AIBU? Carers cutting corners during visits

[FatherDickByrne]

Hi everyone, first-time poster, long-time lurker - please be kind!

My husband & I care for my DM who lives with us. She has dementia so it’s tough for everyone as she has episodes of delirium where she talks non-stop for 36 hours. She has double-handed care (2 carers) with 4 visits a day, organised via the council but part-paid-for by her as she’s over the threshold.

We like the carers and respect what a hard job they have especially when my DM is delirious. We also understand that they aren’t paid well and are under time pressure. However, we use their visits as an opportunity to switch off/take a break from what is otherwise a pretty relentless juggling act of trying to fit work, cooking, shopping and housework around caring duties. We sometimes take a day or evening off and one of the carers sits with Mum (she can’t be left alone). We pay her more than her usual hourly rate for this and she is always really happy to do it.

Anyway, to my AIBU... it seems the carers are always looking for ways to cut corners, shorten their visits (which are anything from 30-45 mins long) etc. They also pray during visits (they are Muslim) and occasionally this gets to us as they take it in turns to shut themselves in Mum’s bedroom to do it. We understand that there are strict protocols within the Muslim religion but wonder why the carers think it’s OK to pray while they’re working. I think this would matter less if they didn’t also try and cut corners/leave early but it just seems off somehow.

Has anyone else had experience of this? We have never said anything but are wondering about asking for a meeting with the care coordinator and bringing it up as an issue. Or is that mean, given that the carers are under as much if not more pressure than us? TBH, it’s hard to separate this issue from all the other issues we have with the situation - the mobiles going off every 5 minutes even though we’ve asked the carers to put them on silent, the lateness, the trying to leave early, the not properly monitoring Mum when she’s drinking a hot cup of tea and the many other niggles that come up on a daily basis. I feel like I can never get a break as I’m constantly reminding the carers about something or other. It’s exhausting 🙁 AIBU and WWYD?

Contact the agency care co-ordinator in writing and copy in the social worker. You then have a record of what was said, when.

If things don't improve, then change care agencies. Unfortunately, social care budgets are under strain and the pressure is to buy in the cheapest care. You have more control if you choose the agency, which you can do if your DM receives Direct Payments. (The Local Authority can appoint someone to manage the finances so the additional workload doesn’t fall on you).

Check whether DM's care plan is clear and up-to-date. If not, request a review with social care and the care agency. DGM's care plan was so long and badly written that it was impossible to follow and it actually contradicted itself.

Things that help:
Being in close contact with the carers, which it sounds like you are.
Learning the carers' names.
Having a book to write messages in so any changes are recorded and different carers can keep up to date.
Having a laminated list of tasks for each visit, with notes, e.g. for DGM as well as saying make coffee, it says how she likes it.
Following up minor issues with the carers and serious issues with the agency promptly. Tell them what they can do to put things right, rather than just complain about what they did wrong.

I am a carer and this upsets me that people behave this way :(

Thanks, Apple23. Those are all brilliant suggestions. Sometimes, it’s hard to see the wood for the trees. Like Groundhog Day with no time to cope with one’s own needs and no time to relax what with worrying about Mum and whether the carers will remember stuff or be diligent about safety.

Have you considered that it might be time for her to go to a care home? Are there good ones near you? It might be kinder all round

My ex husband has carers 4 times a day, he has had several different care companies which start off ok & the level of care goes downhill rapidly, the carers are from other countries & generally if there was a man & a woman allocated, the man would sit & give orders whilst the woman did all the work. His visits were supposed to be 45 minutes in a morning, 30 minutes lunchtime & teatime & 45 minutes at bedtime, most days he is lucky if he gets a 20 minute visit, plus they don't turn up for his breakfast until after 9.30am but arrive for lunch at 11.00am, tea at 3.00pm & come to put him to bed at 5.30pm. Bearing in mind they have to give him his medication & sign the care sheets that it has been given, his medication should be given every 6 hours, several times carers have given him his bedtime tablets in the morning which then means he is asleep all day & awake all night in pain.

My dad changed care companies three times , KCC where I live always choose the cheapest with the poorest care .

@FatherDickByrne

Check out a FB page called dementia family connections.

It's a private page for people who have caring duties/relatives with dementia/Alzheimer's.

They're amazing with advice and support.

Fwiw I second @Nanny0gg - would even some respite help?

@Nat6999 please get your ex to report these carers.

The medication thing is totally and utterly wrong. We had a set who left the tablets with a neighbour to give to our mum!!!!!

When we found this out we made a complaint. We never heard what happened as that's around the time we moved our mum into round the clock care, and it was the best thing we've ever done. She has company and is well looked after.
I know it's not for everyone and I'd have been one of the people four or five years ago who would have said I never could have done this, but it was the best move ever for mum.

You should contact social services if they are funding or part funding, ask for a review of the package of care.
Ask for the agency care co-ordinator to attend also.
Agency staff either have sing in / communication sheets to fill on each visit to record this be such as it arrival / depsrture times, tasks completed and any actions / concerns. Is: called GP etc some agency's have changed to logging all the above information via electronic system
Records of this can be sought from the agency by you or the S/ S rather than having a book in the home to get information.
Please remember as a Carer you can ask for a carer assessment also. You also have the option to employ your own carers via a Direct payment and as a Carer could get a Carers DP ie: Example £10 pw to use towards social / leisure activities to enable you some respite from caring role. ( This is provided via S.S)
Dont know what area your in but Google for more Information in your area. Good luck

Sorry did not see apple23 reply. Hope it goes well.

I have been a community carer for 20+ years and their behaviour is shocking and unacceptable. They should not have their phones on them will they are carrying out your DM's care .Texting totally unacceptable. Leaving your DM with no frame or hot cup of tea this is safeguarding as there is the potential for a serious fall or a serious burn .
Me i wouldn't be giving them a second chance i know it really hard to get cares but please don't accept this downright shocking care what they are doing could well up with a serious accident happening

One thing that boils my blood too is talking over a person they may have dementia but you can still include them .
Speak to care co coordinator ask for better carers say you will pass on your concerns to Cqc they highly likely doing it elsewhere potentially to someone who can't say .
If things don't improve please look for a different, better agency .You and your DM deserve better a lot better .

Thanks everyone and especially to those who have shared stories of care. To those who have suggested a care home, I know it works well for many but it’s not for us - not while my Mum has some good days and is so happy and settled with us and her beloved cat.

We can do it because we work from home most of the time so one of us is always here. Yes, it’s hard but it’s also rewarding and lovely to be able to give back something to my DM who cared for her DGM and DH for many, many years - not to mention me and my DSis growing up.

My DSis helps out when she can so we do get some respite - although she has a full-time job (rather than being self-employed) so it’s more tricky for her.