Uncle with dementia in care but being neglected

[Ibloodylovetea]

I have an aunt & uncle who live about 1 1/2 hours drive away from me. My own parents are (alas) no longer with us. Both aunt & uncle in their 80's - they have 2 sons who live a very long distance away (talking 4+ hours). Their DS visit about every 6v weeks as they both teachers they tend to only be able to visit around the same time. Aunt had a stroke a few months ago which has left her significantly disabled. Uncle has dementia & SS took over & put him into a care home as he'd been bed-blocking in a hospital (following a fall) for about 3 months. i visit them every other weekend. For context I'm 61 & still work full time, also have 7 <step> GCs who I need/want to spend time with as well as out DCs - both DH's and mine.

So, since going into care (2 years ago) uncle has fallen & broken his wrist, dropped a hot drink into his lap & suffered major burns &, last Sunday when I visited, I found him on his bathroom floor. I went to find someone to help to get him up, but it took a long time before the person who I spoke to could get help. I rang my cousins to express my concerns that I feel that he's being neglected, but due to the distance & their jobs they can't visit more often. Also, due to his high care needs there isn't anywhere else that can take him. When I visit I frequently find him wearing someone else's clothes that don't fit him.

I rang both cousins to say that I was concerned that their DF was being neglected & wanted to report the home to the QCC - was basically, was told to but out.

So, do I 'but out' & stop visiting? Do I report the home (am thinking that I really need to do that, despite their feelings).

Aunt is doing OK ATM, but, as I say, is significantly disabled & I take a freezer-full of home-cooked food when I visit, arrange for meals to be delivered, arrange home delivery from Tesco etc.

Opinions please.

The things you have described don't necessarily point to neglect - perhaps his children have regular conversations with the home and have a greater understanding of what has happened and what his risks are?

Falls in care homes are a regular event, being in 24 hour care might reduce the risk of a fall, but can't prevent them altogether. A fall occurring would only be classed as neglect if the person e.g. was supposed to be on a 1:1 staff ratio because of their high falls risk and that 1:1 wasn't provided, or equipment they were supposed to have to reduce their fall risk wasn't there, or if a member of staff did something wrong to cause the fall.

Similarly with the hot drink, sadly accidents happen it doesn't necessarily mean there has been neglect. it would be neglect if he was e.g assessed as needing a sippy cup or cooler drinks and didn't have them and was provided with a hot drink when he shouldn't have been. For lots of people a properly hot cup of tea remains important to them even if they have a cognitive impairment.

When you say it took the person you spoke to a long time to get help for the most recent fall do you mean, they took a long time to be bothered to get help or they needed a specifically trained person to do it (e.g. a nurse with a hoist) and one wasn't available immediately. The advice generally is not to move people who have fallen without proper training and if there is any possibility that something is broken not to move them at all without paramedics in attendance to convey them to hospital. That can often mean making people as comfortable as possible on the floor until help arrives.

If you have neglect concerns there is little point reporting them to the CQC, all CQC will do is pass them on to the Local Authority to investigate so you may as well cut out the middle man and make the report directly to Adult Social Care if you genuinely feel he is being neglected.

The clothes thing is poor but incredibly common - best thing you can do to help there is offer to write his name in sharpie in prominent places in everything he owns to stop it wandering in the laundry.

Thank you for your input. Uncle didn't need a hoist, just would have been unsafe I would have helped (& offered). My concern when he fell was that I got the person in charge, she pressed buzzers, no response, then she asked a couple of care assistants who were chatting in the corridor to help - they said that they were going off shift shortly & couldn't. There are ignored buzzers going all the time. I've spent hours sewing name tapes into his clothes so no excuses there. I've also been there at meal times & witnessed the poor quality of food they're being given. If it was my father I'd remove him, but then - where to if care needs so high & so few places to put them? I live in the South West with a high number of elderly people & the young people (potential carers) can't afford to live down here.

The whole place stinks of wee & is a maze of corridors with nothing to help the residents find their way around. I have a degree in in health & social care & it shocks me.

Uncle tells me that he's often fallen & been ignored. But then he has dementia & tells me about how they all went out in taxis on a visit which, when I check, I find is not true.

Thank you for the advice about about reporting them to Adult Social Care. I will do that, but suspect that, given the lack of adult social care facilities in Cornwall, they will ignore it.

Dear God I hope that I don't get dementia 😩

I would be installing hidden recording equipment to uncles room!

You could phone adult safeguarding and speak to them about it. Another helpline is Age UK.

Write to his social worker.

Get POA.

Unfortunately you can't get POA unless the person needing it has capacity and can consent. Capacity can be deemed as fluctuating ie. People can have capacity to make some decisions but not others, but any major legal undertaking would be subject to the opinion of health professionals and legal professionals. It's not that easy Unfortunately.

And sending solidarity to the OP - these situations are heart breaking on every level.

unlikely he will have a named social worker if he is settled in residential care

best to ring Cornwall adult social care or use their online reporting form

https://www.cornwall.gov.uk/health-and-social-care/adult-social-care/safeguarding-adults/#public

how do you propose OP gets LPOA if her relative has lost capacity and has children who would quite rightly object to their cousin attempting to get it because she thinks they are doing poor job? That's an absolute non starter of a suggestion sorry.

You could try talking to your local Healthwatch team about it, they may be able to advise and are authorised to do Enter and View visits.

Out of interest, why did the sons ask you to back off?

Sadly, I agree with PP that falls / accidents can happen anywhere and it's common for people to wear other people's clothing (but shouldn't be)

But, well done for visiting so often and providing food for your aunt

Id report.
Some of these care homes are an absolute shitshow. Some are amazing.
Can he be moved to a closer one?

I had an aunt who had dementia and was in a care home recently. It sounds very much like the care home she was in. She was quite often dressed in clothes that weren't hers so I think this is quite common. She had falls as well but every time they phoned me and let me know what had happened. With regard to hot drinks can you ask that he has his tea/coffee in a sealed cup. My aunt was ok with drinks but some of the other residents had these type of cups. The home also stank of urine but I think this is also quite common in some care homes.

Also buzzers were being ignored and patients were calling out but I think you have to remember that they know the residents and the ones who genuinely need help.

I was able to visit my aunt at least twice a week and I got to know some of the residents quite well. There was one man who would sit in the lounge and would shout for help but he didn't really need anything.

Thank you all for your input.

My cousin (who told me to butt out) has POA &, think feels guilty that I'm doing loads for his parents-which is silly because I live much closer than he does & no-one's blaming him for not doing more.

When uncle was bed-blocking DH, me, aunt & cousins (when able) visited dozens of homes, but all said that they didn't have space for uncle due to his high care needs. SS put him in the one that he's in ATM. My concern is that there are lots of low-level neglects eg: me discovering he had 'nappy rash' due to them not changing his pads when needed, sometimes he stinks because he's not been washed, I visit at (say 11:30am) & he's still in bed because they don't have enough staff to get him up, he's lost lots of weight because they don't encourage him to eat, just remove his uneaten meals etc. I didn't feel a need to bore you all with the details. As he's not my DF I can't move him. I just feel so badly for him & my cousins just say as SS approved the home he must be OK.

I guess all I can do is continue visiting when I can - vary the times &, when I can, the days & keep an eye on them both.

I'm keeping a diary & will report the neglect.

Thank you for your support. It's a shit situation for the poor man isn't it?

I’m afraid this is all completely normal for “care” homes and will likely only get worse. The standards of care are appalling but the reality is also that you just cannot provide the level of care some people with dementia require without having at least one carer for every two residents which will never happen.

Add in that people who get rejected from night fill at Tesco will breeze into a position of “carer”, get maybe two days face to face training with the rest online modules for which the assessments are ridiculously easy. The homes just don’t care.

NHS long term dementia wards are even worse as they take the patients the care homes won’t - those who scream continuously, headbang the walls, eat their own faeces. I’ve worked in both private and NHS older adult care and it is really grim.

It’s one of the reasons I’m really pro assisted dying. Even though people with dementia are largely excluded from existing assisted dying programs (such as those in Australia), I believe there is scope to have them included.

As a sub-note - former racing driver Sir Jackie Stewart was on TV months back demanding better care for people with dementia- more needs to be done, better standards, better trained carers etc - whilst admitting he had a team of 8 full time nurses providing 24 hour care for his wife.

Advancements in treatment for cancer, cardiovascular disease and diabetes mean many people are living longer than they otherwise would have and many of them will develop dementia. It’s an issue no one really wants to tackle as it’s simply too costly.

It doesn't sound great. My dad has advanced dementia and is in a nursing home. It's clean, doesn't smell and the staff are brilliant. They really look after him. He's not had a major fall there yet, but he had them frequently when he was living at home.

Not all nursing homes are bad. My friend's Nan with dementia is in a Colton care home and is really happy & treated well.
But I've known a carer who worked at a different Colton care home and she said the management were awful.

So homes vary even within companies!

Sometimes the best homes are the cheap and cheerful ones too.

It's a bit bloody rich that they're telling you to butt out. Are they going to miraculously step up then?

And what a shocker that it's men, leaving all the work to the woman of the family ... and a woman who's not even the child of this vulnerable couple!

Totally agree - I suspect that it they had a sister things would be different.

My gran recently died in a care home. They were pretty good though. On visiting the care home initially, to assess its suitability, the manager advised my mum 'if you visit a care home and smell urine, walk straight back out'.

@Ibloodylovetea

Yes, it would all be left to her! I am actually furious on your behalf, OP. They should be falling over themselves to thank you.

Please look after yourself too. You are very kind but they are not your parents. My mum did all the legwork for my gran - who recently died with dementia in a care home - while her feckless brothers did nothing.

I helped my DM care for my DF for many years - went to their house every morning & evening to help her get him up, get him to bed & then in the night when he fell to wait for ambulance to arrive as we weren't able to lift him safely. Cousins never ever visited, but aunt & uncle were regular visitors in those days which is why I feel a need to support them-in gratitude for the way that they supported my DPs. Not only that, I love them both.

My DB was worse than useless, only visited about once every 3 months & then expected DM to buzz around looking after his needs as he said he couldn't bear to see his DF deteriorating. But that's another story.....

Mum is in a Care Home, she’s in the EMI unit, due to her high needs (which is mostly dementia patients). She has also had a massive stroke so mostly immobile.

It does smell of Wee, I think that’s pretty parr for the course.

The staff are lovely, my mum is a nightmare, and they are great. Show real affection, and care.

She wears her own clothes, the woman who does the laundry is fastidious in this!

Food is a bit bland, it’s all cooked on site, and is perfectly ok, but we take in treats.

She’s well looked after, clean and fed, and safe. It’s not The Ritz, it’s a nursing home.

Your relatives should be getting better care

@Pippa246

"As a sub-note - former racing driver Sir Jackie Stewart was on TV months back demanding better care for people with dementia- more needs to be done, better standards, better trained carers etc - whilst admitting he had a team of 8 full time nurses providing 24 hour care for his wife.
Advancements in treatment for cancer, cardiovascular disease and diabetes mean many people are living longer than they otherwise would have and many of them will develop dementia. It’s an issue no one really wants to tackle as it’s simply too costly."

Yes, coming here to second the above.

When my FIL had dementia, I helped look after him at home alongside my MIL. Eventually his needs got sky high and we had to employ a carer to come during the weekdays. Even then, the house smelled of shit and piss from time to time. We'd clean up as soon as it happened, but it was UTTERLY RELENTLESS and it went on long enough to nearly break us.

The UK badly needs to sort out social care but we all need to be aware of the sheer amount of work it takes to care for someone with dementia, both emotional and physical. After seeing my FIL's life continually extended by the use of antibiotics (for a chest infection and then for multiple water infections) I think we need to take a good hard look as to whether someone with advanced dementia can consent to life-extending treatment/heroics or whether there should be an automatic opt-out.

OP you are very kind to visit your uncle and help your aunt too. I suspect the "butt out" implication is because your relatives feel guilty about how much help they can feasibly provide while balancing lives of their own. Maybe they are experiencing carer burnout or need to prioritise other things and are reacting defensively. Even looking after my FIL at home there were people who told us we ought to be doing this/that/the other and had we looked at a care home? My MIL in particular found these comments hard to deal with because she took them quite personally.

Your relatives should be getting better care

I've supported my aunt to get Attendance Allowance & have arranged for carers to go in twice a day. She's an active member of her local church & gets lots of visitors. She's doing very well - especially now she doesn't have the burden of caring for uncle. I keep my concerns from her - she doesn't need the stress or worry of it all.

It's lovely to see them both when I take auntie to visit uncle - they have a kiss & a cuddle & I leave them on their own & say to take as long as they want & that I'll wait in the car. After 60-odd years of marriage, they still so much in love. 😍

To get power of attorney the uncle would have had to agree to this before he had dementia
Op I can understand why you're concerned unfortunately many care homes are poorly staffed ,and these kind of incidents can be common and no its not good enough
I was a nurse on a dementia ward and the clothes thing happened there too
The CQC can do unarrarraged visits .