At the end of last year and then the beginning of this year, I went back to the social services to get more hours/more elements for my care package because my mum’s health was clearly getting worse, then she was in hospital and it was clear her role as my carer was over, as, well, at the start of her hospital admission it looked like she would be coming home in need of a full care package herself.
It took over 3 weeks for their “emergency” assessment to take place, which was an absolute farce and I can’t even be bothered to get into it, but it ruined everything I already had in place with my PA, and then it took until after we lost my mum for the new “emergency care package” with a care agency to start.
Now as well as it being frustrating because it displaced everything I had set up with my PA, which meant I had to change the set up with my PA, these tea calls, a half an hour call, was meant to be the carer comes, makes my tea, washes the dishes… and somehow helps me get changed. At half 5 in the evening. (Also, my PA was meant to come all 7 days a week and leave lunch out for 3 hours because apparently social services don’t provide dinner calls anymore. Cold beans on toast, anyone?)
With only half an hour, I was stuck only to microwave meals that could be made within 10 minutes, and had to scarf it down quickly so they could do the washing up before they left. I didn’t have time to get changed even if I wanted to. That wasn’t their fault but you could see some of them were ready to go as soon as they put the food out.
“That all, then?” they’d ask, picking up their bag and about to step out the door.
“Er, no, you have to also wash the dishes when I’m done…”
But that wasn’t the most frustrating part. (Even my acid reflux/food reflux issue being the worst it has ever been wasn’t the most frustrating part)
The most frustrating part was how much they made me feel like my… everything, was wierd and bizarre and different. I know the door situation is odd, and maybe the layout where the bathroom is, is odd… I mean, no! You know what, I don’t understand what could possibly be so difficult to understand about the instructions “Yeah it’s through that door there in the middle of the wall, and it’s the first the door on the left.” It’s the first door down a little corridor, the door to it is less than a foot away from the hallway door. Yet the amount of times people have come in, and just… gone down the hallway to the bedrooms, ignoring the big door in the middle of the wall, and ignored me correcting them, whilst heading into my parent’s bedroom. And I point!
But also, they’d come in, search around for the light switch for the kitchen- it’s right there by the kitchen door, they’d press all sorts of buttons on the microwave, changing the power percentage, and then not knowing how to turn the nob to get the times. They get too flustered to actually listen to me and i have to tell them to turn the microwave off and on again because god knows what new combination of settings they’d put the microwave to. And then they go “ahahaha oh your microwave! I’ll get the hang of it one day!” Well, maybe if you just… stopped and listened to my instructions? Maybe read the words above the buttons before just jabbing at them frantically? It’s a microwave. I’m pretty sure everyone else they go to don’t all have one specific brand and type of microwave and I’m the outlier with a strange one. Everyone must have a different microwave, and the microwaves can’t possibly be that much different from each other! But they never said they were the same with everyone else’s microwave, just mine, as if mine was some sort of strange object they’d never come across before.
I had one carer who wanted to rush through everything. I cook frozen veg in the microwave, the instructions are on the bag. I read out the instructions and I told her to stir at the time specified on the instructions. She stood right in front of the microwave, took out the veg when it pinged the first time… stood there with her back to me, and I couldn’t see what she was doing, and then she put the veg back in to the microwave and then served it up.
The middle was still frozen. “Well you read out the instructions, love” this carer said to me. “I followed what you said. I thought it should have been longer.” Other carers had been given the same instructions (Measurements and time), other carers followed the same instructions, and I had no problems. The food was cooked through just fine. Other carers also turned and talked to me whilst they stirred, and some even showed me to check I was happy.
Maybe the problem was actually she didn’t stir the veg? That’s the only thing I can think of was the problem. She just stood there with her back to me and didn’t turn around, and she rushes through everything, and more importantly, didn’t even check when she put it on the plate.
They say the attitude “If I want something doing right, i’ll do it myself” is a trauma response, because you’re continually shown that you can’t trust anyone to do things as right as you. And sadly, that’s been my experience. Things going so wrong because my parents dropped the ball. Friends letting me down. Teachers, doctors, you name it. The amount of things I have had to take control of or been left in control of so things would be done right, or the times I’ve depended on people only to be let down. I could make a really long list, really. And I really feel it with these carers.
I also feel it with my Dad, who has taken over the feeding and watering of me during the pandemic because I had to ask the carers to stop coming (one refused to wash their hands). He is the type of man who will say “No, it’s not in there” when looking for something, and then sit back down again without looking properly. And that’s that. Doesn’t matter if it’s something needed, he can’t see it so that’s that.
So I have to get up and get it myself. Which would sound like i’m just lazy if it wasn’t for the fact that I’m physically disabled and living in a flat that isn’t fully wheelchair accessible. It’s not easy for me to “Just get up and look for something myself”, if it was, I wouldn’t depend on carers in the first place.
And one time, going back to actual agency carers, I had a carer swear down she absolutely couldn’t find something I knew was in the cupboard, and I had my Dad going on that I mustn’t have bought it, I must have gotten confused, if they can’t find it then it isn’t there and I shouldn’t go on about it. Because apparently sauce with my meal isn’t a big deal. This is despite the fact that I saw my Dad put it in the cupboard the week before, when I bought it. But he couldn’t remember, and she couldn’t find it, so clearly I was wrong and mistaken.
The next day I went in to the kitchen – Again, not something easy for me – and I looked in the cupboard that I saw my Dad put the sauce in, and what do i find to the right of the door? The jar of sauce I definitely did not buy and absolutely was not there. Right there. Where I said it was. I’m a few feet lower than the cupboard. If I can see it from my height, I have no clue why the carer, at a more average height and actually able to look into the cupboard, couldn’t see it.
(The reason is she didn’t look properly, and it wasn’t important to her to find it, and so she clung on to my Dad’s explanation of me being an absent minded fool with a poor memory over my own word of telling her I definitely bought it and it was definitely in there.)
It is so frustrating that this is what I have to put up with. And I’m not looking forward to restarting the care package when the pandemic is over and I’m not at risk of carers bringing it in.
So i’ll have daily calls of people coming in, trying to put the light on from the wrong side of the wall, trying to start the microwave with the percentage button, trying to start the microwave with the deftost button, and giving me half frozen food because they don’t want to listen and don’t bother checking food on dishing it out.
And if i could do it myself, I’d do a damned better job, but I can’t, and that’s why I depend on other people in the first place.