Having carers, the longer post

I’ve already talked a bit about care on here before:

However, I’ve been asked a few times recently about getting carers by people who are at the point of just thinking about it.  And when I was at that point I had lots of questions and no idea where to start.  So this post is hopefully going to help with that.  If you have questions I haven’t answered, please comment or get in touch with me on twitter, @theowlgirl.

There is a BSL and subtitled video about getting care and support on youtube.

Where do I start?

First step is being assessed by your local social care team (at the council). They look at your situation, your needs, what you need help with etc. They will then decide whats going to help. It might be equipment, it might be care, for me it was both. Being assessed doesn’t force you to have care. If you do go down that route, they will do a financial assessment which is very thorough and then decide if you need to contribute towards the cost.

The needs assessment

When you contact the council initially, it’s helpful to have a good idea about the issues and what you need support with.  At least in York, they ask you lots of questions then and there on the phone.  Thankfully I had some inside knowledge and knew this otherwise I’d have been thrown and would have forgotten most of the things I need help with!

I’d strongly suggest making some notes before you make the call.  Consider personal hygiene, dressing, eating and drinking, cooking, help with medication, socialising, moving around, household chores, relationships with family and friends, your ability to take part in the community 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.

There is an excellent breakdown of the different areas the council will look at with helpful prompts available from Rethink (PDF, page 8).

You will probably also need details of your GP.

Following the phone call which lasted about half an hour, I had a meeting with my social worker to further discuss my needs and my condition and what support would be available.  My social worker was also an OT so she also did an assessment at my flat to see what equipment could help.  She was quite flexible and we had some meetings on my lunch break (I worked at the council so we were in the same building) and some straight after work where we both got a taxi back to mine so she could do things which required us being in the flat.

If someone is currently providing care for you, such as a partner or child, they are entitled to a carers assessment which can be carried out at the same time.  This ensures that their needs are met as well.

The cost

The financial assessment looks at what income and savings you have, what benefits you get, what your rent is, how much you spent on electricity, gas and water as well as insurance and “disability related costs”. For me that includes the wheelchairs I had to buy, transport to hospital appointments, extra cost of food related to my disability (I have food intolerances), replacing clothing because recovering from anorexia means my old clothes don’t fit me etc. As part of that they should look at what benefits you’re eligible for but not currently claiming and help you claim them.

How much you pay will depend on your financial circumstances.  My care currently costs £350 a week.  My pension is £19,000 a year so it’s been worked out that I need to pay £131 a week for care (regardless of how much care I need, so if my hours increase, I still pay the same. If my care hours fall below £131 then I’d pay less). There was a while where my estimated pension was £12000 a year and at that income, I’d have paid about a fiver a week.  Essentially, for me, whatever my income is, I’ll have a “take home” amount of just less than £12,000.

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 a bit intense to start with!  That said, it’s now fairly normal to have someone in the shower with me and we just get on with it.

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 etc.  In my case I think the time between calling the council and starting care was almost three months.

What about my independence?

I found having carers made me feel more independent in some ways. And it gave me energy back to so the things I wanted to do rather than had to. So before care, I used all my energy on dressing, washing, eating etc and had no energy and was in too much pain to do anything enjoyable.

You are also in charge of what the carer does and doesn’t do and when they do things.

I’ve done some awesome things with my carers that I wouldn’t have been able to do without them – we’ve been to the seaside, we’ve had trips to local attractions, we’ve been out for coffee, to the park and (less awesome) they took me to the other side of the country to visit my sister when she was in ICU.

What about all the horror stories you hear?

Unfortunately, it’s not always smooth sailing.  I think this is probably always going to be the case.  Some carers are better than others, some agencies are better than others, some people won’t click with you etc.  Keep with it, give people a chance but also know that this is a service you’re receiving and if it isn’t up to scratch, you have rights.

If you’re really worried, then the Care Quality Commission are the people to talk to – they’re like Ofsted for care organisations.  If you’re using an agency, talk to a manager about your concerns.

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 and there’s a lot of information online about employing a PA.  Given the nature of my care hours, I was advised that finding PAs would be tricky; I get an hour in the morning (8.30-9.30ish) and an hour in the evening (4.30-5.30ish) plus six hours a week which are ad hoc as they’re used to go to appointments etc so can be needed at any point.

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 six extra hours a week and I can save these up so I can go on day trips etc.

Other questions to ask if you’re using an agency include: 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 of care, we started with coffee. I let them know I’d never had care before so they knew my starting point.  Ideally I would have preferred to meet my carers in advance but that wasn’t an option.  I’d say it’s worth asking though.

Having someone turn up at my door at 7.15 one morning and say hi, I’m your carer is a bit weird… Although she turned out to be my lovely carer.

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 had mornings 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.  And know who you can call on to come and help if your carers do let you down.

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.  It also allows family members to focus more on being your husband, your child, your wife etc than providing your care.

Please please do ask me questions.  I’ve tried to cover what I thought I wanted to know but am happy to answer whatever else I can.

1st August 2016, edited to add: 

I also have a care agreement that I wrote. There are obviously lots of policies that the council and the agency will have but I wanted to put something together that was personal about my expectations. Thes are things which are very specific to me.  Whilst you’d expect them to be met, they serve as a reminder. It also means if things aren’t working well, you can refer back to the agreement,”I’ve noticed you’ve been coming in a bit early a few times recently, punctuality is important to me but as per my care agreement, I would like prior notice if you’re going to be early so I can let you know if it causes a problem” 

I have a folder in my house where my carers write notes etc so I stuck it to the front of that.

How To Be A Carer Part 2

Firstly, if you missed How To Be A Carer Part 1, or have forgotten the key teachings, you are advised to read that before proceeding.  Today’s lesson is focussing on communication; from the voice you use to the topics you talk about.

The voice you use

Baby talk to clients. No explanation needed here, it’s obvious right?!

Overshare

The client doesn’t really have much of a life so you need to share the intimate details of yours, for example if your cousin’s neighbour’s dog has eloped, that is prime material. Your client would never forgive you if you didn’t share the juicy details!

Note: oversharing can extend to financial matters including the details of various relatives bank accounts. It’s not showing off, just teaching the client about life.

Moan 

Moan all the time, particular loudly about the parts of the job you don’t like going for this client, they will stop asking you.  Even better, moan about another client asking you to do a particularly awful task and really emphasise how dreadful l it was and how awful it was that the client asked you to do it. You see, this way, the client will know never to consider asking you to do it for them.

When it comes to moaning, don’t feel you need to hold back there are no topics which are off limit. Managers pissing you off, rotas not going in your favour, other clients etc are all acceptable things to moan to this client about. After all, if they weren’t there you wouldn’t have to be either.  It’s really all their fault when it comes down to it.

How to avoid difficult or unpleasant tasks

In addition to moaning about tasks, for this client or any others, you’ve also got the ‘nervous breakdown’ and ‘I can’t do anything’ options to get you out of those tasks you just can’t be bothered with.

A couple of months in (not too early or it will be put down to nerves), in an outburst of emotion, declare to the client that they can’t understand what it’s like to be a carer, how scared you are of them and how hard it is for you. This display of unstable emotion will be enough to put them off any thoughts of criticising you and you can allude to it with a quavering lip or teary eye if they ask too much from you.  They won’t want to push you, they may even see you are suffering and get you to put your feet up with a cup of tea.

In the very early hours of your client carer relationship, tell them repeatedly that you’re really crap at cooking, washing hair, cleaning etc then they’ll be so concerned with crap results, they won’t ask you to do it.

Don’t forget about yourself

Make sure when it comes to conversation, it’s all about you – how hard this is on you, how wonderful your family are, doesn’t matter what the subject is, it’s your job to get it back to being about you.  It’s important to get things off your chest and let’s face it, it’s cheaper than counselling! It’s particularly pertinent that you do this with clients who have difficult lives.  All they have to think about is themselves until you provide some relief in the form of your own (so much better) life.

Finally..

It’s absolutely fine to pull faces behind the clients back, you’ve got to get the stress off your chest somehow!  Other non verbal communication such as arms crossed and scowling is also allowed.  After all, some of your clients might struggle with verbal communication – it’s all about equal opportunities.

How to be a carer

If you follow me on twitter or know me in real life, you have probably heard me whine about my carers.  Don’t get me wrong, I have some great ones. But I also have some awful ones.  The following are from real life and unfortunately mostly one carer who, despite me repeatedly trying to get her removed, is still on my team.

How to be a carer

Golden rule: Assume the client is stupid. They need care and you provide care, therefore you are better than them.

“Can I have some coffee in my flask?” Just add coffee powder and put the lid on the flask.  Job done. That’s all that was asked for.

When the client gives detailed instructions about how to heat up a wheat pack, follow them, but don’t remove from microwave, instructions didn’t include that.  When the client asks where the wheat pack is, act surprised, she didn’t ask for it to be removed and given to her.

Client: “Can you get me out a new toilet roll?”
Carer: “Yes, would you like it in the kitchen?”

Splash water on the client when supporting them to clean their teeth – they struggle to get washed so every little helps.

Mash oven chips – it makes them easier to eat.  So what if the client didn’t ask for it, you’re using your initiative.

Don’t follow instructions despite parroting them back to the client. Your way is the right way.

Let yourself in 45 mins early, wake up client, then fire questions at them and don’t give them chance to wake up.  With any luck they’ll be so disorientated that they’ll tell you to leave early.

Practically run out the door after the care call, even better, leave half way through.  Your time is precious after all.

Despite frequent requests, do not core apples and pears, the client will enjoy them regardless.

Include grapes covered in a white fluffy mould in their pack up, no point in wasting anything!

When you go shopping, leave the client in a corner in their wheelchair, run round the shop and then declare there is nothing in the shop for them. You know best.

Tell the client how grateful you are that you’re healthy. This will help them feel better about themselves, after all, they are making you feel grateful.

Talk about other clients, you’re just trying to make everyone feel connected and less isolated. Confidentiality is overrated.

Stay around after the client has said you can go, they are obviously lonely and need your company.

If you need to write down the client’s rota, just doing half of it is fine, they don’t need to know it all.

When it comes to meds – repeat back what the client says, then do something different. She’s taking so many that it doesn’t really matter.

Nb. This isn’t a comprehensive guide, you will need to use your intuition but never forget the golden rule: Assume the client is stupid. They need care and you provide care, therefore you are better than them.

“Why don’t you apply for this care job…?”

Before me and my sister started having care, I didn’t really know how awful the care sector is.  Yes I’d heard some of the horror stories but I guess I’d always assumed that they were the exception.

(I’d like to add that from talking to other people, my care company, on the whole, seems generally to be one of the better ones…)

I think for me there are a few issues:

  •     quality of staff
  •     availability of staff
  •     quality of care companies
  •     late or missed care calls
  •     too many different carers going into people’s homes
  •     perception of the role

For now, to start with, I’ll be looking at the perception of the role of carers.

Caring (eg personal carers, childcare, medical care) is one of few jobs where not doing it well will have a massive impact on someone, quite possibly risking their health and wellbeing.  Few jobs have this level of responsibility.  And most jobs within a caring field are not well paid and that responsibility is not recognised.

Anyone who follows me on Twitter or has heard me talk about my carers will know CC – crap carer. I joke about her incompetencies (that’s a blog post all of its own – coming soon!) but the reality is that when she appears on my rota I am filled with dread. Half the time I am cancelling her because dealing with her is more damaging to my mental health than the benefit of her limited support.

This means that some evenings (I can’t cancel her in the morning because I can’t open my meds or get dressed), I am sleeping in my clothes and either getting friends to help with food and drink or struggling with them myself.

Given my health, I really struggle to get the lid on and off my drinks bottle so have had days where I’ve been eeking out my juice so i last until my next call.  Food wise, all I can manage on my own is finger food. Essentially I’m limited to sausage rolls or…no, I’ve been thinking, between being unable to open things or cut them up, I can’t think of much else I can manage.

That said, when she is with me, I don’t eat much better. She can’t cook, and she can’t follow instructions. She ruined oven chips for gods sake. So I have to prepare the call before so all she has to do is microwave leftovers. I can’t even do things like oven chips or veggie sausages, partly because she is that awful but even if she does manage to cook, she doesn’t understand that I need things cutting up small. Every time I have to remind her to cut up my food, which is a humiliating, and every time she makes a half arsed attempt and I have to get her to do it again because a sausage cut in half is no use to me – I can’t cut it and they don’t balance well on my spoon. I have carefully explained why we cut up my food but it doesn’t seem to help…

Oops, I said this wasn’t going to be about CCs incompetence…  My point is that there is a huge impact on me, my health and wellbeing and my friends if one of my carers can’t do their job.

In the current climate it feels like more and more people are being pushed into caring. Think ‘Wanted: a very personal assistant ‘ which was on BBC3 a few weeks ago. In summary, it took unemployed young people and, without them knowing what the role was, they were interviewed and offered jobs supporting a young person with care needs.  The idea seems to be that people don’t even need to be making an informed decision about becoming a carer.  I know, from talking to people who are job hunting, that there is a push from the job centre to work as a carer or PA. Because there are no qualifications required (generally), it’s got a reputation as a job that anyone can do. This is not true!

1. Firstly, it’s really obvious to the client if you don’t want to be in the job, aren’t enjoying the job or even if you’re a good carer having a bad day. It’s such a personal, intimate relationship that you can’t miss it. BTW, bad days are fine, we all have them. If you don’t want to be here, that makes me feel awful. I am also far less likely to ask you to do things for me. If you are making me feel like an inconvenience, I will want you out of my house ASAP.

2. Secondly, it’s a full on job. I couldn’t spend that much time with another person/people having to support them with so much. And the carer has to be professional. Yes my carers have a bit of a whinge and moan about things with me but they also have to come with a smile and degree of cheerfulness even after a long shift- at the very least, don’t skulk in, avoid eye contact and run out (yes, CC, I’m looking at you).

3. Thirdly, it is PERSONAL care. I need a carer to sponge wash me, all of me. I can’t wash myself so I can’t have a carer who is squeamish about cleaning intimate parts of me (I don’t like euphamisms but not sure wordpress or google will like more specifics). The fact of it is, that I, just like everyone else need to be clean. And I know that there are many many people out there with more care needs than me. You cannot come into this job thinking you’re going to have a lovely time and how great it is to be helping people. That will be part of it, but you can’t avoid the other part. And I’m not sure, based on my newest carer, how much people are informed or prepared for that.

The above are not the only issues but for me they are three key reasons why a job in care isn’t for everyone.  Other things include the physical nature of the role, variable and often antisocial hours etc.

In summary…

Not everyone can be a carer. There may not be qualifications but there’s definitely some people who can do it and some who can’t.  More recognition and value needs to be placed on the role so we move away from this perception.

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.