As a disabled person who receives 24-hour care in an independent setting, I have seen my fair share of incidents within the care industry, some good, some bad and some downright hilarious. With roughly 2.1 million people needing some sort of care service in Britain and the drastic cuts that the government has made to the industry the care system is at breaking point. However, has anyone ever thought what it is like living with carers and how the industry can have both a positive and negative effect on people receiving it? Here are some of my own personal experiences of having care.
One of the amazing things of having care is that you get to meet people from all walks of life, some you would rather forget instantly but every so often you get one carer that walks into your life and becomes a life long friend, maybe even family. I have been very lucky and blessed to have this happen to me on several occasions and have met some amazing people on my journey. The first time this ever happened to me was at primary school when I was eight years old and a young volunteer called Lucy came to the school in order to gain a bit of work experience. Lucy was 18 at the time and fresh out of school she decided to volunteer at my school as a care enabler just for a term. Me and Lucy just had an instant connection straight away, we really hit it off and on the last day of term before Christmas she was so upset about leaving the school and not being able to see me she burst into tears while we were saying bye to each other. Fortunately, my mum understood what was going on and we exchanged numbers with Lucy so we could keep in touch, we have been really close friends ever since.
I am in a very fortunate position now that because I have been in a caring environment for about 30 years, whether that be in an educational setting or a home environment, I’ve become pretty good at spotting when I can get on with a particular carer, and I like to think I get it right more often than not . You will always get one moment with a carer when you know whether you’re going to click or clash with them. This happened with one of the carers I have now, Steph. Me and Steph have known each other for 10 years now and our relationship has grown to the point where I now consider her part of my family, she’s like my sister. However, I remember when things first clicked for me and Steph, we had always got on really well but the moment I realised that Steph was going to be a very special person in my life was at Derby train station. We were going to board a train to Leicester to visit my family, we had gone up in the lift to the bridge in order to get to the platform and on the other side of the bridge Steph just starting walking down the stairs leaving me at the top in my wheelchair. She got halfway down the stairs and turned around and said to me “What are you doing waiting there? Come on.” I shouted down to her saying I couldn’t get down the stairs because “I’m in a wheelchair.” She realised the obvious and we both burst out in fits of hysterics. Now I know a lot of people are thinking oh my god how could she do that, that makes her a terrible carer but for me it actually made her the perfect carer. You see Steph forgot that I couldn’t go down the stairs because she doesn’t see me as “in a wheelchair”, she doesn’t see the “disabled” part of me, she sees me as Immy, a man, a person and a friend. That doesn’t mean that she doesn’t recognise that I have a disability, of course she does, otherwise she wouldn’t be my carer but it means she doesn’t treat me as a poor disabled man, she recognises what I can’t do but also knows what I can do and wants me to be the best version of myself that I can be and that’s why I love her so much.
As well as having its benefits there is also a very dark and ugly side of care that unfortunately some people have to experience including me. Not every carer is nice and loving and not every carer is in the job for the right reasons. Obviously, there are some carers that you don’t get on with due to a personality clash, and that’s alright, it doesn’t make them a bad carer it just means that two of you are not compatible to work together and this has happened to me a number of times. However every once in a while you will get a bad apple and unfortunately one apple that I encountered wasn’t just bad, he was rotten. I am not going to mention the individual’s name because I genuinely don’t want to damage any future employment opportunities he might encounter, however for almost two years I was controlled by this individual while he was on shift. Unfortunately at the time, the care agency I was with didn’t have any other male carers that were suitable for me and this person knew it and used it to his advantage, meaning he knew he could get away with almost anything. He would come on shift and refuse to take me out anywhere instead only interested in lying on my sofa watching his tablet all day. The only way he would take me out anywhere was if the agency would agree to pay him double pay and if they didn’t he just point blank refused, he also refused to do any housework, saying it “wasn’t a man’s job” and leaving my other carers to clean up his mess. The guy was obsessed with calling me “gay” and not in a joking manner, he would deliberately say it to dent my confidence because in his mind I wasn’t a real man because I talk too much. Everything I did or wanted to do was “gay”, going to the cinema was “gay”, going to the park was “gay”, my coat was “gay”, celebrating Liverpool scoring a goal was, you’ve guessed it, “gay”, and this was all said in a dominating and alpha male voice to intimidate me, I’m not gay but in his mind I was. As our relationship really broke down he started telling lies between me and my other carers in order to get us to argue amongst each other as well as sucking up to my family, especially my dad telling them how much work he did around my house, all of this designed to put himself in a position of power on the care package. After a year and a half I finally found the courage to let him go and the only way I can describe it is it was like when you finally get out of a dead-end relationship and you realise how much better your life is now. All of sudden I was able to get out and be myself without being worried that he was going to judge me by what I said or how I dressed, I was able to be me. I don’t know where this person is working now or he is working in care but I generally hope that he has learnt from his mistakes and doesn’t put anyone else through what he subjected me and my other carers to.
The lighter side
When you have carers all the time you can get good ones and bad ones but occasionally you’ll find one that’s just downright hilarious. Krystle started working for me about 10 years ago now and after her first shift when she told me my sister’s birthday cake looked like poo I knew straight away we were going to get on. 10 years later we have such a beautiful relationship and I do consider her as part of my family even though she’s dippy, like everyone we can argue like cat and dog but that’s to be expected when you have someone for 3-4 days every week. Like I said before Krystle has a tendency to be a little bit dippy and that’s putting it lightly and when she’s not playing practical jokes and jumping out on me trying to scare me occasionally she will do something that will just have us in absolute hysterics. One of my earliest memories of working with Krystle was when she was doubling up with the training manager of the agency that I used to receive care from, I had just got out the shower and the two of them were preparing to apply cream over my body for my eczema. That particular day I cream was running low and there was only a little bit in the bottom of the tub, it was one of those tomato ketchup scenarios where you had to take the lid off and shake the tub really hard in order to get anything out, Krystle started doing this determinately in order to try to get something out of the bottle. After about the fifth attempt she tried one more time giving it an extra dose of welly and this time and she was successful, however because she shook the bottle so hard the bit of cream that she managed to fling out the bottle missed her hand and landed right on the end of a particular part of my body, I’ll leave that to your imagination. Needless to say it is very embarrassing and while me and Krystle cracked up in hysterics the training manager very quickly wipe the cream off in a very professional manner but joined in laughing. Cream flinging wasn’t one of Krystle’s fineness moments but it was downright hilarious.
Part of the challenge of living with care is been able to adapt to all sorts of situations as you never know what’s around the corner, this is especially the case when you’re planning a day out and the unpredictable British weather can lead to some pretty memorable times. A great example of this is when me and Krystle went to the cinema once and it was snowing, we presumed as we were getting a taxi that the weather would not be that much of an issue with my wheelchair, however we were proved wrong. As we came out of uni halls in order to get into the taxi I quickly realised that my wheelchair had no traction and I was literally just sliding all over the place. As Krystle stood there laughing I desperately tried not to drive my chair into the bushes for about five minutes. We quickly realised that we need to do something to my chair as there is no way it was moving at all in a straight line, then Krystle had a bright idea of jumping on the back of it in order to help it gain traction. Surprisingly this actually worked and I had to drive through the courtyard of the halls as Krystle was hanging onto the back of my wheelchair for dear life while I tried not to throw her off. The whole incident left everybody in hysterics including some of the security officers at the Uni halls.
I’ve been very fortunate in my life to build some great relationships with a number of carers and despite wanting to I couldn’t put everybody into this blog but hopefully you know who you are. Living with the care can present all sorts of challenges both good and bad but as I’ve demonstrated in this blog if you have the right sort of team around you with people that you just get on with it can really enhance the quality of your life and make memories that will stay there for a lifetime.