Stressed and upset about care great aunt is receiving

[Hedgehogcrossing]

My great aunt, my late grandmothers sister, has Alzheimer's. Obviously she is confused and vulnerable. Our parents and grandparents are dead so her care has fallen to myself and brother.

I've basically been told on aibu that I am being unreasonable because carers don't get paid much but the carers are smoking which puts Ga off her food and she's barely eating a thing. We've booked times of 12:30 and 5 for lunch and tea but carers come as early as 11 for lunch and 3 for tea! As she's incontinent she's also left sitting in a wet pad and a dirty one too at times. It breaks my heart. I've been told to pay more and increase the time but I am already paying around £70 a day for her care and I just can't afford it.

I recognise carers have awful working conditions but surely this doesn't mean a vulnerable old lady should have to put up with them coming whenever they feel like it, smelling strongly of smoke, and generally not giving her the care she needs?

I am very worried about this. My parents died in my teens and my late grandmother and great aunt were so kind and supportive, I feel like I'm letting them all down.

Ah I am sorry you're going through this. I can't offer any advice other than to say its not that they're coming when they feel like it, its because everyone wants lunch and 12 and tea at 5, if the carer has 10 clients to see, it simply can't be done.

But that is what is on the rota they send us pootles. If they can't manage 1230 why agree to it in the first place? Im afraid they are coming when they feel like it - sometimes at 11, then the next day at 2. Then she has a tea call at 3. It's crazy!

I can think of many poorly paid jobs but none of them would allow people turning up whenever.

Would she qualify for PIP so that you could afford to pay for longer ? tbh it doesn't sound as if ad hoc care in her own home is really appropriate. Are SS involved ? The carers shouldn't smoke when visiting or preparing food but I can appreciate the smell lingers even if they have one some time before.

Your poor auntie. I'm afraid that's how our society looks after its old people these days though.

Other posters are correct - our current care system is so overloaded and under funded, the care most people get is mediocre and second rate. It's not fair, but without hiking up the taxes we all pay (and no government is prepared to risk losing an election by doing that), I don't see what the solution is.

Does your aunt have any money put aside that she can use to pay for care privately? If only for a few days a week. This could either be as well as, or instead of state care.

Do you work? Even if you do, could you look into registering as your aunt's carer? Carer's can get an allowance/benefit which may be enough to warrant you taking on the care yourself.

Have you looked into getting her into a home? Many homes are bloody awful, and she may not necessarily be better off than she is in her own home, but some are wonderful. Depending on her financial circumstances, she can get funding for this.

It sucks, but she's lucky she has you to look out for her. Don't give up fighting for the right care for her - sadly, it often seems to be the case that he who shouts loudest gets the most.

Oh dear, the rota does sound like it needs looking at. It may well be the agency rather than the carers. Having been a carer, I know the agencies can be really shit - but then so can some of the carers

Its awful that people are cared for this way - we wouldn't let this happen to children, so why is it happening to elderly?

At the moment this is paid for privately by me - I do work full time as does my brother. I'm on holiday this week or I would have not known about the ad hoc timings. We've advertised for private care but no joy yet, as she needs two people really.

She would be terrified and frightened in a home, that's an absolute last resort, absolute last stop. At home she still has moments of clarity.

I spoke to the agency when I last was aware of carers coming at completely random times and they assured me it had been dealt with - it hasn't. I was with GA on Thursday (yesterday) and I actually saw two carers pull up light a cig and then come in to give GA lunch, this was at 1:45. Then I was still there at 3:15 when another two pulled up. So GA was left from 8 till nearly 2 with no hot drink, no change of underwear or pad. Then had her 'tea' at just gone 3!

It makes me upset. As people say we wouldn't have it for children!

I don't know what to say - and I dread being in a similar situation one day myself. I suppose you just have to keep an eye on things, keep nagging the agency for the service you're paying for, and keep looking for a better option.
I'm really sorry for you and your auntie that no-one so far has been able to offer you a solution.

Are you sure you are claiming all the relevant benefits as some of those could help with funding personal care and any adaptations she may need.

We aren't entitled to any sort of benefits as our/her income are too high. We could sell her house and put her in a home but as I've said we definitely don't want to do this.

Are you sure ? PIP, for example, isn't income related. Age UK would advise you. Could she go to a day centre a few times a week ?

Are you living with your Great Aunt ? Does she get Attendance Allowance ? This is not means tested and just goes on level of support she needs. Once in receipt of this and with a diagnosis of Dememtia, she is eligible for Council Tax exemption.

Sorry, I know this is intrusive. Why are you paying for her care and I'm assuming she has assets over 23.5k separate to her house ? Apologies for this, just so we can get the picture.

Actually it might be Attendance allowance given her age www.carersuk.org/help-and-advice/financial-support/help-with-benefits/attendance-allowance

Do you not have a choice of caring agencies? My Dad has dementia (mixed) and we have carers who come in once a day to do his lunch and check a few other things (Dad's early stage and copes quite well with a little help). We pay (privately) just under £17 an hour for weekday visits and around £25 an hour at weekends. The agency send a weekly rota each week stating which carer will be there on each day, and the time they will arrive. We've had no issues with smoking (though Dad smokes himself, so wouldn't object if his carers did).

I found our agency online (Bluebird Care, Hove) - I contacted a few before choosing them, and they have been great so far - could you look into using a different agency? Dad does receive AA at the higher rate, which helps to pay for his care (and he is council tax exempt, too), so his costs are more or less covered by this.

It's worth shopping around for carers, I found - not all agencies are the same.

I understand what you're describing. I have described stories of the dementia care I see to friends who say "oh well...." then I ask if they'd say that if it was a child receiving that treatment, e.g. "they said they weren't hungry/thirsty so I accepted that " or the uncaring, rushed, abrupt communication that passes as "caring". If a toddler at nursery said they weren't hungry, well you'd ask in a certain way or leave something out in case they decide to eat after all, or you may think to yourself "they lack the self-insight to realise they are hungry, they will realise after seeing some tempting food." And explained like this friends hopefully get it- if the older person with dementia was capable of making these decisions "no food for me today!" they wouldn't need care, and they do need it otherwise we wouldn't arrange it. I'm in Scotland so things may be a little different, but if the carers are arranged through the council I would look to going private if you can secure an "old-fashioned home help" (that's how they describe themselves here) or use a care agency that is party of a local charitable organisation. You have my understanding. Please keep off aibu with this stuff though, I hid the topic ages ago and it sounds like it's just as contrary and argumentative.

Thank you so much for that!

The problem is that the care agencies can't cover all of Ga's needs: we hoped paying privately would give a good standard of care but it seems very ad hoc. Honestly some carers are great but others not so much. It's the ones who treat her call like it's a race that make me

They should not be smoking on the job. But I've known people who have carers and sometimes they do arrive a bit too early for lunch or tea. And I think it is quite a problem that it's usually down to the individual carers. Some are just a lot nicer, kinder and more responsible than others. Good idea about the day centre.

My mil has dementia and she pays for a private care company to come to look after her, she has one named carer who comes at the same time each day - if you are paying for care, this should happen!! They certainly shouldn't be smoking in your Gran's house.

I'd make an appt to take to the manager of this care agency and get them to pull their socks up or warn them you will report them to whoever is in charge of care homes and agencies, and also take your business elsewhere. Have you asked for the same carer all the time? And why can't they visit at the same time every day. Or are they taking the piss because your gran isn't in a position to tell you what's happening?

Also agree that your gran will qualify for attendance allowance but the form is a bitch to fill in - ask age uk to help you with it. Good luck.

It is probably worth trying a couple of other agencies. One Poster on the elderly parent support thread tried several before finding ones who worked well.

Hedgehog, all this is really difficult.

Basically the latter. They can't guarantee the same carers - they try but obviously this isn't a given and we understand this. She has the same (good) carers morning and night, it's the day calls that are the issue.

She would be very confused and scared at a day centre and I'm not sure that would be suitable to be honest.

OP, in the very kindest possible way, dementia is degenerative and there will come a point when home care visits simply won't be enough. It could be years, it could be weeks but it is inevitable. Why not take the time now, whilst ga is still quite lucid to get the residential ball rolling so you have a good robust plan of care in place for when this happens?
I've worked in dementia care and, without trying to scaremonger. I've seen relatively sound patients with dementia succumb to a UTI and go downhill very rapidly necessitating care arrangements because their bodies and minds just couldn't bounce back. They've ended up in some places I wouldn't board my dog in - simply because they were too ill to return home and good care homes are few and far between, especially with no time to research options.
Wishing you strength and good luck for the future.

Thank you for your input but she will stay at home :) we are trying to get full time carers for her now.

In the meantime we are limping along with agency carers!

My Brother organised full time carers for my Mother last year and my FIL currently has them in Spain. It was a disaster with my Mother due to her personality but is going very well with FIL. If I can help at all please shout.

One thing I learned along the way though is as MrsSmith says, it is important to have a plan B as Dementia is so unpredictable. You read about family after family in crisis on the Alzheimer's forum as they were determined their relative would stay at home but something happens and it is no longer an option. Although extremely difficult, it is a good idea to look at what is available in her area just in case. Hopefully you will never need it but as someone who has seen 14 homes now and had to act fast in an emergency, I would have been screwed if I hadn't of looked.

I would be muttering at me and Mrs Smith under my breath at this point if I were you and be thinking 'which bit of she is staying at home don't you understand' so I do apologise. Something you may know but I didn't is there are some CH's that have flats attached. Mum started off in one when she had to leave her home.

Add message | Report | Message poster Hedgehogcrossing Fri 31-Oct-14 18:12:58

'In the meantime we are limping along with agency carers!'

I understand how you feel Hedgehogcrossing - it's very stressful having an elderly relative with growing needs and there are no easy solutions. My mother is in her late 80s, is semi incontinent (gets the signal to go but often can't make it to the toilet in time) and lives alone in a house with ongoing maintenance issues. She is frail and lethargic to the point where she won't even get herself a drink, even though she has no serious mobility problems. We have a private carer who visits her 3 times each day during the week, then have agency carers over the weekend. Currently all this is funded from her savings (her pension is tiny) but in a year or so we may have to downsize her to fund her care.

When we signed up with the agency they said that most of the calls would be done by the same two carers, but in reality there is little consistency so Mum has so many different carers she doesn't get to know any of them. Timings vary... morning calls can be anywhere between 7 and 9.30, lunch from 11.30 till 2 and teatime from 3.30 to 5.30, so there can be longish periods when she's waiting for a drink/snack. It's not the fault of the carers though - they are given long computerised timetables with all their calls listed and have to do them in the order specified. However, all the carers I've met have been friendly and seem kind, which is a relief. Mum has no complaints and although the agency rates are horribly high in comparison to what they actually pay the carers (which does bother me but that's another subject) I have the peace of mind that comes from having cover in place each weekend, albeit just brief calls.

Mum has early signs of dementia but nowhere near as bad as Dad, who went into a care home last year and is reasonably settled there. It's hard to plan ahead for the care of elderly parents, as their health can be reasonable for a while then suddenly nosedive, but if you're not happy with the agency workers then maybe it's worth considering another agency? I considered hiring another private carer for the weekends, but I felt it would be difficult finding the right person, plus I'd still end up needing agency cover for their holidays etc. With agency carers I have more flexibility and the comfort that even if carers are on holiday or sick the agency will cover the calls somehow, because the supervisors step in to cover such things.

On the subject of pay, we pay a decent rate to our private carer and she is worth every penny. The agency carers are probably on much lower rates, which does bother me as I think they deserve decent pay for doing work that is difficult and demanding. The agency charges us MUCH more than we pay our private carer, so somebody is making killing. However, I guess that running a care agency is quite stressful and the staff turnover must be high, so maybe nobody would do it if they couldn't make a decent profit.

I hope that one day the government will regulate the care industry so that carers receive proper training with recognised qualifications and a decent pay scale, but in the meantime I don't feel unreasonable using agency carers - if they are poorly paid it is their employers who are being unreasonable. So, OP, don't let anyone say YABU just because you use agency carers - YANBU to provide support for your GA in the best way you can. It's a tough situation, whatever you do.