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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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

I guess we should check out that carers table then

20140610-233824-85104750.jpgAnother afternoon spent at hospital with my 5-year-old. Another trip to the eye clinic. We are on first name terms with the lady at the desk now. She doesn’t even look at the name on the appointment card as we hand it to her. She ticks my son’s name off on the list without even giving it a second though. He’s become a ‘regular’ now.

We are well versed in the hospital and clinic drill. We know when parking is going to be an issue and drive straight past the visitor car park and right into the overflow one without the previous six circles around looking for a space we used to do. We have long stopped looking at the signposts directing people to wards, clinics and hand washes. So this time we think we can risk taking the 5-year-old in without his mobility buggy. He knows the drill now. And despite hospitals apparently being one of the most disabled friendly places around, believe it or not, the chairs in the clinic are all nailed to the floor in rigid rows with no space for wheelchairs or buggies of any sort! My son can walk, physically anyway, and he is able to sit on a seat. So it has to be easier if we walk him in.

As he flaps and vocalised towards the front door I suddenly realised we had our first problem: automatic doors! Isaac loves them and is never content to just open them once…or twice…or forty times. He could happily be entertained by them all day and all night. The clinic is on the ground level so there is no enticing him along using a lift as an incentive. Not that he would get in the lift anyway. No, he would just want to watch the doors open and close all day there too.

I ended up carrying him. He is two-thirds of my height now and almost a third of my body weight. And if he does not want to go somewhere…well he won’t make carrying easy! What was I thinking leaving that buggy in the car? We arrived at the clinic exhausted before we even started.

I should have guessed it was going to be one of ‘those’ appointments. You know, the ones you think seem never-ending. The ones where the clock on the wall forgets to move and everyone else leaves when you seem stuck to the seat. Yes, those ones. Isaac sat hammering on the sponge seat back laughing at the noise. At least he seemed happy enough. He had to be carried into the first room. They tried and failed to get his attention. Until they put those dreaded drops in that is. Non verbal does not mean compliant! We had a choice of waiting in a boring waiting room for half an hour with a five-year old with complex needs who now had stinging eyes and blurred vision or we could leave the clinic and return in 30 minutes. Moving the car was not an option or it would take longer than the 30 minutes to find another parking space. Isaac had his own plans. He ran straight back to those automatic doors again!

Watching him flapping, clapping and spinning at those doors and gradually getting more and more confused as he could no longer make out the exact point of them opening and closing due to his vision slowly failing, made me suddenly realise that I was no longer just a parent to this boy. I had long passed that point. I was now his mummy and his full-time carer at the same time. He was my son, yes, but he was also in need of much more care than any ordinary child his age. Though his eyes were struggling, mine could see clearly. This was a child with needs so severe he will need life long care. I was so relaxed in this hospital setting from so many visits that it seemed like home.

My husband walked over and said he had noticed a table with some people at it. We had walked right past it. So preoccupied were we with watching out for the needs of our son, that ironically we had walked right past a table of leaflets and handouts for carers!

Are we parents or are we carers? Or can we be both?

We have two children registered disabled. My diary is full of appointments for hospitals, clinics, home visits, and meetings. I spend my week carrying out speech therapy, play therapy, writing social stories, making visuals and making sure we have mashed potato in. Both my children have teams of professionals involved in their care and support. I am still changing nappies on 5 year olds. 20 minutes ago I just had to carry my child kicking and screaming down a hospital corridor because he refused to leave the automatic doors.

I guess we should check out the carers table then.

Society may not see me as anything more than a mummy. Until recently I would have seen myself as more of a mum than a carer too. I look after my children because I love them, like all mums do.

But very few five-year olds still need to be changed like a baby. Very few five-year olds have no speech. Few five-year olds have the complex medical and developmental needs of my son, or the high anxiety of my daughter. Thankfully not many five-year olds require teams of professionals to support them everyday.

Isaac was given glasses this week. Lots of five-year olds have glasses. But for me this was the final thing that made me realise I have definitely moved from just being mum to my children to also being their carers.

It was amazing how many people checked out that carers table. Today I was one of them.

A trip to the eye clinic for my son has helped him see clearer. But it also helped me see clearer too.

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When the carer needs care

Wake up, eat, go out, come back, eat, play, sleep. Simple really.

And then mum went and fell down the stairs.

Kiss it better, put a plaster on it, don’t think about it and it will go away. Simple really.

Stop! Yes, you read that right: mum went and fell down the stairs. This isn’t a kiss it better situation. or a simple plaster affair. This is serious. This involved accident and emergency departments, a splint, bruising, pain killers and crutches. But it could have been so much more serious. And for that I am eternally thankful, despite the pain.

So what happens when the carer needs care?

By defination of a carer you are supporting and looking after and seeing to the constant needs of another. You are the lifeline, the advocate, the stronger one. The carer sacrificially puts the needs of the other person before their needs daily, whether this is in a paid capacity or not. And for many, like me, this is a 24 hour a day, 7 days a week job. There isn’t sick pay, or holidays, or even lunch breaks. Training is in your ‘spare’ time and has to be juggled around appointments and therapies and the care needs of the person you support. Parent carers like myself work behind closed doors, silently doing all that needs to be done to ensure the welfare of your disabled child or children is put first. We carry out therapies because there are not enough hours of speech therapy or physio or nursing care available. We administer medication as efficiantly as any nurse and our patients date of birth, allergies and personal information rolls off our tongues as easily as our own does. We fill in forms and specialise in the day to day care of conditions we have had no previous education in. We are nurses, therapists, entertainers, interpreters, cleaners, cooks and drivers on a daily basis.

But every carer is human. Accidents happen. We have emotions and feelings and sometimes, actually more often than we realise or want to admit, carers need care too.

So for me that has meant a period of rest and reflection. And allowing others to love and support me. And that is something I have found hard. Not only because I am used to being the strong one but because my beautiful children have found it very challenging too. It may sound a cliche but seriously my heart was often in more pain than my pysical body at times.

While I dealth with this:

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my boy reacted like this:

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Because he has autism and can’t cope with change. Because he is at the stage of requesting things by taking mum’s hand and leading her to what he wants and he can’t transfer that skill to anyone else. Because he has global developmental delay and can’t understand that mum is injured. Because he can not tell us what he wants or what is going on as he has no speech. Because he is just a child after all. And he gets the care, not mum. It’s hard to realise that person who does your washing and ironing, keeps your house clean, puts food on the table for you, changes your nappy and works the television is, after all, just like you and has feelings and pain and needs help at times. Gosh, many a teenager still struggles with that concept so no wonder a four year old can’t grasp it overnight!

So when he went to his room we found he had smeared. All over walls, bedding, toys, himself..well everywhere really. The mess, the smell and urgency to get him away before anything was ingested would be overbearing for anyone, but when you become soul carer to two disabled children and an injured wife, well it must have felt like the whole world was against him. In my eyes my husband is a hero. My admiration for a man who can face all that and still smile has just got so much stronger. But you would never known he had dealt with that behind closed doors. Because that doesn’t make news. It is just daily life. It is love in action.

And when we took him to a hospital appointment Isaac screamed. That ear piercing, get me out of here, all consuming scream. Continually. Because he was in his disability buggy, mum was on crutches and his sister was trailing behind. Because it wasn’t possible for one of us to supervise his urge to walk up and down in straight lines gazing at the ceiling lights. Because he was at a hospital and clinic he had never attended before and he hates change. Because we had picked him up early from school in order to go. Well, in reality for any number of reasons really. But the fact was he screamed. Continually. Even while we were trying to speak with the paediatrician. Hey, we are carers and parents and we are human too. It hurt our ears as much as it did everyone else. We needed headache relief like everyone else.

Do you ever stop and think that someone you know could be going through something like this behind closed doors?

He does sleep (albiet with the help of a supplement), and most weeks are not this bad. Thankfully.

But when I started blogging I said it would be an honest account. So this is life.

And then he does this:

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He used a point for the first time EVER and actually tapped the ipad in the right place for the first time. His smile and the achievement and the love of his twin sister sharing the moment. Well, that is worth the screaming hospital appointments, and the smearing and the pain in my knee. That is why we care.

Injured knees mend, headaches from screaming ease, poo can be cleaned. Seeing a child reach a milestone is worth it. Hearing that first word makes it worth it. Knowing your child is breathing, eating and growing makes it worth it. It really is incredible to be a full time carer.

But the emotions and the intensity and the fact accidents happen and carers are human mean that no matter how big a smile a carer has, never forget that carers need care too. And that isn’t just because they are injured.

You never really know what is going on behind closed doors. Let someone know you care please. Hug, smile, do something nice for them, and don’t judge. It could be you they care for one day after all. Or you could find yourself being a carer.

Today has been a good day. There has been no extra cleaning, or extra high pitched screaming. No pain killers needed and the knee is improving. We all woke up, ate, went out, came back, played and went to sleep. Simple really.

But the week the carer needed care taught me that we are all human. And it’s ok to need help sometimes.