Think Hard, Think Carefully And Consider ….. 

Well hello! Some folk will be expecting this blog to be about the profound, yet devastating and powerhouse motivating news I received after FINALLY seeing the Neurologist and Neurovascular Surgeon last week, it’s not I’m afraid, my damaged little thinker is still reeling from that one and my intel processor is in overdrive. So today I thought it was about time I shared with you something I’d like you all to really think hard about. Have you had any dealings with someone who works in care? Are you a carer? Is someone in your family a carer? Are you like me heavily reliant on carers?

You see, back in the beginning, that’s January this year, the Physio’s and OT’s recognised I was really going to struggle, even with all the gadgets and gizmos that makes our already very small house seem even smaller. They suggested carers but my Mam was adamant that I was going to be better quickly, false information from good old Cramlington, who sent me home with no care provisions whatsoever! I struggled on in a confused and bewildered state, I just had to get on with it or so I was led to believe. In early March when I was admitted once more after defying the odds yet again and surviving, it was evident that my recovery wasn’t going to be as plain sailing and as short as they had first GUESSED! Yes, I deliberately used the word guessed, because after seeing the correct Consultants and getting the correct diagnosis, it’s so very clear that they simply guessed, they even misinterpreted my MRI and MRA’s and what’s more, the treatment they gave me, well let’s just say they over treated me for completely the wrong thing and in doing so put my life very much at risk rather than saving it, so after 11 months of being, as my Neurologist has described as a square peg being hammered into a round hole, I’m hopeful that I am now finally on the right path. I digress, anyhoo, I was given the most amazing after care in our very own Hexham General Hospital, where it was agreed, I needed care at home from the short term support team at first, as well as the rehabilitation crew. So my experience and journey with carers began properly in early March.

There’s absolutely nothing wrong with needing help but I do remember snippets of the days where being washed and having your teeth brushed by someone else never mind a complete stranger, strangled and choked the very essence of my soul. I’d sit and my tears would fall silently down my face, I was 38 and a stranger was helping me with my knickers and seeing me naked, all my wobbly bits and fat tummy and asking if I needed help wiping myself after being to the loo. Maybe it’s crossing some kind of unspoken boundary or it’s rather uncouth but it wouldn’t be a true account without talking about the unsaid. Again, another time, another place but my left side wasn’t the greatest either and I’ve just found out why but again, another day, another blog. I was determined that the nurses and carers were going to leave the bathroom and I was going to wipe my bits myself. Not as easy as you may think, no balance, no coordination, little gumption, bewilderment and a body despite my will and never failing strength and determination, that just wouldn’t cooperate. I was going to wipe my own foo and own bottom, whether it took 15 – 20 minutes and all the physical strength I had, I was holding onto that much dignity at least, as tiny as it was, I was keeping it. I don’t think I have one pair of stain free knickers to my name, they’ve been tackled by Vanish and my Mothers boil wash, there’s no hope for them, it’s terminal! Christ, and I wonder why I’m single, there’s nee hope for me now! Hahaha Mind you, my track record with blokes is just as stained and as terminal as my white knickers! That’s a very different blog! I may sound vain and ungrateful but I can more than assure you that I am none of those things, I’m no oil painting or pretty thing, I’m far, far from it but that’s why at the beginning I asked you to think hard and carefully. I’m not vain, it’s true but I am so very self conscious, that part of my brain still very much worked. The carers were fantastic and recognised all of this, they’ll have seen it a few hundred times before and they knew how to deal with it, in a caring and compassionate way.

Now I want to get this bit out of the way so I can then go on and sing praises and do a bit of jazz hands. I did have a bad experience with one carer and I really feel she’s in the wrong job. I believe that caring is a calling and I don’t believe that just anyone can do the role to the standard that’s required. Being a carer requires, respect, compassion, empathy as well as sympathy and integrity. This carer had none of those qualities, she made me feel uncomfortable in my own home, asked me personal questions and was wicked and cruel to my dog Dylan, to the point of kicking him. The first time I gave her the benefit of the doubt, maybe she had small children and had been up half the night, maybe she was having a bad day, maybe her last call before me was really tough going ….. I know most of you are sat there thinking, none of those things should matter, you should never be made to feel that way, well you’re right, the second time she came with the same attitude and I’d had enough. The care providers were amazing and I never saw her again. I have to add here, that she was one out of approximately 80 carers to have come through my door at that time and that number will be even higher now. One carer went outside the boundaries of care for me and my Mam one day, I won’t say who or why but let’s just say, without her quick thinking and compassion, I’d have been lying in excruciating pain for a very long time. Another act of kindness and outside the role of carer, was another kind soul who upon my garden furniture being delivered, the local town service bus crashed into the delivery wagon and narrowly missed my then car! She was straight out checking my car and refereeing the blokes, she wouldn’t leave until they had delivered the garden furniture and moved away from my car, god love her!

On to a true hero! Eee, well, what can I say about Val Kellet, I’ve just hung up from her actually, I’ve been bollocked for falling down the stairs and busting some ribs and breaking some toes, the last thing she said to me as she went out the door last week, was, don’t fall over, don’t break anything and don’t be poorly! You see, every time she’s had time off I’ve ended up in Hospital, I reckon she just shouldn’t have anymore holidays! Val isn’t a carer but I couldn’t not mention her. Val has been there from the start, she’s watched me barely able to lift my arm or bend my fingers, she’s heard me swear and shout at my body to work and desperately trying to drag my leg and foot, willing my toes to bend. She’s seen me pull and drag myself up the stairs with the rails, she’s seen the tears, the stresses and the strain of dynamic change within the household, she’s watched and aided me go from no movement to being able to walk 10 yards or just short with her support and walking stick of course. Val arranged aids to help me try and be as safely independent as possible as she identified very early on that I didn’t want to be cared for, I don’t think many folk do, I wanted help to achieve things for myself and that’s so very different. Knowing that my biggest most heartfelt goal is to take Dylan out for walks again, Val got me to go out on my scooter with her, it was the first time without the security of my Mam, she walked Dylan on the lead while I tootled along, once at the playing field, I got off my scooter and stood to give the ball launcher some welly for Dylan but Val didn’t stop there, oh no, this is Val we’re talking about, she gave me the chance to try and teach Dylan to walk along side my scooter to heal, so that I would be that little bit closer to my main goal – guess who walked Dylan home that day from the field? ME! Or maybe I should say scootered Dylan home! Val doesn’t suffer fools gladly and knows when someone is working hard and doing their best, she honestly reminds me of my Nanna and I truly believe Val was sent to me for that very reason. When I was admitted to hospital again back in March, I begged the Physio to let me have Val again, then just recently when my rehabilitation was put on hold because of whacking doses of morphine, I begged the Physio for more help and again, I wanted Val. If I ever lose Dylan, the first places I’d look, is next door on either side, Val’s car or Dorothy and Sarah’s car for that matter (we’ll get to them in a sec) He was still a pup when he met Val, he adores her and believe me, the feeling is mutual! I don’t even think she knows how huge a part of my life she plays right now, she’s my sounding board and confidante and I couldn’t begin to count how many times a day I mutter the words, Val says ….

Now everyone in the Hexham area must know Dorothy Blackburn, if you don’t, well shame on you! I’ve known her all my life, she’s lived up the road from my Aunties for years and before that near us too. I see Dorothy everyday apart from her day off which is more than well deserved. It’s quite important that I have Dorothy particularly on my morning calls, mornings and evenings are my worst times but my Mam is about for the evenings. Twice Dorothy has noticed that I wasn’t quite right and has phoned my Mam to come home and the GP has come out to see me, I was quite unwell. You see, I might think I’m alright but I’m not, not all of the switches have turned back on in my brain yet so I think I’m fine, my perception button is still asleep, if a different carer had come on those days who didn’t know my medical history or knew me as well as Dorothy, they’d have thought I was ok, anyone would, it’s not neglectful, they just don’t have anything to compare it to or go on, that could be normal for me and let’s face it, if anyone read my care file, they’d be surprised I was still here! Dorothy has also seen a vast change in me, from hardly being able to use a knife and folk and pulling myself around on the furniture to taking much more steady steps and being more alert and lucid, well, after all my cylinders are firing or the ones that still work at least. My Mam feels confident enough to go to work knowing Dorothy will shortly be with me and if anything isn’t right, she’ll get a phone call. Dylan adores her, he loves his Auntie Dorothy, I don’t blame him, she just has that quality about her, he goes mental when he hears her coming through the door. When she was on holiday, Dylan heard the key in the door and went berserk, barking, grabbing his toy and doing little excited hops but Dorothy didn’t open the door, it was someone else, well, he didn’t do a very good job of hiding his disappointment, his face said it all – you’re not my Auntie Dorothy and with a half hearted wag of the tail, he threw himself into this dog bed with a big sigh, he’s such a villain! He’s on Dorothy watch from around 8am, he’s at the window waiting and as soon as he sees her car pull up, WOOF! WOOF! Sometimes she even gets to the door before he hears her but then the greeting is even more excitable! I’m sure it’s a game to him and I’m sure he thinks Dorothy only comes to see him too! Me and my Mam would be lost without her!

Sarah Barrass, not many 24 year olds have had to learn the hard lessons of life she has in just the short time I have gotten to know her. Please don’t be thinking she comes in here full of woe and whinging to me, far from it, she empathises and shares experiences to show she can relate to whatever’s been happening in my life, I think we’re firm friends for sure. She has a much older head on her shoulders than she should, bless her. When I’ve been in a zombie like state with all the medications and morphine etc she’s sat with me a little longer to make sure I was ok and safe. We call her little Sarah as an endearment but she’s as tall and as thin as a bean pole, she’s always cold and wrapped up tight cos there’s just nothing on her. I need to invent an electric blanket type coat for her to keep her snug. She comes and sees me on a Wednesday, though saying that, she came here today and if my bashed up brain serves me correctly, then it’s Tuesday today, anyhoo, she took over the Wednesdays that Sandra Miller used to do before moving on, I don’t think Dylan has quite forgiven Auntie Sandra for leaving but he’s happy with the suitable replacement that is Auntie Sarah. Sarah and Dylan, well for Dylan it’s true love, he brings her his favourite toys, he cuddles in with her, he lies on her and looks all doe-eyed, he even sits behind her and puts his arms around her in a furry Dylan hug, he’s quite pathetic when it comes to Sarah, he really is!

Chelsea Exton is a no nonsense kind of gal, she knows what she likes and what she doesn’t. Under the bravado and efficiency is a lovely big hearted and caring young woman. Chelsea usually comes to see us at lunchtime. I say us because yet again, she absolutely loves Dylan and Dylan loves his home girl Chelsea, he even poses for a photo or two. There’s been days where Chelsea has arrived and I don’t want anything to eat because I’m feeling too nauseous from the meds or I don’t feel hungry, well I often don’t because the hunger switch in my brain is damaged. I had someone make fun of me about this because I’ve put 4 stone on since my accident so in their mind I should have been as skinny as a lat “Forget to eat, have you seen the size of you, yeah, you definitely forget to eat!” Educated folk will know that’s not often the case with someone who can’t walk or do much for themselves, plus when I was eating it wasn’t often good food. Until just recently we were on a extremely low budget so we had very little fruit and vegetables and reliant on cheap economy type foods that aren’t often classed as food. Chelsea always tries her hardest to get me to eat something, even a yoghurt bless her. I love it when she pretends to tell me off for cancelling her call, there’s been times where I’ve been taken to Hospital or to an emergency GP appointment or best of all, on a rare occasion someone has taken me out for the afternoon. The cheek and ribbing I get off her isn’t misplaced or inappropriate, it’s from building up a relationship and getting to know someone over time. It’s being able to judge whether someone needs cheering up or needs to hear some reassurance. She’s bred from good stock is wor Chelsea, she’s Sarah Barrass’s sister.

So reading a few little bits of my experiences with carers, are you shocked to learn that they get minimum wage, no sickness pay, only statutory sick pay? Are you shocked to learn that these carers can legally work a 15 or 16 hour day? Val is a little different but she has time constraints and so many folk to get around and more and more is being asked with very little in return! Tynedale is a bloody big area to cover and it isn’t the easiest or quickest to get about! I’m considered an easy client, hey, keep it clean! These carers are people’s life line. For want of a better word, I’m one of the very lucky ones, I have friends and family around me, I have support, I can pick up the phone and have a natter anytime I want. Many don’t have that, believe me, please, these carers are a godsend. They sleep over at peoples houses on sofas and on uncomfortable foldy up beds, while their own family is fast asleep back home in their own, familiar bedrooms. They cook and clean, they bathe and dress folk, they take them shopping, even if that means pushing them in a wheelchair up Gilesgate bank! I can’t even begin to explain to folk who don’t know the area or have never pushed a wheelchair, how much of a slog that is! Bloody hard work, believe me! But they do it because it’s that persons quality of life. My Mam has been a carer, my Aunties, my cousins for years but until you live something you can’t truly know. I feel very humbled by the carers that have crossed my door. They’re so much more than the person who wipes bums and gives you your tablets, it goes completely beyond that and this experience will stay with me forever. I honestly feel their rate of pay is atrocious, I know we all get outraged about the treatment of our Doctors and Nurses but that’s a different circus of monkeys. I really wish the owners of these company’s and the fat cats could do one single shift these carers do, to witness how reliant housebound and bed bound people are of them, how beyond the call of duty they go and then honestly say they are paid adequately. I reckon they’d be a hellish pay increase extremely quickly if that happened. There’s some so called carers out there, like the one I had a bad experience with, that don’t deserve a dime but there’s some out there that deserve a bloody gold mine.

For Val, Alison, Jennifer, Helen, Carol, Marg, Sandra, Chelsea, Charlotte, Paul, Cynthia, Sarah, Fiona, Dorothy, Janice, Judith, Tracy, Terri and many, many more.

Carer – a family member or paid helper who regularly looks after a child or a sick, elderly, or disabled person. *EDIT* Unsung heroes.