AIBU to complain about my mother's council carers not providing proper care?

[TheTwinklyLemur]

AIBU? My mother has Alzheimer's, lives in her own home and has carers from the Council who are supposed to get her up in the morning, get her ready for the day and give her breakfast then come to give her dinner and tea and help her get ready for bed. Her neighbour, who helps her with shopping, has told me that they are not turning up or are leaving after ten minutes when they are supposed to be there for half an hour. She has even had to help her to bed. I know they are busy, but this doesn't seem right. Sometimes her neighbour gives her her meals because the carers haven't turned up and I have done it when the carers haven't turned up[. The neighbour is elderly herself and has her own problems to deal with. Mu Mum pays about £1, 500 per month for this service.

Last week she went to sae the chiropodist for the first time in years, they were shocked and also asked when she last had her hair washed. Now she used Ito have a lovely carer who washed her hair and gave her a shower, but she was stopped from seeing her because she "spent too much time with her". When her care programme wes first arranged, they were supposed to give her longer in the morning so as to help her shower,wash her hair, get dressed, etc. However, this seems to have gone by the by.

The whole reason that I asked for carers was because I didn't feel comfortable doing her personal stuff like showering.. I know there are things that cares can't do, like cutting toenails (thus the problem above), but I was expecting them to wash her and other personal stuff like dressing and undressing. If they are only going to put her meals in the microwave and make a cup of tea I wonder what she is paying form I could do that.

I work in this area. Many council providers are working to impossibly small margins and so corners (decent staff, time in calls, management oversight) will be cut. It’s not on and you/ your mother shouldn’t have to accept it but it’s symptomatic of a system that is underfunded.

I presume your DM gets part funding which is why it’s council arranged but she puts it 1.5k? I would ask for direct payments and commission a well regarded local, small care company that cares about its clients. Your social perscriber at the GP or the local Alzheimer’s society is a good place to look, or reviews on Homecare.co.uk

Personally I wouldn’t use an unregulated private carer.

Just to say if you're getting paid less than minimum wage when you account for all your hours including travel plus emergencies you could report to HMRC who can investigate. They're quite hot on companies not paying minimum wage.

Both parents have had carers. We chose the company and although I don’t live in Uk and DSis lives 2 hours away they knew we were on top of things. The daily tasks were decided during a 90 minute meeting at home. We poked our noses in if we thought things were not done properly. They worked with us to try to get Mums hair washed and her showered. We all agreed that mum was refusing. The care coordinator said “I will feel I have done my job the day we get her showered every week.

Also her regular carer (one was there most of the time but others came on her day off), said that social services checked the files to see that she had a hot meal daily. . I think this was only for council care clients and mum was self funded but I was not complaining.

Mum would also say that she didn’t have anything else for them to do when there were things ( like take washing from the machine after previous carer had put it on) but there is only so much you can do. My sister and I stayed for a week on alternate months so we did really see things up close. A half hour visit was rarely a full half hour because they need to write notes ( of what they did, food given and medicine given). It was more like 20 minutes. Mums regular carer did tend to manage her own diary. If she overran with the lady before she would still make sure she got everything done. When mum was unwell and she was worried about her she has come back between visits to check on her )but told us not to let her bosses know).

Mum is now in residential care which brings different challenges. She was not safe on her own.

So what the OP has described is not acceptable. Cameras need to go in the house/ring doorbell. We put the cameras for Mim because she had hallucinations and was telling us other people were in the room. It was eventually what we saw on the cameras in terms of what mum was doing that made us move her.

I think OP should either flag up with adult social services or the care agency itself. This is a lady who deserves to be looked after.

Kerp updating @TheTwinklyLemur we can keep helping you

The care service is in disarray! You pay a fortune for very little! Sadly staff are paid very little of what the company get and it’s often not their first choice of job! That’s not to say there aren’t some amazing carers out there but like working with children, elderly care is a vocation not just a job.
My nan currently had carers as she is 100 and bed bound. There is an online diary and my mum is often boiling with anger because carers have asked Nan if she wants her pad changing and she’s said no so they have left it!! Obviously there has to be autonomy but leaving a bed bound elderly person in a sopping wet or shitty pad is not ok! At school we still give a choice but it’s do want pink pants or blue pants or would you like Mrs LouLou to change you or Mrs x.
Mum & Dad have complained several times and things do get better. All I can say is make a nuisance of yourself and keep advocating for your mum, as someone else said if you’re able to pop in while carers are there, mum & dad are always popping over with shopping or to ‘fix’ things when the carers happen to be there so I think it makes the carers less likely to cut corners. Mum & Dad are retired so makes it easier but if you’re able to I do believe it helps and definitely don’t avoid going because the carers are there.
Sending hugs, it’s not easy and I’m dreading the whole process when my parents get there 😭

Are they definitely sometimes not turning up, or are they arriving and not able to get in? A ring doorbell could be useful for you to check on this.

My grandmother had dementia and had carers three times a day and she would often not answer the door so we had to get a key safe.

But even when the carers got into the house, she would often say she did not need anything. She would refuse a wash and say she was not hungry. The carers can't make her accept help. They can try some persuasion but there is a limit to what they can do.

Get in touch with the council (or care agency if you know who they are) and ask for feedback on what is happening, they should have a log of what the carers have done/not done. I wouldn't jump to thinking they are just not bothering. It is extremely common for people with dementia to refuse to shower or wash their hair.

Id get cameras in property for peace of mind

As a pp said, get a ring doorbell so you can see for yourself how long the carers are at the house.
Three and a half minutes is the record low for a relative recently, and it's supposed to be a half hour call.

Absolutely complain. We had some excellent carers for my mum who had dementia but also some that were very poor. Issues with timing & duration of calls, care plan tasks not followed, lack of continuity of carers with them regularly being moved round, supposedly to avoid

people gettibg too attached.
I do not underestimate the demands of care work and that some times delays or shorter calls are unavoidable. Sickess, emergency at a previous call etc - it was helpful when they let us know.
However there were also a number of examples of inadequate care. The worst was when I arrived home from holiday a couple of days earlier than expected due to DH being unwell. When I arrived at my mums the milk was still on the doorstep (odd), her incontinence pad was full to overflowing, wet and soiled bedding and dried leaks on the floor, no breakfast in sight, morning medication still in the dosette box. Also found piles of soiled clothes and bedding on the kitchen floor (despite there being a fully equipped utility area in the garage wih two washers, a tumble dryer and airing racks!) My mum was self fundinf so no issue about length of calls being limitted.
According to the care notes, the two carers had done the hour long morning call - got mum up, showered and dressed, made breakfast, supervised her eating it and given medication , leaving less than 10 minutes before I arrived! Clearly no visit had been made and the log had been falsely written up in advance.
Phoned the care agency and made a formal complaint - followed up in writing with photos. This led to the agency auditing all clients that these carers were assigned to and found similar levels of neglect and they were dismissed.
Going forward one of the measures put in place for my mum was that her carers were required to log in on arrival using the landline and then log out as they were leaving.

Post from LinaO about realitiy of being a carer is very telling in explaining much about lateness, not completing jobs and so.on. The amount of time given to do the job properly is usually woefully inadequate. However you need to record all instances of failure to fulfil agreed service and make sure the agency knows about this. Caring for someone with dementia is a skilled task and carers are usually untrained. I experienced all this back in the 1990s with.my late husband who had dementia. A nightmare. I ended up spending a huge chunk of my salary and all his pension employing private carers who I could rely on. I paid them a decent wage. Anytime I had to use social services it was a disaster and i couldn't rely on the service. Awful that so many years later there is no improvement or it is worse. Please don't hesitate in complaining but remember the carers themselves are being exploited. A national scandle.

Just to say that some self-funding clients do have to commission their homecare through the local council. Sometimes because they're rural and care companies don't cover the area, or there just aren't enough hours available.

My mum needed 4 x visits per day. 45 mins first thing in the morning, then 30 mins for each of lunch, tea-time, bedtime. This proved impossible to source privately, all local care companies could offer was one or two visits per day at maximum. This was preventing her hospital discharge.

Eventually one of those companies mentioned that the majority of their capacity was block-booked by the council and we might be able to purchase it through the council.

So that's what we do. Mum pays an annual fee of £400 to the council or the service and they allocate a care company. From there we liaise with the care company over visit times etc.

The council invoices Mum monthly for her care and the money is taken directly from her bank account. As with the OP, 4 visits per day works out to around £1,500 a month. After several years of this, Mum's savings very recently dropped below the threshold and now the council pay half.

But the care company is the same, there are no 'council carers', the care is sourced from the same private companies. I think the only other option would be independent carers or very local small companies, but finding those can be difficult.

Get cameras in and watch them. We got Tapo. Make them aware. Then make sure the care plan details all the tasks they need to complete and complain if they are not done. If they finish early put social interaction in the plan

How cooperative is she there very limited if she says no

DM 87 has Alzheimer’s and poor mobility - lives in own home with care package
1st experience was 5 years ago when she broke her hip and then had to have a hip replacement - she just kept sending them away and saying she didn’t need them - she did!
2-3 years ago with dementia worsening we tried again - didn’t go well - lots of different carers, no consistent hygiene as she’d just tell them she’d already had a shower and they never stayed the full time
We asked for a list of the care agencies that the local authority used and read their reviews CQC ratings etc - met with care manager of the one we chose and drew up a detailed plan of what was needed - which we have tweaked over time as things have changed
Very happy with them! DM also goes to day centre 3 days a week which she loves
what’s app group for family and regular carers works well as they’ll update how she is and if she needs anything shopping wise etc, or problems with tv or home stuff
We let them know if not needed as out for dinner with us
I would go elsewhere if you are not happy

I know that @TheTwinklyLemur has not come back. Having relatives to care for is hard so I understand but I do want to add to the conversation and hopefully support us all in the sad situation of watching a loved one receive less than adequate care.

I have just spent today with mum in her care home. Even that is difficult. Some incidents today ..,

When I walked in at 10:30 she said that she had not been given breakfast. She had a plate on her trolley so she must have been given it and mum had forgotten.

She says that they shout at her and push her into her chair. I know that Mum is trying to get up and she is at serious risk of falling. I shout when I see her trying to get up. That is why we could not leave her living independently. So it is true that they shout - probably across the room.

She says that they ignore her when she asks to go to the toilet. She usually sits in her room. I have seen her turn them away at 11:15 and then want them (she needs two people) half an hour later when they are starting to get everyone ready for lunch, Of course they can’t drop everything and rush to her.

She says that they regularly come in with hangovers and have bottles of wine that they drink from. Really????

Should I have complained about these incidents on her behalf ??? All I can do is say that mum says she is unhappy.

With the cameras it was easier to keep on top of what was going on with the carers but in the end she was not safe being left alone. Of course we cannot put cameras in bedrooms and bathrooms where many of the patients are cared for. That can be a problem.

We have got to keep advocates for our loved ones, be around, keep complaining when appropriate and keep praising as necessary. Just keep being around not always at the same time.

We also can keep sharing thoughts here. Love to everyone.