As you may know I recently started a new job in elderly care home run by Swindon Borough Council and shortly after I realised that’s the best care home I’ve ever worked in, and because the difference between this one and everything else I knew so far is so huge, I wouldn’t be surprised if it was also the best one in the entire country or, who knows, possibly even in the world? I really don’t say that because I worry my employer is monitoring my blog. Please refer to my other posts about it, but what does the trick there is that the building is heavily adjusted to the needs of people with dementia and that makes such a massive difference and eliminates chaos that everything becomes easier, and that as a result reduces stress.

Mind you, you know how I love speculating what other people may be thinking and I coined a theory why our residents are so kind and happy vast majority of the time. I believe they’re playing a game on staff – most of them don’t seem to have any understanding they’re in a care home, although they all seem to realise it’s not their real home. They also frequently mentioning they don’t have money (for cup of tea, biscuit or even the toilet), I’ve never experienced that in any other care home but this question is a proof that they didn’t loose all the understanding of how things work in life. So possibly they still understand some other concepts too, despite having dementia.

I now believe they’re all playing The Good One. Because when you are in kind and supportive environment you get treated better if you’re nice and considerate and if you are in stressful environment you get treated better if you’re argue. Of course whether they argue with us or not they will get the same level of care, the same meals and we’ll make their beds the same, but they don’t realise that. I came up with this a few days ago and today experienced something that was very clear indication that my thinking is correct. Basically, after dinner I asked a resident if he’d like to go back to the lounge and sit ‘in a comfy chair’, how this is being called. He did and then, like 5 minutes later he called me so I came up thinking something is wrong and he said ‘You told me to sit in a comfy chair so I’m here’, and he smiled in such a lovely way. I was shocked! It was like if he was saying ‘Look at me! I’m being cooperative!’

Possibly what he was thinking was: I don’t know where I am and what’s going on but the place seems to be alright and the food is good so maybe if I behave well, they’ll let me stay and everything will be alright?

All the experience with this care home made me reevaluate some believes I had about social care. I’m thinking now, possibly I should start posting about those things that I’ve seen while working in care because things really need to get better. The stories that end up in media are always about some horrendous issues but the truth is that there’s so many small issues that are never picked up and made right and they all have a common theme about them that I believe we need to define a new type of abuse to make people more aware of how they make choices on belhaf of residents. I’d call it ‘abuse arising from social perception’. A mild form of that could be if you take care of a person who’s hands are shaking and he’s finding eating with knife and fork difficult and gets himself a spoon from the drawer but the staff takes the spoon away because ‘if he eats with knife and fork it looks like we’re making an effort to teach him’.

Or imagine a person with Prader Willy syndrome (a genetic condition that causes people to be obsessed with food) who isn’t even really that fat. You put him on a strict diet because ‘if he looses some weight it will look like we’re really trying to take good care of him’ but as he looses weight he becomes more and more obsessed with food and tries to get to the kitchen more and more. There is no physical barrier that would prevent him from getting in and the staff is told to act like kitchen cerbers – which by itself is another example of social perception abuse because physical barrier gets replaced with social one, the effect is supposed to be the same but it ‘looks better’, like if you don’t deny residents access to food, while in reality you’re doing exactly that.

One day that resident manages to get to the kitchen while staff is not present, gets to the fridge but can’t find any nice food there (since he’s been put on the diet ready to eat food is kept in a different fridge on the permises that he has no access to) but he finds a packet of raw chicken, opens it with his hands and eats the meat.

Or, possibly you have a resident who enjoys walks. One day he gets put on short term antibiotics that makes him wobbly so no one takes him out. After a few days the manager asks an inexperienced member of staff to take that resident for a walk. The staff initially refuses because she’s concerned the resident may fall. The manager then says ‘but you have to because he hasn’t been out for X days. It looks bad on us’. The staff agrees but as they leave through the door she thinks ‘if I come back after five minutes it will make me look like I’m lazy so I need to walk him for a bit longer, like on any other day. Maybe he will be alright?’

Unfortunately, as they come back the resident is really struggling and finally falls at the care home patio and hits his forehead against the company car. There is a massive bang that gets the manager out and she asked what happened. ‘He got really wobbly and hit his head against the company car!’ Fortunately the resident gets up on his own and there is no sign of bleeding. The manager then decides he will be fine and leaves. The unexperienced staff thinks ‘wait a minute, didn’t I get told that every accident needs to be reported on a designated form and that it’s a company policy that after a head injury they need to be taken to A&E for a check up?’

The second and third example could result in harm so are quite serious, while the first one seems to be less so, although I’m sure it was causing the resident unnecessary stress. But what I think is really bad in it is that the staff used his understanding of social norms to make decisions. Social norms are now what we’re born with, they are learned and sometimes unnecessary.

Every human being in the world needs food and sleep to survive, regardless of which culture they live in but in some cultures people don’t use knife and fork and still manage to have happy, fulfilling lives. Therefore eating with knife and fork is not necessary for survival, it’s just a social norm that the resident not only didn’t care about but also due to his learning disability he didn’t understand it. But the manager decided that due to her understanding of social norms she’s superior and it’s ok for her to force them on the poor chap.

Neurotypical staff is especially prone to this type of abuse bus some are better than others. But you know who absolutely excels at it? White British and the management. It also seems to me that this type of abuse is much more prevalent in learning disability care homes rather than in elderly care homes. I bet that is because there’s more money to be made in learning disability business and the competition is also greater. Businesses that offer learning disability care are trying to get as much money as possible from the government so they need to ‘demonstrate results’ of various interventions while with the elderly care everyone seems to accept the fact that ‘they had their lives’ so it’s absolutely ok if they sit in the chair the whole day and maybe do some ‘chair zumba’ once every couple of days.

So as I was reflecting on all of that, I realised that I was getting something wrong about what behaviours are really unacceptable in people who work in care. As I said, I don’t think I’ve ever seen staff being impolite in elderly care homes but I’ve seen it in learning disability care homes. I always thought that raising your voice on residents is unacceptable, unless you want to alert them of danger. But recently I realised that there’s something much much worse: having a judgmental attitude. If you raise your voice on someone it could be simply because you’re not coping in that very moment, which could be due to stress, while you may be a caring person in general. You should reflect on that and look for ways to avoid that behaviour in the future and things may as well be fine for you.

But if you’re judgmental, you’re always bad. You won’t make an effort to reflect what works well for the residents and what doesn’t and therefore you’ll be making the same mistakes over and over while blaming residents if your actions don’t have positive impact on them. There is no hope for any change if you are like that, therefore you should be eliminated. Unfortunately, this behaviour doesn’t draw much attention like shouting does so may be difficult to spot during short inspections, especially that during an inspection everyone is on their best behaviour and really concerned about how they word things.

After realising the above I somehow transferred that understanding onto my employment drama and it does look like Home Group is best represented by the acute bad behaviour while my other employer, this one that dismissed me, is best represented by the judgmental attitude.

The thing with Home Group is that, although I didn’t work there for that long, I actually had some positive experiences there and met some people there who seemed to be really serious about applying company values and were ready to challenge their own understanding of social norms to make things work for me better, and I met one of those people during my first employment there, before I even realised I’m autistic; but also before I met That Person who ruined everything with her extremely good manipulation techniques.

While with the other employer, who never actively bullied me (although they possibly bullied me passively) they got rid of me because I ‘knew too much’. I worked in the same company when I lived in Reading, in a learning disability care home that had issues that weren’t being addressed properly. A resident there was being physically aggressive towards both staff and other residents. We were given tactics to deal with those behaviours but they never worked for long. Despite of serious learning disability (and what I mean by that is that he didn’t understand most common words in everyday vocabulary, for example didn’t know what a ‘cup’ was) he was very good at understanding hierarchy and behaved far better when the manager was present so our concerns were constantly being dismissed.

We were also being told that he can’t be put on medication to manage behaviour because he chooses how to behave, which was most likely true because he would frequently come up to other residents and smack them while looking at staff and laughing. Mind you, he wasn’t physically strong so it was unlikely that he’d really hurt someone. One day, however, we realised he had a very strong jaw…

Mind you, the only drink he would be happy to have throughout the day was coffee. He would have like 12 a day. One day a colleague suggested on a staff meeting that maybe we should be getting decaf coffee instead because this is really not right and in response she was shouted at by an area manager that decaf coffee is an abuse, they deserve real coffee like everyone else. And I thought like, wait a minute, I don’t have learning disability and I highly doubt I’d be able to manage my behaviour if I drank 12 coffess a day, so why we’re expecting this from someone who doesn’t understand basic vocabulary?

He was also very sensitive to every subtle change in social dynamic, what I mean by that is that no matter how well we were coping with his behaviour on a regular day, the worst of it would come back immediately when he saw a new member of staff. I learned to manage his behaviour by introducing strict routines and adjusting timing so that it worked for him. For example, instead of serving dinner at 6pm, I offered everyone a snack at 4 and dinner was at 7; this way the snack became an activity that he was looking forward and I could give him his meds while he was eating pudding – there were strick timing for medication and if I’d give it to him just like that he would most likely refused to take them. There was always food spa after dinner as well, to keep him happy.

It was mostly working and I was proud of myself for working that system out, but still, when I sat down in the evening to fill in the daily books and he knew that there’s nothing else to look forward to, things were getting bad again. Or, possibly if I worked with someone who was a driver and would promise that resident an evening drive to get him to behave himself throughout a shift, things were getting pretty bad at the beginning of the shift. It seemed to me like the resident was testing the water while possibly not being able to decide who he should be friends with, but then that other staff would say ‘sit down if you want to go on a drive later’ and that guaranteed an easy shift.

But if I worked with a new staff, all the behaviours were present the entire shift and nothing was working. Think of a behaviour that you’d find difficult to deal with if you worked in care, and it was probably there. Not just hitting but also spitting, pulling curtains and other items of the wall, banging walls, windows and tv, throwing objects, removing items from the kitchen and throwing them all over the floor, weeing on the floor and even masturbating while standing half naked in front of other residents – all that was accompanied by a deceitful laugh. While seeing that I was like: yes, he does choose his behaviour. But I’m unable to get him to make a different choice. He needs a serious medical intervention.

Mind you, none of those behaviours were being reported properly. No one else was doing that and I was aware that if I start, it will make it look like it’s just my issue because no one else has this problem. Whenever we talked about those to the manager, we were never asked to fill an incident form.

It was difficult but things were kind of working and only occasionally I had this idea that this isn’t right but I knew that I sometimes misinterpret things and get overly worried (I didn’t know I was autistic at the time) so I thought it was just me. Because if we were in trouble, people would pay attention, wouldn’t they?

I don’t actually remember what triggered the beginning of the end, or possibly I didn’t get told. I remember though that there were some unfortunate coincidences that made the house look even worse than how it was. Like for example, around a year before it got shut down, we had a particularly difficult day, the worst day that I had in that place up to that point (because worse was still to come) and that’s when CQC inspector turned up.

Anyway, suddenly the politics all changed and we were told to report every incident in details. At the same time we were experiencing severe staff shortages and couldn’t cover all the shifts with overtime any more so we had to rely on agency staff, which obviously caused serious behaviours. At the same time council was having an eye on us so we had to demonstrate that we’re making an effort.

The house had only 3 residents so occasional lone working was allowed there and I actually preferred it as that resident wasn’t then playing staff against each other and was much calmer. However, at that time we were told that this is not longer allowed. I did explain to the ‘decaf coffee abuse’ manager that if I can’t work with permanent staff, I’d rather work on my own than with an agency because that’s what causes behaviours and I was told that we can’t allow that any more for safeguarding reasons. Great reasoning, isn’t it? Create a situation that causes issues and tell everyone that you’re ‘putting things in place’ to solve them. Another example of abuse arising from social perception.

I guess I will stop giving more details as this post is extremely long. I’ll come back to that at some point later as the entire subject absolutely fascinates me. What I wanted to say is that, by working in learning disability care for so many years I am starting to get the idea that the entire system is designed is a scam. Yes, the people get food, shelter and, if they’re lucky their life may be not too bad but the copany that provides care constantly comes up with excuses to ask for more money because ‘those people we look after deserve quality of life, the same as everyone else’ while the extra money is rarely used on things that make life better for them; it’s mostly used on pretending, like possibly providing ‘sensory room’ that feels so suffocating no one wants to use it and with time it ends up being used as meeting room. But the home has sensory room and that’s what matters!

That’s why I lost my job: because I knew too much and was really bothered about it. They knew that because I’m autistic I have very black and white thinking and will be looking for issues everywhere to give them an opportunity to improve. But they didn’t want to improve; they preferred to cover things up. And they didn’t even have anyone who manipulated them into getting rid of me – they did it all by themselves, while knowing that is was them not following proper procedures that caused me such a severe stress that I ended up in psychosis a year and a half earlier.

So possibly I should forgive Home Group? Maybe they weren’t really that bad. What happened to me was like accident but they didn’t seem to be judgmental so possibly there’s still hope for them? And anyway, you know… I was briefly targeting them on Twitter but they did absolutely nothing. I thought that possibly they could at least block me, but they didn’t react at all. And you know, it gets boring after a while.

I presume targeting them on Twitter was like a mini revenge. Or possibly even a symbol of revenge. But due to my autism I’m very good at understanding symbols so I’m OK with that.

I was also contemplating forgiveness – in general terms – on the blog a few days ago and that made me ask myself who do I have to forgive and somehow Home Group came to mind. I could even forgive That Person, this one who caused all the issues. I can forgive her on the soul level but I can never have her back in my life.