DM wants a riser-chair costing £4.5k! Advice v welcome

[Valleyofthedollymix]

DM is 82 with moderate dementia. It affects her mobility more than her cognitive abilities but I don't know how much this is to do with the dementia and how much is due to her lack of exercise over many years.

She is currently burning through finite funds by living in a large house with a very expensive live-in carer through an agency. After a lifetime of being careful with money, she's spending like Liberace and it's going to run out, especially since I think she'll live a long time. Frustratingly, the extravagance encouraged by the carer, for example endless new pairs of trousers and cashmere jumpers (one week she bought six). If we query this spending, it gets turned into a black mark against us - for someone with a failing memory, DM can keep a really good tally of the ways in which we've 'denied' her.

Anyway the latest was the carer organising for a bespoke riser recliner chair company to come round to demo. DM apparently 'fell in love' with the deluxe one and has chosen the fabric etc. It costs nearly £4600. This feels like an awful lot to me but apparently, it's tailor made for her spine, size etc.

Does anyone know if this is worth it? Of course, if it's a buy once buy the best situation and it'll change her life, fair enough, we'll find the funds. But I wouldn't spend that sort of money on anything without due diligence. I feel like we're being bounced into it. I'm also unsure of the wisdom of these chairs at all because might it exacerbate my mother's immobility?

So, if anyone has any knowledge on how much you need to spend and what's worth it, I'd be vvvv grateful.

We got one for my late husband. Brand new. (Not bespoke.) Cost around 1k. It was bought at the end of 2020. 4k seems excessive, but maybe that's because it's bespoke?

Even then, most firms let you choose the fabric and don't charge that much.

OP updated somewhere upthread that the agency is not the carers’ employer - OP is. So in letting the carer go, she has to be careful to follow the law otherwise she’s open to legal action.

You need to tell the carer that you have a legal duty to act in your mum's best interests and that does not necessarily mean spending all her money buying things she doesn't need and potentially running out of money that could and should have been used on her care.

The carer also needs reminding of her actual role here and the importance of professionalism.

Agreed. Hugely expensive, takes ages, and OP can manage the money herself.

Just to add that a temp carer recommended that we get secondhand, but DH said that he wanted me to have something new in the house, and we got one that fitted the decor. (Most of our furniture is/was secondhand, apart from our bedroom furniture.)

Also...when DH was close to 80, his best friend told him to start treating himself to the things he wanted. He'd always wanted a gold watch, so I got him one for a birthday...that kind of thing.

I have no regrets. We weren't well off and I'm not well off now, but I have enough. (Mortgage is paid off and my pension is enough to live on.)

I do think she'll live a long time as she is has no other ailments. As with PP, I don't think 15 years is improbable. And nope, the money won't last that long to keep her at home as we'll need to sell it to pay for care.

@Valleyofthedollymix I think you have to accept she may live for much less than 15 years.

Dementia attacks the brain and all its functions, not just reasoning skills.

My late Dad died from dementia at 93. He was diagnosed 3 years prior to that.

You've already mentioned her mobility issues.

There is a type of dementia- Lewi Body Dementia- which affects mobility.
I am sure my Dad had this although his care was very poor (after he was diagnosed by one brain scan it was never followed up.)

With hindsight (and a lot of medical research from me) I think he has LBD.
It can start with Parkinson's type symptoms (especially shuffling or tremors) along with hallucinations. My Dad shuffled for several years prior to his diagnosis.

It's evidently very hard to diagnose LBD and needs a specialist neurologist looking into what an 'ordinary' neuro has diagnosed as dementia. (Dad's was vascular dementia but as I say I think he was misdiagnosed and he also had some comorbidities - kidneys.)

Just because your Mum has no other physical ailments yet, sadly it doesn' t means she won't. The brain literally dies off with dementia and she may develop other things.

I hope you find a way forward.

If it's not been asked already do you have Power of Attorney? (Finance and Health?)
You need to be in a position to stop her wild spending (clearly a sign of her illness) if it's going to affect her standard of living.

The carer seems to have become very invested in your Mum and what she needs and wants and its certainly not for her to tell you to 'deilver the bad news'! If I am honest I would ask for a new carer - my spidery vibes are saying that there is something going on.

Oh no, I'm not the carer's employer - she's through a very expensive agency (nationwide, very well known). I'm investigating employing a carer through an agency where I would be the employer. Of course, that comes with all the risks mentioned, but I'd much rather the carer got the bulk of the fee.

Such good advice to have a plan of action re. discussing changing carers with DM. As it is, the carer is having yet another beef with the agency (that I have to listen to) so I'm really hoping that the problem is resolved for me.

@NoggintheNoggin yes we do have full POA (me and my siblings). I wonder if it is LBD as her mobility is worse than her cognition.

I've tried to prepare myself that it will be a short time, but equally I've prepared myself for it to be 15 years (lots of longevity in the family). But in reality I can't prepare myself for either. They both make me feel heartsick.

The current carer is not mums friend, not family, she's employed to do a job, not criticise you, what's her beef about, why are you having to listen to that conversation. Get the assessments done, maybe an independent health worker will suggest different approaches. What does the current carer do apart from spend your mums money.

No OP said the opposite, the agency are the carer’s employer (hence the fees).

It's worth reading up about LBD.

There is plenty online on charity websites etc.

Being realistic I'd say living till she was 98, already with dementia at 83, is unlikely.

With my Dad, he eventually became so unstable that he was falling over in the bathroom and in the garden.

He died after being taken to hospital for a check up after falling.
He really lost the will to live there and the little mobility he had left, because unlike at home, because he wasn't 'made' to walk and keep his muscles strong. He faded away over 3 weeks .

It was sad because they said once he was more mobile they would discharge him, but with hindsight, if he had LBD , that was never going to happen.

And she’s with an agency which makes it easy. You do not want an inexperienced carer living in with a dementia patient full stop. It’s not OP’s job to explain boundaries and professional conduct to the carer, it’s for the agency to ensure she has the right training and it doesn’t sound like they’re doing a good job.

My late dad bought a riser recliner chair from an every day furniture store, although it wasn’t bespoke there were options for width and height of the chair. It seemed expensive to me but wasn’t anywhere near £4000.

it difficult with carers. My sister had to stop my parents giving the carers £200 each as an Easter present, as they had been telling them how hard up they were.

I feel your pain about carers (pass agg whatsapp's are the bane of my life), but that's not what I came here to say.

One thing to think about in all these assessments is whether both the eating and spending are not just ways of coping but - as someone mentioned above - symptoms of dementia. In which case she is not necessarily acting in her best interests. And possibly the carer should be a bit more careful about letting her buy things and eat sugar.

It's not that unusual I think. A friends's GM had dementia and was an early internet adopter; her family were endlessly having to send back cases of champagne and Smart cars...

Also - if she has dementia, where you and she are now is not where you will always be. We did not get my DM into care early enough, and now she is utterly dependent on her house to know what she is doing. She would have been much happier in a home a few years back. She currently has one carer, but if she starts getting up in the night, or losing mobility then this is going to have to change again. Your mother has a right to say she wants to stay in the house, but you do need to work out all the eventualities and options.

I’m surprised you don’t have higher standards about carers then.

Who said anything about firing her financial abuse? She’s shit all round.

OP just rings the agency and tells them she wants a replacement, she also needs a chat with them about the professionalism of the carers on their books.

Came here to say this; up to you raising concerns she has been pleasant and you’ve even felt grateful to her despite your Mum shelling out thousands for the service because, as you rightly said, she does what you simply can’t do.
She must have felt indispensable; but now you’ve started questioning, she’s definitely rattled and can see her cushy number may potentially be drawing to an end, she’s turned and has been rude to you.
If your Mum isn’t opposed to the idea a nice residential home equipped with any number of chairs and carers may be a better option all around.

It's not that unusual I think. A friends's GM had dementia and was an early internet adopter; her family were endlessly having to send back cases of champagne and Smart cars...

OP says her mum cannot use the Internet or her mobile.

All this online spending is facilitated by the carer.

I agree with this.

And anyway, you just tell the agency that you don't want her back and that's the end of it. No angst. You don't even have to tell her yourself.

BTW care agencies don't train their carers. They just place them with clients after they've recruited them. Yes, even the expensive ones.

OP I would contact the agency and complain about the carer being rude to you and inviting a rep into her home without your agreement. Focus on the carers worst behaviour, it makes a complaint stronger than throwing every concern in there.
Hopefully if the agency are already looking at the carer the they will sack her making it easier for the change of carer between you and your mum.

I don’t think OP needs to give up on carers yet. I went through 2 agencies before I found our current excellent agency, which I would highly recommend, but OP’s DM is not in the London area.

I’d try to find a better carer/s for a less extortionate cost before giving up and going for the home option as her mum is not keen for the moment. That said, it would be much less stressful once she is in a home.

The one I’m using now do give them training, in addition to the professional training courses they have done independently. And tbh it really shows.

But otherwise agencies are responsible for checking they’ve done the relevant training and work experience.

I know exactly how you feel - the carer is taking the proverbial and you feel your mother is being emotionally abused, there is something wrong with this whole situation. Like a teenage rebellion in reverse or something. Something is not right and it is bugging you. I would change the carer, having spoken to her first, pay her to say to your mother 'she is moving away because of family affairs' and find a decent one. Nothing to do with dementia, some carers manipulate or 'direct' their carees in any direction they want.

I like the main carer who makes my life easier by taking a lot of initiative. But god she loves spending other people's money. So much smoked salmon! She's always on at me for something - the most expensive Dyson, a new bigger TV etc. We are in control of my mother's finances but carer can use the card and also asks for stuff. I don't think she's dodgy, but she's deeply irritating.

Uhhh it sounds like this carer is thoroughly in the driving seat here. Why is she demanding stuff? Why are you letting yourself be railroaded like this?! Are you intimidated by her or something?

Stop this spunking money on everything and anything – it is entirely within your power and it sounds like you have good grounds for demanding and expecting more prudence.

It may well be that the shopping & 'getting one over' on OP are giving DM a pleasure 'hit'. This in turn will make her easier to deal with for the carer.

So the carer may be facilitating the spending and excess sugar eating as a way of sedating DM. The carer may not see it like this - just sees that shopping and sugar make DM happy and compliant. Denying DM makes her sad/angry and difficult.