aibu to report my parents

[scentedgeranium]

Have name changed. I'm going to try to describe a difficult and ongoing situation which even as I play it though in my head sounds unbelievable. My dad has a triple whammy - loss of mobility, continence and vascular dementia. He is 84, mum is a fit 79. He is being cared for at home by mum with the help more recently of some live in carers who in fact live in a neighbouring property (mum didn't want them in her home all the time). She has done this under pressure from me I think. In fact I found both carers. The first one (hired private through an ad) was sacked, the second one thankfully comes from a reputable company where notice has to be given on both sides. She will not assent to having the right equipment int he home to look after dad, who needs lifting and transferring, not hauling around. He cannot hold his own weight at all. The care company who have supplied the very capable carer are insisting that mum gets a hoist for upstairs for dad to get him from wheelchair to bed. She is refusing. The company will now (reasonably I think) in all likelihood withdraw the carer because conditions aren't safe.
Dad has been hauled around for months now. I hear him in pain and distress. Mum rules the roost and controls dad, and seems to be lying to the carer, saying oh yes we'll sort it. I feel this will come to a head over the next few days though when the carer finally says no, I'm not allowed to do this because its not safe to me or my client. Which will leave mum yet again on her own hauling dad around in distress.
So the question is beyond telling her (which I have, time and time again) that this isn't right, and my poor confused, distressed dad needs proper gentle care, what can I do? Can I call their GP and ask for anonymity. It would blow the family apart if it was revealed it was me who busted her. And while that doesn't bother me right now it would have wider ramifications.
And to be clear this isn't a job for me either. One I really don't want to, and two, I don't think I'd be able to. I would rather spend my time being a lovely daughter to dad than a frazzled carer.
I'm sorry if I end up drip feeding. I'm not sleeping for worrying about dad. Sage advice please from anyone who has been in a similar awful situation.

The Mental capacity act states that if someone doesn’t have capacity due to dementia all decisions made for them have to be in their best interests and it has to be the least restrictive option. Your mum is therefore breaking this law.

If the carers have not reported the abuse to their management and raised a safeguarding against your mum, I would report them too for failing to protect the resident in their care.
And I would report the abuse via GP, social care, age concern... the care company, there's so many ways!

This is causing him physical pain every time it happens. So of course you need to intervene.

Apologies if this has been suggested already but the Alzheimer's Society have a great website full of useful info and a forum, Talking Point, that is very well used and is a mine of valuable info from people who either are or have been through caring for someone with dementia. I highly recommend it for you, now and going forward.

www.alzheimers.org.uk/get-support/dementia-talking-point-our-online-community

I'm really.concerned that the agency or.cared has not contacted Adult Protective.Services over this issue.

It would blow the family apart if it was revealed it was me who busted her.

So do the rest of the family agree with you? If so you all need to get together (figuratively) and tell her what she's doing wrong. It has to be a united front. Include something about how damaging this is for her as well. If she continues she is going to hurt herself and then they will both be going into care.

Unless the hoist is a ceiling attached one, any OT assessment is likely to say that 2 people must operate the hoist and move your father. This can cause all sorts of problems around care (cost, live in carers and hourly carers falling out).
As a compromise, would your mother agree to an OT assessment for a hospital / nursing bed? These have pressure / moving air mattresses and hydraulics to lift legs and sit up and recline etc. The carer then has the option to nurse your father in bed.
Your mother may find the idea of a specialist bed more palatable than a hoitst, and if your father needs continence aids and isn't mobile, it might lead to less painful for him to say in bed and get plenty of position shifting etc.

This does need to be reported. Awful situation. Sadly I've been there with an incredibly stubborn relative not accepting the help for themself and it turned out that the stubbornness and total unwillingness to accept any adapted equipment was a first sign of vascular dementia.

At the minute the care company are colluding with her by still going to provide care without the right equipment. They need to be taking a step back, making their terms very clear and then resorting to SS referral if the equipment is not agreed to.

If I was in your position I’d just report to social care myself.

Also, the suggestion to resort to a bed bound existence for your Dad to appease your Mum just isn’t fair. Being bed bound comes with its own new set of health risks, both physical and mental and will more than likely shorten his life as he becomes weaker and more deconditioned from it.

If your dad would be able to sit in a chair and enjoy his day if he just had a hoist then that’s 100% what should happen.

I think you should contact Social Services ASAP but reframe the problem slightly (to yourself) that you are not trying to dob your mum in as a wicked uncaring woman but to tell social services "look my mum's not coping with my dad's care - she's out of her depth - and he is suffering - what can be done to help?". Ask for an urgent assessment. Explain the problems and ask the social worker to emphasise that if your mum can't accept outside help and equipment to care for your dad safely then he will need to live away from home. Ask them to discuss if the time is right for him to live away from home or how everyone will know when that threshold is reached. I assume in her own way your mum thinks she knows what is best for your dad - even if she is wrong. Ask social services for help. Despite your parents financial means they might be entitled to some help with the cost of care which the social worker might be able to point to.

Yes it is true that remaining in bed shortens life. An OT would likely arrange a specialist chair at the same time as the bed. This can make bed-to-chair transfer easier if your father is able to sit up or is still fit enough to 'help'.
Arm hoists can be problematic for carers to use alone as leverage whilst keeping the patient safe is very difficult for one person and a responsible care agency would be reluctant to allow one person operation.

My DM cared for my DD at home with an extremely similar set of diagnoses. She was also very reluctant to accept any outside help until things escalated very suddenly.

Dad very sadly deteriorated very quickly which is common in vascular dementia- it tends to cause ‘steps’ downhill rather than a gradual slope. Anyway, after a dreadful few weeks of emergency intervention during which time Mum had absolutely no choice but to accept help and equipment, it was obvious he needed residential care. However, by then almost no nursing homes were willing to take him due to his very poor condition. He ended up in a place I loathed.

So I strongly advise trying to get your mother to consider looking at residential placements, maybe as respite initially, in order to give you more choice. Unless they fund 24hour care for 2 carers it’s pretty much inevitable unfortunately.

Best of luck. It’s fiendishly difficult.

So I strongly advise trying to get your mother to consider looking at residential placements, maybe as respite initially, in order to give you more choice. Unless they fund 24hour care for 2 carers it’s pretty much inevitable unfortunately.

That’s all very well but in London and the SE dementia care in residential homes starts at 50 grand a year. Even well off people have to sell their homes to pay for care.

Your Dad can get respite care for a week or more. Lots of homes offer this.
It's a good way to see which home suits.
My mum went to 3 different homes for respite over a 9 month period until we found the right home for her. It also gave us time to feel ok about her being in a home permanently. I highly recommend this.

And @MatildaTheCat is correct in what she says.

@TatianaBis

That’s all very well but in London and the SE dementia care in residential homes starts at 50 grand a year. Even well off people have to sell their homes to pay for care.

Trust me I know how much it costs. My FIL is in a home costing £1800 a week. However OP has stated that her DP are wealthy and buying live in home care is very far from cheap.

The main residence of a surviving spouse, ie OP’s DM is protected from sale to fund care as is any money owned by her. However to have the choice of a nice nursing home you do need very deep pockets. I don’t think OP has stated where they live.

‘Wealthy’ is a scale who knows where they fall on it. Doesn’t necessarily mean you have a spare 50-100 grand a year without serious restructuring.

Until you need overnight or nursing care, it can still be cheaper to have full time day care at home. Once you need overnight care and/or nursing care residential care becomes more cost effective.

A person with low mobility and incontinence and wearing incontinence pads overnight, thus doesn’t need to get up to go to the bathroom, may not need overnight care.

Dementia units are quite grim even in the most upmarket homes, and personally it’s something I would avoid until there’s no other option.

As long as DM accepts all the required adaptations, home care isn’t impossible. However if she continues to obstruct, DF may be better off in a home.

Social services have a service for vulnerable adults and I think you should at least discuss this with them. If you want to be don't confront your mum at all. I suspect she doesn't want him to go into care because she may lose her home?

For those mentioning respite care I was trying to get this for my mother but social services told me there was no funding .

Private respite care is not a problem though, lots of care homes offer it.

Another vote for adult social care I deeply regret not pushing harder when it was my dad x

Do you even need to buy these things? My mother got all sorts of equipment, large and small. Tried it out and if it didn't suit, they'd come and collect it next day. It would be a shame to go into a home for sake of something so simple. Can you just override her, order whatever's needed and see it installed?

Elderly people can be weird about money. My in-laws are wealthy but extremely tight.The only thing they will willingly spend money on is their hobbies, where money is no object.

FIL is deaf in one ear and has limited hearing in his other ear. He was selected for a trial for a new kind of hearing aid. It worked like a miracle, he had perfect hearing for the first time in years. It was life-changing for him.

He was given the option for buy the device for $2,500 at the end of the trial, but refused. They could easily afford it but chose not to as it was “too much money” and “not for the likes of us.”

Meanwhile, they will regularly drop many times that amount on an antique or a holiday.

OP, I think what your mum is doing is very cruel. I hope you manage to convince her to buy the equipment.

Whether it is bought or not is irrelevant. She's sent back stuff the OT has prescribed; she's sent back stuff I've hired (on the advice of the carer); Id like to buy a profile bed but she refuses.
Yesterday wasn't possible. I'm having another go at a chat today.