First time finding a carer

I have decided to find and employ somebody to help me at home, I have not done this before and I expect there are some banana skins to avoid. Have you got any advice?

For context, I think I can just about afford up to half a day, and want help with things like this

• meal planning, maybe accompany me doing some prep
• do some admin relating to medical appointments and so on, again alongside me, probably not alone
• make sure I've remembered to do some key things like physio 'exercises' and things that are important to me but I forget to do (like watering all of my plants which I love but are all dying which is causing great shame) by either reminding me or doing it with me
• talking through the steps I need to take to complete something stressful, daunting or complex (not as in mental health support - I have that) or to research something I need to plan or prepare and possibly doing it with me
• go to pharmacy or corner shop if needed, or maybe accompany me so that they can take over when I fog out/help me problem solve (or with the pharmacy, witness the awful service and help me remember it in full to write it all down for my future episode of panorama...)
• some household tasks like organising with me, not 'cleaning' (getting a cleaner)

I have been recommended two local agencies by somebody who knows a bit about them, and been told to write a specification, and to think about calling helplines which I will also do.

TIA!

 

It might be helpful to know which country you are in maybe?

Also do you want pointers for *finding* a cararer - whcih is why i aksed where you live.

Or things to be careful of/tips how to sort things once you found one?

 

Good question...I suppose I mean defining what I would like help with, choosing, getting started with and keeping them.

I am in the UK.

 

@Trish said
'What you describe sounds like it would be better described as a personal assistant rather than a carer.'

I heartily agree. My carers are very rushed, in very short supply, and leaving because of low pay, and fuel costs as agency dont cover the fuel they spend so out if pocket, and there are worryingly no new ones in the pipeline. So many care vacancies now.

Because there are so few left I tend to get the same few but one of them is talking of leaving because out of pocket.

 

Also worth thinking about how you employ some one:

1. Through an agency - they organise all the employment stuff and invoice you
2. Through social services - they may provide care in some circumstances, but also if you don’t fit their criteria may also charge you for it (when I looked at this it seemed quite expensive and not what I needed)
3. You are the employer - so tax, NI, employment issues are your responsibility
4. You pay someone directly - and don’t enquire too closely about how they organise their relationship with the tax man
5. You contract a free lancer - they invoice you and organise all the tax etc on a self employed basis

Although the details will differ between countries I assume the general principles are similar. Also there maybe companies that could help you with the pay roll stuff if you wanted to employ someone directly, though obviously any form of agency adds a cost in relation to their fees.

There may be voluntary groups that could help you. Here in Derbyshire there is a group that will help people draft job descriptions etc working with people to decide what they need, help draw up adverts and also try to match people with suitable workers, helping with interviews etc, as well.

 

i have only ever done this, all the other options were completely out of the question for me.

I think the names are interchangeable... always called her my carer, she called herself a support worker, I hate the term PA because its intrinsically associated with a posh secretary to me.

And i find when you tell people 'i need my carer to bring me' or just mentioning that you have a carer, it is a good way of communicating to people that you are ill/disabled enough to need one & they tend to be more willing to make accommodations for you. Eg with hospital appointments 'no sorry i cant do early morning appointment because i need my carer to bring me & she cant get here early enough' makes them a lot more willing to find you an alternative than 'sorry i cant come that early because i am too ill to get up that early'. In addition i see mopping up vomit as a carer's role lol, so i was happy calling her that.

My carer came (am currently trying to find a replacement) set hours with me so it was regular & predictable, but what she did changed depending on how i was on the day. Taking me to appointments, running errands, cooking, household chores, gardening, helping me have a bath, wash hair, bringing me food/drinks when bedbound. So at best she'd push me round the park in the wheelchair for an hour, & at worst she'd bring me everything i need for a bed bath. Also supported me with banking form filling etc. She also at times advocated for me while meeting plumbers/roofers etc and did some decorating.

A self employed person will do whatever they decide they want/feel comfortable with - discussed in advance. And agency worker can only do what agency allows.

Make sure they are DBS checked and have contactable references!

I investigated being an employer & yes there are agencies that will help you with payroll etc, but its only worth it if you are going to be employing someone for a full time position really. But i can tell you that self emlpoyed carers are like gold dust! very thin on the ground. The going rate in my area these days is £18-20hr self employed but some of them do charge less to self funders - ie not through social services/county council.

Your local county council often have a list though of people who are DBS checked, i know mine do.
Also Curam care & Prime Carers are middlemen that system might work for you, they vet the person, sort out all the contracts & invoices & then they take a cut. I havent used them so i dont know what theyre like but here are links. there are some reviews on trust pilot you can read

PrimeCarers | Find Your Perfect Private Carer Today

Curam | UK's Leading Online Source of Private Carers (curamcare.com)

 

Also heres a really big important tip

When people show you who they are... believe them.

Whomever you get, if you get a bad feeling or a niggle about them early on.... LISTEN TO IT.
I didnt and was badly hurt by one person who came, & turned out to be pretty nasty. I had a little glimmer early on but she made me laugh & i needed help. Wish i'd taken my own instinct seriously, so just be aware of your instincts about the person you're letting in to your home.

 

I've been using agency care staff since October 2013 and my advice to you is to avoid agencies like the plague. If you have no alternative (like me) then don't expect 90% of the staff to treat you or your possessions with respect. I've had no end of difficulties including staff refusing to help me undress because they thought my illness wasn't real, I've been accused of lying about symptoms, staff often rush you, I've been told I'm not disabled (I'm 100% bed bound).

Try and find a self employed carer like @JemPD says.

 

I wouldn’t rule out trying agencies for personal care. The regular staff have to be briefed on what your invisible illness entails. There is a lot of information about invisible diseases on the internet that they can familiarise themselves with. This should be a conversation with the agency during the meeting to hire them (providing the information you feel they need to know).

Staff should also be aware that you can push through your symptoms to carry out daily living activities, but doing so worsens your condition and their job is to support you with all the activities that you request so your condition remains stable.

This information can be added to their call-out plan for attending your visits. If you get any pushback (unfortunately, it's likely), inform the agency management to reiterate their job. They'll usually replace the person.

Unfortunately, because there is so much unknown about ME, the widespread misinformation and the confusing nature of the disability to those uninformed, the chances of carers disbelieving in physical impairments are high. The problem needs to be mitigated.

The advantage of having agency staff for personal care is that if an assigned carer becomes absent, there is a replacement. So if the pwME has difficulty making meals, having a wash, getting dressed, etc., there is less chance of those things not being done.

As mentioned already, for other duties, like the tasks @Haveyoutriedyoga is seeking, a PA does seem the better option.

 

I'd say it also depends a lot on how severe you are and whether you have sensory sensitivities to any degree. For example, many/most people use fabric softener on their clothes and wear perfumed products, and most people will simply NOT be able to grasp that when it says in your care plan (assuming they bother/have time to read it) that they need to be quiet they simply cannot grasp that any sound will be pure agony to me, including closing the door, rattling the pots downstairs, coming & speaking in a normal voice etc.

even people who love me it took them yrs to grasp that, so a carer who never met you & doesnt 'believe in' ME/CFS is likely to torture you just behaving in a way which would for anyone else be entirely normal/acceptable.

If they send someone else because your regular person is off sick they are not going to be wearing clothes they laundered without softener/fragrance or wash off their perfume before arriving etc, its just too much to expect for them to remember/take it seriously. But if you have little sensory issues then - For me these types of things will make me symptoms significantly worse & be utter torture if i already in PEM (which i often am because life doesnt afford me the luxury of being always able to stop when i reach my limit).

So for me, its better to lie there without a wash, eating crisps and fruit/nuts that are always kept by the bed, than itis to risk being made worse by carers who dont understand.

 

Also - agencies charge more and pay their people less because they have to pay the costs of running a business & are trying to always make a profit, so often carers are on minimum wage while you pay £25-30 hour

 

You're right. In such cases, I can't see the benefit of having an agency.

Each case has to be individually weighed up according to pros and cons.

We all differ so greatly. I was completely unaware of the sensory sensitivities you describe.

 

really?! i'm surprised, they're pretty common among the severe.

As you say we're all very different.

 

For the most part, I was aware but I didn't know sensitivities included the smell of softener and in that case any lightly scented products.

 

aahh, i see.

yeah anything with scent. Especially artificial scent, so i can often tolerate certain essential oils but a chemical smell affects me badly, something about the quality of it.

I dont consider fabric softener to be 'lightly scented'! I can smell it as soon as they come in the room (especially nowadays with these 'scent boosters' people often use)

The smell makes me start retching as soon as they come in the room if i in PEM, Same with sound, its not 'noise', noise would be calamitous, but even the rustling of a paper bag or a plastic apron is like being physically assaulted, its any sound at all when i'm bad

anyway sorry this is off topic now.

 

This needs to be thoroughly considered.

I'm also in the process of hiring a PA for all the reasons you stated @Haveyoutriedyoga. I decided it was easier for me to use an agency or employ a person using a payroll company because of my cognitive issues. If it's helpful, I can send you an outline of my job spec, including things my support services told me to include for the maximum desired response. I can also send you some interview questions I received.

In terms of choosing, I think you'll be able to narrow it down when you interview and receive positive references.

I'm unsure how you perform the DBS check, but that must be done before you start.

Hiring with a trial period seems like a good idea.

 

These are all really very helpful tips thank you everybody! I'll report back.

 

Someone on Mastodon posted a thread talking about their experience adjusting to having a carer come to their house. I thought it might be helpful for the folks here.

Just FYI, their profile lists their location as "sheffield, south yorkshire, england" in case that helps.

Here's the link:

https://zirk.us/@annedraya/110111918808591487

Folks should be able to read that without having an account or logging in.