Having carers

When I first realised I needed carers, I did my go to, I googled having carers and asked twitter for advice. But there wasn’t much. There was a lot about being a carer but not much about receiving care. So here are my thoughts for anyone undergoing that journey. I’ve had care for about two months so I am by no means an expert but these are the things I wish I had known earlier this year.

Don’t wait till things are really bad.
I did this, i waited until I couldn’t consistently feed myself, I was way past being able to cook. I had been struggling to wash and dress for a long time. This meant that when I did get carers, I went straight from no care to intimate care. From never having anyone dress me as an adult to having someone running a sponge round my crotch. It was, and still is, intense.

Talk to adult social care at your council.
They will assess you, see if equipment or advice can help and if you need it, look at care for you.  when you contact them initially, it’s helpful to have a good idea about the issues and what you need support with. Consider personal hygiene, dressing, eating and drinking, cooking, help with medication, socialising, moving around, household chores etc. The more detailed you can be, the better you’re able to get across the situation. You will probably have adapted ways of doing things and changed your expectations so think carefully. If you are only eating ready meals because you can’t cut up veg then they need to know this. It might be you’re happy with your ready meals but equally, it might be that you’ve got used to them because they’re your only option right now. Think about how long it takes you to do things. Yes you can get dressed but it takes you an hour and causes pain. That isn’t how you should be spending your time and energy. All of this will be used to assess what support you need and if you need carers, how much time you will get.

Care agency vs PAs?
I have only got experience of agency care so I can’t really comment.  I would point out though that if you go down the PA route you will be their employer so are responsible for things like tax, sick pay and holidays.  There are charities out there who can support with this adn there’s a lot of information online about employing a PA.  If you go down the care agency route, it might be worth asking if you can save up any hours that are not set in stone.  For example I have two hours a day plus three extra hours a week and I can save these up so when I move house etc I can use a lot at once.

There will be a wait.
I don’t imagine, unless you are in extreme need, you will ever not have to wait. They need to sort out who you’ll be using, how much time you need, carry out a financial assessment to decide if you need to pay or not. Don’t quote me on it but I think generally if you have over £23,000 you need to pay. This includes any recent spending which they judge as you trying to get rid of savings eg a big holiday, flashy diamond that kind of thing. In my case I think the time between calling the council and starting care was almost three months.

Questions to ask
Will you get the same people? What happens if they don’t turn up? Will I have set times? Will I get a copy of the rota? What if I want to move a time?

First day
On my first day, we started with coffee. I let them know I’d never had care before so they knew my starting point. You will have to explain every little thing which is exhausting. I wish I had taken my first week of care off work. You can’t just ask for a coffee, you have to say how to fill the kettle, how to turn it on, where the coffee, mugs and spoons are, how much coffee you take, that you want some cold water in it and once it’s made that you want it on the table. If you’ve never had help getting dressed, you’re suddenly faced with all kinds of considerations; what do you do first, how do you want them to take off your tshirt – arm, head, arm or head then both arms or both arms then head. There is so much to think about when you start. And all of that is at the same time as having strangers in your home.

What if no one turns up?
Some of this depends on what arrangements you have. But chase them. Generally I would say start chasing after 15 minutes. For me, this means calling a deputy manager and if she’s not there, I have her managers number. These are in my mobile which is always by my bed so if I can’t get out of bed I can still call. Despite saying this, i have just had a morning where no one turned up and my head wasn’t in the right place to chase them. I was lucky because I was having an OKish day and could get out of bed. I also had a friend coming who helped me with everything. But this might not have been the case. So the lesson I have learnt is have a friend who is willing to chase the carers if you can’t.

What if my carer is bad or I don’t get on with them?

If you are with an agency, talk to a manager.  You should also have regular reviews which are a chance to bring up anything which isn’t working well.  In my case I had one carer who was so unsuitable for me that i followed it up immediately.  I had another carer who wasn’t quite so bad but wasn’t great.  I kept notes about what wasn’t working and examples to share with a manager.  From my own perspective as a manager, its always easier to improve performance or make appropriate changes when you have something tangible to discuss.

Final words
Consider what’s important to you in a carer. For me, age doesn’t matter, gender does (I’m being given intimate care so the equality act doesn’t apply) but most important to me is being treated with respect and like the intelligent, independent person I am.  Getting care is a big deal, there’s lots to consider but get it right and it will have a positive impact on your life.

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