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.

@ChangeAgain2 The OPs mum has already said she does not want to go into a home. She may have to at some point, but if she can afford a live in carer that point may be some time away. What normally happens is people can only afford carers popping in so many times a day and someone reaches a point where that is not enough, but they can not afford more. Then they accept they have to go into a home.

@ChangeAgain2 That is very sad.

Watch daytime TV channels. ITV in particular is full of these adverts. My dad bought some stuff this way that he would not normally have bought.

Apologies if this has been said - your mum is entitled to a care needs assessments from your adult social care team and an OT assessment for the chair and any other equipment she needs. Both FREE services. She may be entitled to a disabled facilities grant for any adaptations/equipment. The Social Work team can also complete a mental capacity assessment if this is needed. They will hold your hand and guide you through the process, including what care and support is best for your mum.

I know. It was just an average.

Legal capacity is complicated. You can have capacity to make some decisions and not others.

It’s not cheaper to have live in care once a person needs care day and night. At that point a care home is generally cheaper partly because you’re not running a home on top.

I haven't read the full thread, but here's some initial thoughts.

For reference I had live in carers for many years due to physical disability. I don't now because my husband took over the care responsibilities.

1. 8k is a lot. Try looking at other national agencies. Depending on what your DM needs, there are much cheaper.

If you are able I would DEFINITELY suggest talking to the agency. My agency would have been absolutely appalled if my carer had started to ask for things like smoked salmon or organising a sales representative for me. Carers at ALL my agencies had a small food allowance per week. If they spent over that on their own food, they paid out of their own money.

How long has this carer been in place? She should be rotating every few weeks with another staff member. There's such a thing as a pairing breaking down because both parties get too comfortable and take liberties.

Why doesn't your mum have social services oversight? Even self funded people have the right to an assessment.

A good carer will promote your mum's independence. They absolutely shouldn't have deskilled her.

If your mum is saying things like needing a second carer for her nails, surely there's a question of whether she can make decisions?

Was there a meeting with the agency after your father died about a care package for your mum?? This should have been set up and paperwork done just about your mum setting out what the carer does and doesn't do.

@Mirabai Sorry you did not read what I said properly. Having live in carers is the most expensive option. OP has said she wants to do this to help her mum stay in her own home. A care home would be cheaper.
But employing live in carers direct will be cheaper than through an agency as is currently the case.

wrt agencies: we used Christies and it wasn't anything like that per week!

On the other hand they were clueless about cashmere jumpers and ruined all Mum's in the washing machine.

A riser recliner was great for my Mum when her knees went, but once dementia reached a certain level she couldn't manage the controls, which is an issue. Also a reason why stairlifts don't work for many people with dementia without close supervision.

She invited a bespoke recliner company to do a presentation to DM! So OP is here asking if the price is extortionate which it is.

You obviously don’t understand the world of carers and vulnerable people if you think any of this is acceptable behaviour.

You can sack a carer and an agency for whatever reason you like.

Yes, I think sometimes it’s a best guess based on experience, the age of the patient and at what stage the condition is diagnosed.

My mum is nearly 93 and has vascular dementia. She was 89 at diagnosis and the consultant advised that given her age and the advanced nature of the dementia at the time of diagnosis, plus the fact that she has other vascular issues, a staged deterioration was likely - marked changes followed by plateauing out for a while until the next event.

He estimated that without any other events related to other conditions, within four to five years she would be nearing end stage with a significantly increased risk of heart attack/stroke. Unfortunately his predictions were fairly accurate as nearly five years later mum’s in very poor health and I’ve watched the essence of who she is disappear in front of me until she’s almost unrecognisable.

Thankfully she’s still manageable at home with a little personal care bought in privately. She lives with us but it’s anyone’s guess as to whether this will still be possible if she has a major event. We have a do not resuscitate order in place because the consultant advised that in the event she survived a major stroke or heart attack there would be little to no quality of life. I really feel for anyone caring for a loved one with any form of dementia. It’s a horrible, cruel disease.

@Mirabai you can get rid of an agency. If you are employing a carer directly you have to follow employment law.
The chances are the carer is simply not that experienced about what is okay for her to do and what is not. It is hard to recruit carers at the moment, especially for people with dementia.

OP, is your Mum getting Attendance Allowance? It isn't means tested and can help considerably with care costs.

Thank you so much again. It's been such a useful prod. As a result of all these valuable contributions I've taken a morning off work and worked the phones.

1. The consultant's referral for OT assessment hadn't been put through, I don't know, classic NHS disjointedness. I've now made a request for a referral which the call handler dubbed 'urgent'.
2. I've been in touch with her GP to get their advice. Also recommendations of private OTs should we need to get an assessment in a hurry.
3. I've been in touch with an agency through which you employ carers directly (but they supply cover etc) and which costs considerably less. This is something I can push the button on should we pivot away from the current agency.
4. I've spoken to the carer, who was pretty rude to me. I think she thinks we're penny pinching evil kids. As I keep saying, it may be that this is the right chair for her but we're not getting it without due diligence. Apparently the 'chair consultant' who came round was 'lovely'. I did keep pointing out that he's a salesman so of course he is. She then told me that it was up to me 'to break the terrible news' to DM that we weren't getting it immediately.
5. Spoke to DM and asked her to give me two weeks to get the OT in. We need a whole house assessment for her needs rather than the piecemeal approach that was all about my dad. She was very upset and obviously angry at me.
6. I'm going to take a day off either my family or work to go there in the next week and try to talk to her about how she'd feel about changing carers.

In answer to those questions about care assessments and adult services etc, we did have OT and equipment interventions from via NHS and social care for my father and when he died, they fell off. It's a tricky situation when you've got one very very very physically ill parent (but the 'brains') and one less ill but not compos mentis parent and then the former dies. You end up with a patched up solution that is suitable enough without being entirely suitable.

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.

The carer was rude to you? Ah. That's a carer who has lost sight of what they are there for. Creating difficulties in the relationship between your mum and you is very definitely not their job.

OP she won't want to change carers and so I think you will need to brace yourself for a difficult conversation here.
She will be angry of course and the chair will be an example of how you are being unfair etc
My recommendation is that you go in with a clear plan. This is not a conversation about wants but a conversation about needs. What she needs in terms of support and how this will be delivered. She will be angry and upset and it will be for you to weather the storm until it dies down. And it will.

As a PP said if this were a child you wouldn't hesitate to do the right thing against the wishes of the child. Keep this in the back of your mind and good luck

I don't know but don't you have poa ? My mum is in the same situation and I have control over finances because she is the same with money now .

We have spent £100k on care already !!

Anyways she has a credit card with a max limit of £500 for her safety which I pay off so no chance of her buying random shit she doesn't need ..

Watch those carers , we had one who loved shopping and mum was buying her all sorts !

For the last five years I’ve been caring for my mum who is 93 and has advanced vascular dementia, with private personal care bought in. So your assessment of my understanding is a little off. I wasn’t commenting as to the fitness or otherwise of the carer, I was simply pointing out that you can’t terminate on the grounds of financial abuse - or any other misconduct for that matter - without evidence. Of course the OP can sack the carer on other grounds, but it still has to be done according to the law and according to the terms and conditions of the agency, depending on whether they or the OP are her direct employer. And if you bothered to read the rest of my post, I did point out that a budget and a limit on spending need to be in place because as her DM’s LPA, it’s the OP who is ultimately responsible for DM’s money, not the carer.

Hello op. This all sounds really tough. The change in your mother re money and food etc may well be the dementia. Also even her reaction to your father's illness and death may have been heavily affected by the dementia. It does kill people. My father was fit as a flea but it still killed him. Took about 6 years from diagnosis to death and it was heart wrenching. In the early stages his reactions to a couple of bereavements were odd. I have also known people with dementia to get very angry with family and accuse them of stealing money. It is such a difficult thing to figure what is the disease and also accept the disappearance of the person you know. My father was in a nursing home for the last three years of his life as his needs were too great. Good luck with all of this. The riser recliner will further reduce your Mum's mobility by the way. It should only be used if it is really needed and she can cope.

I think you can’t do right for doing wrong by your mother. So the only way through is to make the best decisions and detach from her a little. I think the carer is colluding with her and you’re being painted to the carer as unreasonable. Having one carer must be claustrophobic for them both. I suspect a care home is the best solution but she’ll be resistant…

She won't want to change carers. That's not her decision to make, longer term she can't afford it.

It may be better that you look at residential care anyway now ready for a time when she needs moving.

If the current carer is via an agency then are you ending the contract with the agency rather than the employment bid the carer?

I knew a carer who was bought a car to run her charge around. She got to keep the car.

This was my point too. The OP has updated and advised that the agency are not the carers’ direct employer - OP is. And as such she has to follow employment law, and to sack someone for misconduct of any kind without evidence, is folly.

Re: chairs - I started looking into them for my dad as he couldn't get off the sofa without a lot of difficulty. He was resistant to any attempts to change things because 'he could manage'. I ordered a couple of brochures online - cue deluge of phone calls, I'm so glad my dad didn't get them. You couldn't just order, you had to have a salesman round to make sure you got the right one for you - it really reminded me of the stories you used to hear about double glazing salesmen not leaving until you had signed up. In my dad's case, he did an about turn and decided he was going to move into a care home so we didn't go any further. But there is definitely a lot of hard-sell, and obviously the salesman's commission comes from somewhere. My dad is OK cognitively, my mum on the other hand has Alzheimer's and the personality changes you are seeing sound familiar too.

The carer being rude sounds like she's on the defensive. I suspect if you scratch beneath the surface you'll find your mum will have given her some of the stuff she's bought. In fact I wonder if she's connected to the person she brought in to sell the chair. Any decent care professional would listen to and understand your concerns...actually any decent care professional wouldn't have let this situation arise in the first place. Sounds like she's got her feet right under the table.