So there I was, holding my husband’s hand on the sofa. I had just told my two girls to go and brush their teeth ready for bed. Their little groans of displeasure at it being bedtime were shortly followed by my oldest girl attempting to climb the stairs on her bottom…feet first, using her arms to lever her upwards. A brief, one-sided discussion about the possible consequences of her choices ensued…followed by more groaning.
Then my two girls, happy little wacky things that they are, finally went upstairs to get ready for bed and we could hears me giggling from upstairs. There was some splashing going on and some high-pitched, excitable sounds. My husband and I look at each other, and for that brief moment we were thinking the same thing; that if we wait one more minute pretending there wasn’t the potential for chaos happening over our heads, that we might just be able to relax.
Shrodinger was a scientist with a theory, the theory being that a cat could be placed in a box with a timer-released diffuser with a toxin inside of it. The diffuser would release the poison at an unknown time, so whilst the cat was in the box and nobody knew whether the toxin had been released or not, the cat could be thought of as both alive and dead.
Now this scientific theory is famous and very strange. It also has some serious animal cruelty issues going on but we can roll with it. This theory can be applied elsewhere in life, to all areas of the unknown aspects of life. To waiting for important test results, to wondering about long-lost relatives or to child infested bathrooms. My new husband and I (we married less than a year ago) sat there waiting to go upstairs, wanting one more minute of peace before seeing the damage that my blonde little weirdos had wreaked and in the unknown moment we could think of the bathroom as both tidy and completely tooth-paste bombed at the same time. Parenting, caring, Shrodinger’s cat. Not so different really….apart from the poison and the cat….I hope.
So a work friend and I somehow started talking about this old show, Trap Door, a crazy cult classic first aired in 1984. Trap Door features a cheery-natured blue guy called Berk, his best friend, a disembodied skull called Boni and an androgynous pet spider called Drutt. So while the theme tune whirls around in your head, and it will, let’s examine this old gem!
Berk spends his time cooking and cleaning a rambling old castle and following the orders of The Thing Upstairs, typically each four-minute episode features Berk managing to loose some kind of mischief from the Trapdoor and chaos ensues. I was laughing about all of this when it hit me that Berk is a carer. A run-of-the-mill, overworked and attempting to be cheerful about it carer with a host of issues that pop up along the way.
Now, don’t misunderstand me, I am by no means calling your loved ones The Thing Upstairs, that cantankerous character who is never seen but described as having many heads, a humped back, a missing eye and other strange attributes is unlikely to be an accurate description of the members of our family that we support on a daily basis. But isn’t it true that wonderful and loved as they are, the all-consuming nature of the caring role doesn’t half demand attention, it becomes so much a part of your life that it becomes who you are.
The loved one may not actually yell “BERK, FEEEED ME!” That is, unless your name is Berk; but when it all mounts up, the feeling is the same.
Watch only one episode of this classic and it’s clear that there are similarities to our lives all over the place. An unrelenting need that has to be met and is easier with a smile and all the…
Communication is key, isn’t that what we are always told? As a carer for my elderly grandmother I seem to be constantly liaising between different people who don’t seem to talk to each other! Ever since my Gran significantly deteriorated in the summer of 2017 I can’t tell you the amount of chasing information or confirming plans that I have made with GP’s, Pharmacies, Hospital Ward Managers, Social Workers, Care Co-ordinators, the list goes on. And in the middle of this is my Gran who still has capacity but is very fragile emotionally and physically but still very much needs to make her own decisions.
I am happy to do all of this for her but when crises happen at home, in hospital, with re-enablement I can’t help but think what about all those people who do not have a family member to do this for them?
I have just spent the last 5 months taking my Mother backwards and forwards to numerous hospital appointments and tests, after she asked for a ‘second opinion’ on whether she could or should have an operation.
Now all this has come to an end, to be told by my Mum ‘No I am not having the op, I never was. I just wanted a second opinion.’ AAAGGHHH!!
Invisible disability – the hidden conditions. The fight to prove that being up all night with a child having seizures or a child that has anxiety or meltdowns does have an impact. Of course, there are many hidden conditions and disabilities. Just because they look “normal” to you doesn’t mean that their lives are, far from it.
Yes, the word is beginning to get out there, that just because you cannot see a disability it does not mean a child doesn’t have to face daily challenges. Supermarkets for example are changing toilet signs to recognise it, EHC
In the last few years adult colouring book sales have soared, many people are investing their time and money in therapeutic nostalgia of sitting for hours to shade and blend intricate pictures. I decided to join them.
I have two daughters, one has appalling handwriting, colouring with her would be the perfect way to build up strength in her hand. (It may have also give me a solid gold reason to tell other grown-ups why I was colouring if they asked.) I purchased a beautiful book went shopping for colouring pencils…
‘I’ve always felt like an alien, now I know why.’ This was the headline of a recent iPM show on Radio 4, a programme that focuses on listener’s life experiences and they are always captivating and eye-opening. This latest episode was certainly that, telling the story of a 50 year old man who had just discovered he had Asperger’s syndrome.
After regaling his traumatic school life he talked about meeting his wife and forming friendships and all the challenges this involved; how exhausting and overwhelming he has found it over the years to read social situations and work out how to engage. On the plus side he talked about how his Asperger’s makes him a great husband and father, fun, creative and truthful.
So how has this diagnosis made him feel? A mixture of relief (now he knows why he has always found certain things difficult) and sadness (if he’d known earlier perhaps life would have been easier). But he felt as though he had been living as a fraud, that he hadn’t been living truthfully. He admitted that he would now stop putting pressure on himself to behave in a certain way and instead just be himself which has to be a good thing right? He can now celebrate his personality fully instead of feeling on the outside or lacking in some way, which of course he isn’t. But it made me think about the generations of people who were born pre our awareness of Asperger’s, Autism, ADHD to name but three and who have had to navigate their way through life without this knowledge and support. We at SuffolkCarersMatter would love to think that moving forward nobody has to go through life without understanding, support and complete acceptance and we will endeavour to do all we can to make this the case for the carers and families we work with.
If you are an adult and you have had a late diagnosis or if you have never been diagnosed but have a feeling that this may apply to you then we would love to hear your story. Please contact email@example.com
At SuffolkCarersMatter we are optimistic and excited about this new initiative and hope you will be too. As carers ourselves we are aware that there can be highs and lows, achievements and frustrations, though of course these differ with each situation.
Our research has shown that Suffolk has an increasingly ageing population. By the end of the 2030’s working age people (namely 20-65 year olds) will be a minority of the Suffolk population.
So where does this leave the Parent Carer?