Category: Autism

This evening I was finally well enough at the time one of my favourite care workers was here to have a proper hair wash, with water and shampoo. The last time was in July so it was desperately needed. I had used shampoo caps in between, but they stop working so well after a couple of months. It’s taken a couple of hours but I’ve now stopped shaking from the pain and exertion so I can write this blog post. I am happy 🙂

The last few weeks I’ve had quite a few new care workers. Some I’ve missed by being asleep when they’ve come (if anyone can figure out how to have set time care calls when you have no sleeping pattern, let me know) but others I’ve met.

Most of them come with one of my regular care workers, especially T, who is my main evening carer. T is one of my favourites, who I know very well at this point and trust her with the tasks that are most painful to me, such as tonight’s hair washing and having a body wash earlier this week (might have been yesterday? I can’t quite remember). She’s also a pretty good judge of who I’m likely to do well with and who I’m likely to struggle with, so if she’s previously worked with the new care workers she lets me know how it’s been.

Some of them have been fine. I have to have things done in a certain way or it makes me very anxious, but I have written an instruction book that goes through everything step by step. The ones who are willing to read the book and follow it usually do okay. If they listen to T as well, it can go pretty well, and usually I’m less nervous about their next call. Tonight I had a new care worker who listened, followed instructions, and I got on with quite well.

Some of them… not so much. One, who luckily left after a few weeks, was genuinely scary. Not because she was abusive or anything, but because she basically needed care herself. She needed every instruction given to her multiple times, and even then would get it wrong. I’ve never known it take 20 minutes to fill my Hydrant with squash before, but she took that long even with help. I heard some stories about her from the other care workers that were terrifying (including trying to hoist someone incorrectly and nearly dropping someone down the stairs), and just mentioning her name to those who had worked with her caused despair. I was surprised that she hadn’t been fired but luckily she left herself.

Others just don’t listen to the more experienced care worker while here. I find having two care workers in my room overwhelming while having personal care done, so usually one goes into the kitchen to sort my drinks and food and such, while the other does my personal care. It works well, and means we get everything I need doing in the time I have. The book the care workers have to fill in is kept in the kitchen, where there’s a brighter light (as I’m light sensitive), there’s the counter to lean on and it is better for me.

Last week I had one that just wouldn’t listen to T. It was frustrating for both of us. Instead of doing the book in the kitchen, she decided to bring it into my room and stood in the middle trying to lean on the back of my wheelchair to fill it in. There’s not very much space in my room so she was just getting in T’s way, and wouldn’t move when asked. I’d ran out of baby wipes and was just standing there while T was looking for the box with them in, which meant she couldn’t find them and we had to use my more expensive bath in bed wipes. Turns out the new care worker had been pretty much on top of them. There was also just something about her that made me feel very uneasy, and by the end of it I was more knackered and overwhelmed than normal. The next time I saw T she told me she was about as helpful at the other calls.

I got my rota for next week and saw that she’d been assigned to work with T for two nights. I had a suspicion that T would be asking for that to be changed, and when she came tonight she confirmed that I was having two of my more regular, liked carers coming instead. She even talked one of the care workers into coming in on her day off so she didn’t have to work with that new care worker. I am relieved, and there’s only one completely new care worker on my rota for next week.

There is a lot of turnover in care work. Most of my regular care workers have been with this agency for a year or longer, but the organisation has gotten worse over the last year or so (see also the saga of it taking eight months before they’d stop sending a care worker here that I’d banned) and it’s resulted in quite a few of the best workers going elsewhere. I try to give new care workers a chance, and know that sometimes first impressions can sometimes be wrong (one that I thought was super patronising the first time I met her turned out to be lovely and is now one of my favourites). Sometimes though there are care workers who I’m just incompatible with.

Of the over 80 care workers I’ve had with this agency, I’ve only had to ban four of them, which considering I’m autistic and picky about how things are done is not bad. There have been some that I only saw once or twice before they left, often because they realised that this job wasn’t for them. It’s definitely not paid well enough, and I suspect some of those who don’t last only started because it’s one of the few jobs that is always seeking new people. It does take a certain set of skills though, and not everyone has them (neither Johan or I could do it, even if I were perfectly healthy). My favourite care workers are those who are doing the job because they want to, and it shows.

A couple of years ago I think the care worker who was a danger to clients and herself wouldn’t have got past the shadowing stage. When I joined the agency it was the best in the area, was decently ran and most of the care workers were happy. Nowadays, not so much. They took on too many new clients too quickly, which meant needing a lot of new care workers quickly and overworking the ones they already had, resulting in quite a few quitting and others threatening. It wasn’t unusual for one of my favourite care workers to end up with 90+ hours a week, which is just dangerous, especially on a regular basis. It took her threatening to quit before they reduced her hours to something a bit more reasonable (though still a lot higher than 48 hours a week) and she’s starting to learn to say no when asked to do more.

For me, my main issue is the disorganisation. I need to know who is coming and when, and to be informed of any changes. If this is done, even at short notice, then I’ll be fine. If it isn’t, and these days it’s unusual for me to get told of changes, then I can’t cope and panic. This makes me more ill, and has caused problems for Johan as he’s often had to abandon what he’s doing to be able to come and calm me down. The agency has been aware of this since we joined, and one of the owners has an autistic son so should know why it’s needed.

What doesn’t help is I get a rota on a Friday that is for the following week starting on Monday, but by the next Friday the weekend calls have often changed, and though the care workers get an updated rota I don’t. I don’t understand why they don’t just give me a rota on a Friday for a week starting the Saturday, so if anything changes at the weekend it’ll be reflected in my rota.

I also know that emergencies happen. They have Johan’s mobile number, and they are supposed to ring or text him if something happens. Even a couple of minutes notice (Johan messages me if he’s out so I still find out) makes a big difference if they can give it. I have some care workers now who refuse to cover for my calls unless I’m told they’re coming, as they’ve seen what it’s like for me.

The worst is when they change the call time and don’t tell me. I’m pretty okay with care workers being late, as stuff happens, calls can overrun, there can be traffic and such. I do start to worry if they don’t arrive during my call time though (half an hour for my lunch and afternoon calls, 45 minutes for my evening call), especially as I’ve had care workers not turn up in the past (mostly with previous agencies). Johan struggles to initiate communication but if someone doesn’t turn up he usually can let them know and find out who is coming and when they’re likely to be here (sometimes it’s just a bad emergency, sometimes a care worker has just not turned up and they have to find cover).

What I can’t cope with is them being early. It took me years to manage not to panic if they arrived the allowed 15 minutes before my call, and I now have alerts set to go off then so I am ready for them. Sometimes though they change the call time to earlier than is on my rota, and don’t tell me. My brain explodes and I just can’t cope with it, and often the care worker has no idea what’s wrong as it was correct on their rota. If it’s a combination of an earlier call and a new care worker, I often end up in meltdown or shutdown. I wish I didn’t react like that but receiving personal care is already scary and painful, I struggle with strangers especially when alone (if Johan knows I’m getting a new care worker on a single call, he tries to be here with me) and changes to my routine are difficult to cope with. If they just let me know, everything is fine.

Wow this turned into a bit of a rant. Compared to the previous care agencies I’ve had, this is still the best, even if it is going downhill a bit at the moment. Most of the care workers I have are nice, my most regular ones are awesome and I get on with them great, and most of the time everything goes as well as it can. Previous agencies have included care workers deliberately causing me pain (and being told by my then social worker that I just had to put up with it), calls being missed and not having anyone cover them, not sending me rotas at all so I panicked at every call, and even being put into special measures by the CQC and losing the contract with the council. In comparison, this one is much better. I just wish they’d sort things out so it is better for the clients and the care workers.