia) 
I thought about my child. If parenting is supporting his development from infancy to adulthood I was definitely a parent. But I looked at the roles of carer and realised my child has a life long disability. He wasn’t going to get better and at no point in the foreseeable future would he cope without my support.
I could not get a job because my commitment to him was too high. He could not access after school care and neither could a child minder look after him. Family members could not look after him either as his physical care needs were too high. I finally realised I was his full time carer as well as being his mum. 
I understand that my role is complex. I understand that many would say ‘well surely any mum of a disabled child would do that?’. I see you metaphorically scratching your head trying to figure out if it is right that a mother can be paid to care for her own son.
While you think about it I am wiping dinner from my son’s face. I am holding his hand while he walks, I am lifting him into his car seat and strapping him in. I am watching him through the night as he is wide awake yet again. I am bathing him and changing his continence products.
I can’t wait for society to decide if I am caring: I am far too busy being my son’s carer. 
There is no-one else stepping in to the role after all.
Whether society wants to accept it or not thousands of parents in Britain today are caring for their own children as well as parenting them. 

I am just one of them. 

 

A version of these his article first appeared on Firefly here


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Who sees the hidden young carers?


As her brother climbed awkwardly into the swing she held it still for him as best she could before gripping the chain and gently pushing it forwards and backwards to keep him happy. For all her brother screams and attacks her and makes her life challenging she never stops wanting to help him and support him. She pushed that swing with all her might (he is 21 pounds heavier than she is) until he tired of it and wanted off.

 
The only one who noticed was me.

 
This is just one example of young children who are living their lives as young carers hidden from the eyes of so many around them.

 
Who sees the hidden young carers like my daughter?

Just days before her brother was having a difficult night. He has complex medical and developmental needs and is unable to communicate using speech. He was distressed and agitated and it was taking both myself and my husband to keep him safe and calm. He had just had a difficult meltdown where things had been thrown and broken and as he gradually calmed we were sorting out the mess and chaos surrounding him. As one of us cleaned up broken glass the other went to check on food that had been quickly left cooking downstairs. On my return I could not find my son in his room and neither could I find my daughter. I stood for a minute when I heard a noise I had not heard for days: children laughing!

His sister had decided to run her brother a bath to cheer him up. She had made sure the water was the right temperature and put in his favourite toys and here she was sitting on the toilet beside him checking he was safe like she was suddenly ten years older than her true years.
The only one who knew she had done that was me.

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Who sees the hidden young carers like my 8 year old daughter?

 
Another night recently my husband had popped out for a bit. My son had been bathed and both children were in their nightclothes when my son suddenly began throwing himself down the stairs screaming hysterically. I ran to him and held him tight as I tried to settle and calm him. His anxiety was at crazy levels and he was inconsolable. He was making so much noise I never heard the front door open and I never saw my 8 year old leave the house in just her pyjamas. The first I knew was when my son pulled me to the stair window and my heart missed a beat seeing my daughter the other side of our street closing someone’s front door. The second that door was closed her brother resumed his flapping and clapping like the world was suddenly back to being right again. When I spoke to my daughter later explaining how leaving the house is dangerous she replied ‘My brother needed me. I was only trying to help him.’ (As a side note I live in a very quiet side street and I am fully aware the door should have been locked. Hindsight is a great thing!) 

I was so glad no-one else saw her and I know she won’t do that again. But it still leaves the question who sees the hidden young carers like her?

 
There are young carers groups out there. They do a wonderful job for many young carers. Yet there remains so many young carers like my daughter who are ‘hidden’ due to a number of reasons.

 
My daughter is not recognised as a young carer because we are a two parent family and it is deemed her level of care for her brother is not ‘substantial’ or regular enough.

She is not recognised as a carer because she herself has some needs and it is deemed that due to these needs she is not able to care for her brother.

Until recently she was not considered to be old enough to be a young carer.

It was felt by professionals that we should not allow her to take on the caring role that she herself has readily and willingly taken on.

 
These are just a few reasons why young carers can be ‘hidden’.

 
Statistics say there are around 700,000 young carers in the U.K. That’s the ones who qualify as young carers but what about all the other precious children who are doing more than they should for a disabled or ill family member and no-one sees or knows?

 
I see my daughter so at least I can be there to support her and thank her even if others don’t.

 
There are 13.3 million disabled people in the UK. I wonder how many of them are being cared for today by a hidden young carer?

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The crisis of carers paid just £1.79 an hour.


I went to renew my car insurance recently only to discover my occupation is ‘unlisted’. I was forced to telephone them and ask what I should list myself as. They decided I was either ‘unemployed’ or ‘stay at home parent’. I am neither of these! I am a full time carer but no-one seems to know we even exist!

 
I gave up a managerial position to care for my disabled son. I have a degree education and had a good career in sales. I was a home owner, had a fairly new car and I was valued. Then I had a disabled child and now all I am deemed worthy of is an hourly rate of £1.79. In reality I get much much less than that!

 
I feel utterly disgusted at how unpaid carers are treated in this country. Are people aware that carers allowance is only given out to those caring for someone 35 hours a week or more and that it is a weekly amount of just £62.70? I wish I was only working 35 hours caring but assuming this was all I worked I would still only be paid a measly £1.79 an hour! Would you work for that amount?

 
Would you work permanent night shifts dealing with someone with challenging behaviour, who is completely incontinent and has night seizures, and still have to work 12 hour days as well? Would your union not have something to say about this? What about if you had no breaks and were often attacked at work? What about if you were denied any holidays or even time off for ill health? What if sick pay was non existent? What if all your employment rights were taken away from you?

 
When I became a full time carer it appears I lost all my human rights.

 

 

I have no union to protect me and no manager to put my case to. I went from being a someone to a no-one the second I became a carer.

 
I am considered nothing by society who view me as a ‘benefit scrounger’, ‘lazy’ or nothing more than ‘unemployed’. People scoff at my ‘profession’ like it is a joke.

 
Let me tell you my job is no joke!

 
I deal with life and death with a child who has severe complex needs. I make decisions on his welfare and health needs daily that should really be made by neurologists, doctors and oncologists. I co-ordinate his care without a secretary and attend meetings without back up. I sign forms as his ‘representative’ without legal support because no-one else is bothered what happens anyway.

 
If my son should die and I updated my CV employers would simply see me as having taken a ‘career break’ or ‘time out for family’ rather than viewing my current situation as a serious job. Why? Because caring has no prestige. It is seen as worthless, less than, of no value and not beneficial to any career. Even if I wished to use my experience to take up full-time employment in the care sector my current work is of no use as I have no reference or company or courses I have completed.

 
Even the NHS view me as simply the one who pushes the wheelchair or who hands his appointment card over. When my son reaches a certain age it will be expected he will attend appointments with me waiting outside despite the fact he is completely non verbal and unable to understand what is required of him. I will have to go through a host of hoops and bureaucracy to prove as his carer I even have a right to be with him, yet anyone can have an advocate or friend with them and they are fine?

 
I gave birth to a disabled child. I gave up my career to be his carer. Apparently that means my career has hit a brick wall and I have waved goodbye to my self respect and self worth. My job title no longer even appears on a drop down list and my hourly worth is now reduced to just £1.79 an hour.

 
This is the crisis of carers in Great Britain right now.

 

 

Does anyone realise this is going on? 


The extra stress of being a full time carer at Christmas

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If you ask people what jobs never get time off at Christmas and the majority will list those in the emergency services or health service. These are vital services that we all expect to work through public holidays to ensure our health and safety at all times.

But among those working tirelessly on Christmas Day, Boxing Day and throughout the new year celebrations too are full time carers; unsung heroes who sacrifice their own holidays to care for the needs of others, often at little or even no pay.

Christmas for full time carers comes with so much extra stress as services they usually rely on throughout the year come to a halt for the festivities. When day care, special needs schools, home help and respite centres all have times of closure for staff to have annual leave the full time stay at home carer is the one left to pick up the pieces, work longer hours and ensure continuity for the person they care for.

Then you have the fact that pharmacies, GP surgeries, dentists, clinics and out patient appointments all cease for a few days too. For full time carers coping with loved ones with complex medical conditions this not only causes complications but extra worry. Out of hours call centres have often never heard of genetic conditions or have the training to deal with patients who perhaps are unable to communicate. Taking a person you care for who has complex medical and communication needs to an out of hours GP with little to no knowledge of their medical history brings risks and worries for a carer so they often care for someone at home when otherwise they would be able to access medical support. Getting a person who is wheelchair bound or who does not cope with new environments into a clinic they are unfamiliar with presents extra stress and anxiety for a carer who is perhaps already exhausted themselves.

Christmas comes with an expectation of giving to family and friends. For a carer who devotes their entire life to someone else this brings a huge challenge of finding time to do all that is expected as a friend, a mother or sister whilst juggling the continued needs of a loved one. There is only so many hours in a day and the pressure on carers to be everything to everyone can take it’s toll.

Carers are incredible people though. They take on the role of so many professionals without the pay or training. They do physiotherapy, speech therapy, play therapy and occupational therapy without realising. They provide stability of care, reliability of routine, love and attention that no other service or person could provide. They feed, dress, take care of personal needs and befriend some of the most vulnerable in our society at a time when these people are so often forgotten.

This Christmas Day thousands upon thousands of full time carers will be preparing specialist Christmas dinners for someone they love, who for many reasons, is unable to use cutlery or sit at the dinner table with family. They could be providing pain relief, ensuring oxygen is supplied properly or talking to a loved one as they come out of a seizure yet again. They could be changing nappies or pads, dressing wounds or unwrapping gifts for someone else who can not do it for themselves.

They do it out of love. We owe them our love and gratitude too. It may not be our loved one they are caring for right now but one day it could be.

I am one of those full time carers at Christmas and I know the extra stress that this time of year brings.

To all those caring this Christmas know that you too are cared for. I see the extra stress this time of year brings and I care.

I see you care.

Know that I care too.

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This post first appeared here

No-one today should be caring alone

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No-one today should be caring alone

Middle aged man, commuting by train
Thoughts turn to his sister he left crying in pain
He’s off to a meeting, while she struggles at home
Both of them left to face it alone

Teenage mum struggling, pushing a chair
The child is yelling, people just stare
She is begging for help as she picks up the phone
She cares for her child, but does it alone

The couple at the cafe, sharing their tea
One of them lost yet no-one can see
He lives in the past, a mind not his own
Forgetting her name, they both grieve alone

The parents of a child who may never walk
They sing to a baby who still can not talk
Kissing a hand, though it’s all skin and bone
Everyday precious, weeping alone

Little eight year old, should be out to play
Instead she is feeding her dad everyday
Doing his care as the nurses have shown
With no one to tell her she isn’t alone

The next door neighbour, bringing some meals
Staying and listening to ask how she feels
Filling out forms while letting her moan
Determined his friend should not feel alone

The father sitting at the hospital bed
Digesting the words that the doctor just said
A new diagnosis, his mind has been thrown
Needing support so he isn’t alone

So many people with stories to tell
Caring for others, and doing it well
Yet they all need support, to know they are not on their own
Because no-one today should be caring alone.

Miriam Gwynne