AMPLIFYING CARERS' VOICES
Creating a space for carers to share their voice.
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Rachel Mewes
Rachel writes for us January 2021 during Lockdown 3.
Here I Am. Here We Are.

Those of you who are an unpaid carer for a loved one, whether that be a child, partner, parent or relative will understand what you are about to read. You will 'get it'. When we were told at the start of the pandemic that we're all 'in the same boat', nothing could have been further from the truth. Most people don't even know what our boat looks like, or, if they do see it, it's disregarded and ignored. We are a mirage on the ocean. Unpaid carers are in our own individual boats that were already weather beaten at the start of the coronavirus pandemic. What is your boat like now? Mine has a broken engine and is leaking saltwater through the cracks and my distress flares got wet and don't work.

I wish I could say that the pandemic has shone a light on the situation that so many of us live in, as unpaid carers. Instead, it has further driven us into the dark. It has truly demonstrated how we are not even recognised as an entity in the British population. Personally, I feel that at no point during the past year, have the government recognised that people like me exist. That children like my daughter exist. That families like mine have a different level of need to those without an individual needing 24/7 care. We have been sidelined. We're not even an afterthought.

When the country was locked down, last Spring, carers found themselves placed in an impossible position. From that point, all care, education, intervention, therapy and support for my daughter needed to come from me. When you are a carer, under typical circumstances, you have a team of people who provide input into that person's life in order to maintain a good quality of life. The pandemic stopped every single service for us. We had no nursery to send her to for her 3 days a week. A specialist nursery that provides excellent intervention for children with disabilities. If you think homeschooling is hard, try being an entire team of specially trained staff on your own. My daughter's speech and language therapy stopped, her physiotherapy, her specialist playwork (Portage) and her clinics with her Paediatrician. Suddenly, everyone you rely on, to help meet your child's needs, were gone. The feeling of isolation and fear is devastating.

Under normal circumstances, parent carers get together with each other for support and encouragement. I attend two separate support groups for children with disabilities and find they are vital for me to maintain good mental health, but also for my daughter to socialise with other children and engage in intervention activities. These groups stopped too. So the back up plan of accessing your support groups is gone in an instant too. Now, on top of the fear and isolation, the panic begins to set in. How will I cope? I am human. Not a robot, as so many seem to think we are. Ever robots need to recharge though, and we don't have a power supply.

So we do what we do best and we care for our loved one. Our workload has intensified. We spend more time, tending to needs, lifting and handling, all of which start to take a physical toll on your body. We try and be a replacement for speech and language therapists, physiotherapists or other services, and attempt to keep our child's intervention activities going. But we aren't qualified in any of these areas. We try and keep in touch with friends in similar boats, but the sheer amount of attention and care our child needs, leaves very little time to access any social support for ourselves. Sometimes we don't have time to wash as the needs of others come first. We become reliant on dry shampoo.

As the months go by there is a gradual wearing down of both physical and mental health. This situation is unnatural. No man is an island? We are. We are stranded on an island and although we have been calling out for help and sending up smoke signals, nobody is coming to rescue us.
We have accrued additional costs over the past year. As winter approached we needed to heat our homes that we wouldn't normally be in during the day. We have used so much more electricity and gas, using devices to homeschool and cooking every single meal at home. Some of us had to use money we would normally use to buy winter clothing to buy tablets or computers as we are under pressure to homeschool.

Schooling a child with special educational needs or disabilities requires a degree, a postgraduate diploma and extensive extra training. Suddenly, the legal document called an Educational Health and Care Plan is no longer valid. Our government decides that our children don't have a right to access an education like children without disabilities. And that is, somewhat, of a human rights violation. So on top of our massively increased caring duties, we begin to try and deliver the provision set out for our child that, up until this point, they were legally entitled to. There is no extra support. We are cut off with a bit of paper that is now worthless.

And now here we are. Almost a year later. A few services have resumed, but we are hesitant to access them due to a new, more infectious variant. Unpaid carers are advised to inform their GP of their role in order to get a vaccine. The point being, that the majority of us care for someone vulnerable. Yet, we are not recognised.

So much more could be done to improve the lives of unpaid carers. So much more could be done to create a society that actually wraps its arms around the most vulnerable. And I'm sorry if using the word vulnerable offends anyone, I do understand why some don't like it's use, but please see I am using it in context of my 3 year old daughter. So much more could be done to safeguard the human rights of those who need care and those who care for them. But this cannot happen, unless we are seen, recognised, listened to and respected as equal human beings. Is that too much to ask?

I am here. We are here. We've been here the whole time. Caring. Because we care. Do you?



Unpaid carers are in our own individual boats that were already weather beaten at the start of the coronavirus pandemic. What is your boat like now? Mine has a broken engine and is leaking saltwater through the cracks and my distress flares got wet and don't work.
@rachelmewes1982
Betsy's mam. Northumbrian.Writer.

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Hopelesslydevotedtocaffeine
One unpaid carer's blog for Carers Week 2020
I'm writing this insight/little essay into my life for carer's week. My son is severely autistic. Imagine the brain of a 13 month old in the body of a 7 year old. I'm his father and primary carer. My wife and I have a 2 year old daughter too.



Our boy loves to explore the world through mouthing objects, crawling, jumping, running, throwing, ripping and crumbling. Furniture is destroyed daily. We have travel curtains with velcro because he would swing from the curtain pole and try to strangle himself with the blind cord. Walls are painted with easy clean paint, carpets all replaced with waterproof flooring. Cupboards are child locked, all chairs and sofas replaced with bean bags, bed frames gone with only mattresses on the floor. We drink hot drinks from travel cups, only use laptops when he is safely tucked in his safe space because he wrecks screens. Daily we try and think of ways to make the house safe. Anti ligature radiator covers, reinforced toilets, security shutters, cctv, hidden kitchens. When he finally sleeps, we Google and get quotes, email the OT team and beg.



He is non verbal and his verbal skills are those of a 3 month old. He screams a lot, loudly and unnaturally shrill and pulls you to request food, his main and sometimes only motivator. He hits and scratches himself when he's upset or grinds his teeth, not that he has many left. Last week he gritted so hard he hurt his gums and he was spitting blood. He laughs too, which is deep and raucous and one of my favourite sounds to hear.



He is doubly incontinent. He can't wipe himself so poo gets everywhere when he sharts. He wees freely if we don't put him in nappies. We bought special needs suits with a zip at the back so he can't undress himself, but they're hot and uncomfortable for him, especially with his eczema. One of his favourite things is being naked. It's even better for him if he's naked on the fence, terrorising the neighbours by proudly displaying his poopy butt. He has an obsession with kinetic sand and spreads it everywhere. He likes spreading in general. Food, creams, poo, dirt. On ceilings, floors, walls, himself, us. We have to do 3 washes a day to keep up. I think we re-dress him around 40 times a day.



He doesn't sleep much and has no fears other than hand dryers and personal grooming. He broke the window lock on the second storey bedroom the other day and hung on the window, his feet barely touching the outside window sill. The neighbours alerted us just in time, we thought he was just jumping from the radiator to the mattresses on the floor. He is always one unsupervised moment away from death or grievous bodily harm. Every day, from 2-4 am to 7-9 pm. There is no time to pee, eat or drink sometimes. You have to be ready, constantly vigilant.



At night I wake, petrified he has escaped his safe space somehow and climbed through the window. I find the visual baby monitor and suddenly get worried he has stopped breathing. He can't tell you anything so we're always guessing, hoping we can tell from his cries or screams if he is seriously ill. I watch in growing terror until he stirs. The constant adrenaline and sleep deprivation makes me paranoid. My wife hardly sleeps at all.



We have a 2 year old daughter who also has issues. She has limited speech and a crippling phobia of strangers and eye contact. When people talk to her she cries and hyperventilates, until she goes limp and pretends to be asleep. She sleeps for 7 interrupted hours a day, no naps. She sleeps with us because she can't be trusted to be awake alone. She comforts herself by pulling your hair and poking your temples and sides of your eyes. Like her brother, she loves to climb, dangerously high. When she gets upset she falls to the ground, clawing at her eyes, writhing around on any surface, even gravel. There are crash mats and blankets everywhere, artificial grass on the shales outside. She has meltdowns about 20-30 times a day. At least she watches videos, unlike her brother. Peppa Pig in Russian and Polish, weird Asian cartoons where they count floating sumo wrestler's heads and Japanese cat videos. She makes impressive lines of toys, ordered by size.



The support during this pandemic has been a weekly or bi-weekly phone call from the school and early years portage and a single meeting with a house modification worker from the council, two metres apart, in the garden after he climbed the fence in 30 seconds and ran off. We have a bingo card for these calls, tick for 'that sounds very difficult', 'Be more vigilant', 'There is nothing we can do because of the pandemic', 'Have you tried googling ideas?', 'Why don' t sleep in shifts?',' I feel for you! ' 'We' ll call again next week.' It' s so demoralising, but expected. Even before the corona virus there was next to nothing.



The only thing that helped is that my wife got furloughed and didn't have to quit her job to help me look after the kids (yet) . The rise in working tax credits is not making up the amount of money lost from furlough and the increase in food bills though. Carers and the disabled have been purposefully forgotten during this difficult time. As the chancellor is shaking his money tree, not even a pound has been set aside for carers and the disabled. It can only be seen as a spiteful act.



Our world was small before, now it barely exists at all. Mentally and physically we are gone. Some days I feel myself go into auto pilot, a weird dissociative episode where I watch myself do the basic things required to keep everyone alive. Been married almost 9 years but we get to exchange maybe 10 sentences a day if the kids are very challenging. Health neglected, years of sleep deprivation presenting itself in a coffee addiction and an insatiable appetite for empty calories with the weight gain it brings. I have forgotten to socialise. No outside hobbies. I like to read but my kids tear and literally eat books.



I have my own health issues, with a brain tumour and a strong squint. The future is bleak. No idea who will look after the kids if something were to happen. No family support. During every annual MRI I get confronted by my own mortality and I'm only 28. It's all too upsetting to think about.



For carer's week all I wish is that unpaid carers like me and my wife are noticed. No kind words for they are always empty. At this point, the 'heroic efforts of carers are appreciated' sounds more like a snipe. Meaningful actions are needed. Inclusion. Financial support, if not to help us with the massive administrative burden of finding and applying for a patchwork of charities and discounts. Respite. To have people understand how little we are supported and to know how much a fight everything is. I'm cynical though. There have been many carer's weeks, with little or no change.







«Our world was small before, now it barely exists at all. Mentally and physically we are gone. Some days I feel myself go into auto pilot, a weird dissociative episode where I watch myself do the basic things required to keep everyone alive.»
Hopelesslydevotedtocaffeine
Carer
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