Just another day in Carersville

Someone asked me the other day what exactly my role as a carer for Nick involved, and I muttered something about project management and admin. 
It is hard to explain all the things you do, often a lot of them at once, so I generally don’t even try. Other carers understand, and the rest is probably like trying to explain the minute complexities of your job, or how you manage a dog and a pram and two kids every day on your morning school run. You just get on with it and do it, that’s all.

Some days are relatively incident free, many not. There are constant issues and freak-outs and crises, but it seems to come in cycles. If you can bear to read it, I’d like to tell you about the last 24 hours.

Yesterday, I dropped round to Nick early because I’d done him some shopping the night before and had a bag of groceries and his bank card. Two carers were there, feeding him his porridge, sitting in the gloaming with the curtains closed. Nick was sitting at a strange angle with the castors of his chair unlocked, so with every laborious mouthful he skidded a little further away from the table, and the spoon. The carers were surprised when I mentioned it, but to position him in his chair and lock the castors has only been in the effing care plan since April and I keep coming in after they’ve gone and finding him shooting across the room. Not to mention the porridge all down his jumper.

Meanwhile the cream for his very cracked fingers had arrived. I’d had two long chats with the District Nurse and then the GP about this because Nick has developed some nasty sore looking fissures in his fingertips. Some of them were bleeding, though he says it isn’t sore and he hadn’t noticed. But the nurse and GP agreed it needed some attention – she’s prescribed a cream that the carers can apply twice a day.  I asked these two how it was going. They both looked blank. It turns out that they have been putting the cream on his bottom. His fingers look as sore and gnarly as ever but he’s got a bum like a baby.

Choose your battles, I said to myself between gritted teeth, unpacked the groceries and made a memo to call the DN on Monday.
Have a nice lunch, Nick, and see you later
On Saturdays he goes out for lunch with a PA. Just once a week. We had a lovely Welsh lady who used to come, tiny but strong. She didn’t make a squeak about the heavy wheelchair, but since she has left to look after a sick husband, none of the other carers from her agency will touch it. Nick has had different people every week, they come once and then disappear, and I feel increasingly frustrated because it is so important for him to have an outing and some company that isn’t me or Simon. 
He looks forwards to his Saturdays - and it is such  a godsend for me too, to have a break on a Saturday afternoon when I can go for a swim and just unwind and not be worrying about him. But lately it’s not been going well.
Last week he finally saw someone who seemed to be up for staying the distance and we were expecting her again. Nick had been thinking about where he’d like to go. We’ve agreed with the agency that while the weather is still OK, the PA will take him locally in the electric wheelchair to one of the many coffee shops and cafes around here, just minutes away. No worries about the cumbersome chair or getting in and out of the car.

It was a glorious autumn day and I was going to wander into town and have a bit of a Tiki tour, as our NZ rellies say, on the way. Charity shops, maybe see what’s in the market at my favourite fruit & veg stall, just stroll at leisure for once, then meet a friend for a coffee. I was literally picking up my keys when the phone rang…

It’s Margaret” – one of the PAs who’s previously been to Nick and then said she couldn’t cope. Not the one from last week, after all. 
Margaret was in a flap. She’d been trying to open the key safe for the last 45 minutes and it was jammed. With four care calls a day to Nick, it gets a lot of welly. She couldn’t get in to the building to Nick and of course he doesn’t hear the buzzer or answer his phone. I said I’d be right over.
I opened the doors with my key and we went in to Nick. I could see that Margaret was not keen on taking Nick out, “there isn’t time now” she said, “I’ll just do him a ready meal from the freezer and we’ll stay here.”
Oh no you won’t! I thought. Apart from having spent almost an hour fiddling with the key safe before phoning me – time that Nick has to pay for – he looks forward so much to his outings. He sits in the same place day in, day out, can’t leave the flat without someone taking him, and it is just not fair on him for her to take the easy option.
How long have you got left”? I say, looking her in the eye.
An hour.
Great! I’ll get the ramp out if you help him on with his shoes, you’ve got plenty of time to go to Hagglers Corner, it’s five minutes away. 
I don’t know where it is she says. I explain, and draw a little map. Nick knows, in theory, where it is, we go often and we went there for lunch just a couple of days ago, but in the heat of the moment his cognitive difficulties get in the way and he’ll forget.
What about the key? She says. Ah, yes, indeed, what about the key. I have a bright idea. You take mine, lock up and put the key through the letterbox when you go, and I’ll stay here to call the emergency key safe people and I’ll use the back door key. (Bonus of having had the locks changed in the summer)
Excellent. I wave them off.

Call the key safe people. Our offices are now closed until Monday. Whaaat? At this point my lip starts to quiver and I start feeling a bit wobbly. My trip into town has receded into the same distant place as my eye test and new glasses and haircut and all the other things I never seem to get time to do, and I text my friend to say I might have to call it off. My friends are used to this. Sometimes it feels like an excuse. I promise you it’s not, in fact even the best of them has no idea how many emergencies and curveballs we actually have. It’s endless. And the crazy thing is, it still takes me by surprise because it is impossible to anticipate. When I saved the emergency call-out number for the key safe company, could I have known that it was office hours only? or that this would happen on a Saturday afternoon? Could I have known that Nick would pull two radiators off his wall? And, Nope, still not fixed. Must chase again. 

Meanwhile, I call the care providers and we agree that later Simon and I will make Nick his dinner, feed him, give him his tablets and get him ready for bed, and they will cancel their call for tonight. They’ll wait to hear from us in the morning before trying to get in to the property to do Nick’s early morning medications.

I’m writing this now having been up since 7am waiting to hear from the Adult Social Care services who are going to fit a temporary keysafe for the carers to use.
I have the spare key, and the arrangement was that I’d get a call around 7.45 and I’ll take the key down to Nick’s to use with the temp keysafe until the other one can be fixed. It’s getting on for 9.30 now – he needs his meds, I’m beginning to fret, better just get down there to him I guess. Except the contact number the repair team will use is my landline…maybe they have already done the job, fixed it, and no-one had told me?
Oh. My husband has just stumbled downstairs blearily holding his mobile. I’ve been waiting by the phone for two hours, carrying landline and mobile to the kitchen and bathroom with me just in case, and for some reason they’ve called him.

If I could just wave a magic wand to make life easier for carers and the people they care for, it would be for clearer communication procedures. So, so often I am waiting by the phone, ringing up, waiting on hold (I know I go on about this a lot but it is such a big part of the problem), chasing chasing chasing, only to find that the issue has been passed to another department who have not got my contact details and are trying to get hold of Nick on the landline that he will tell me later was ringing but that he will never answer. There have been several occasions when the case has been closed because Nick has not replied to messages and no-one has got in touch with me. And then we have to start all over again. Or, the issue has actually been dealt with but again, no-one has told me. It happens all the time and makes me feel utterly powerless. And scared for Nick, because if someone comes into the flat, say to measure the bathroom door, he doesn’t really understand who they are or what they are doing but he lets them get on with it anyway.

And there’s more.
I got to Nick’s to meet the ASC team with the new keysafe, only to find the old one open on the wall, and Nick’s regular carers in the flat feeding him his porridge. It must have taken some strength, but they had managed to get it working. Then the ASC social workers arrived, had a look and said they would fit the temporary one anyway, just in case. Carers left, and the two women were outside, I had the kettle on to make Nick a coffee while crawling around on the floor looking for his lost hearing aid, when there was loud knocking at the front door. At first I thought it was the social workers coming to say they’d finished, but no, it was Vic. Bright red face to match his t shirt, towering over me in the doorway, calling me a C***.

What did you call me?
You heard, you f***ing stupid C***
What’s the problem, Vic?  
I've had enough of this f***ng muppet and his noise. 
(But there was no noise in the flat. I took Nick's radio away six weeks ago and the TV wasn't on. The only sound was the kettle boiling. And Vic shouting.)
What noise, Vic? 
He moves closer, right into my space. 
F*** off! I’m not F**ing talkjng to you, you f***ing muppet C***

And so on. There wasn’t any reasoning with him and the sheer force of his rage was scary. He kept swearing, jabbing his fingers an inch from my eyes. 
Look Vic, I said, we’ll talk when you’ve calmed down
I don’t want to talk to you or your f***ing family, I’ve had enough of your f***ing family and that F***ing muppet in there, he’s making me mentally ill, I’m having him…”

…at which point I tried to close the door, but he was stronger and pushed it open. That’s when I got really scared. He was so close, I could feel his breath on my face and smell his sweat, and he is a big man, a big and very angry man. His rage was something you could almost see, pulsating like an electrical current. I genuinely thought he was going to hit me.
I could feel what his fist would be like when it smashed into my face, and was steeling myself in the doorway, trying to stand my ground, with Nick helpless in his chair just a few feet away. If he was going to have Nick, he would have to get to me first.
I told him I was going to call the police and he swore some more but gradually backed off and went back upstairs. Then I locked the door and phoned 101. The social workers had been outside, trying in vain to attach the temporary keysafe to the railings, I don’t know why they couldn’t do it but they couldn’t, and they had heard the shouting. Talking to them I realised I was shaking and just started to cry out of sheer shock. They will log it at once but where does that information go? Nothing has changed since the smashed door in August, and this is just getting out of hand.

So now I’m waiting for a call back from the police. Nick is oblivious. I explained to him what was happening – the key safe, why the two women were there, Vic having a go (I don’t want to scare him but he needed to know why I was upset and calling the police) but all he was really bothered about was whether he has any Mars Bars left in the cupboard and if not could I get him some more. And some tinned fruit.

It’s still only just past midday.