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.

I had POA for an elderly aunt for 18 years. I invoked it when she was diagnosed with dementia and had to organise everything for her until she died aged 99. I know how one starts with what looks like a huge sum of money and how terrifying it is, a few years down the line, to see how little there is left. IME well-looked after dementia patients can go on for a very long time. If she doesn't have a history of cancer or heart disease and her dementia is in its relatively early stages, I think you are wise to work on the basis that you're in this for at least another 10-15 years.

In your shoes I'd invoke the POA now and get more involved myself. I know you don't want to, but it's necessary. Give the carer a budget and make it clear that any extra spending needs are to be run by you. Set a budget for weekly shopping/ establish a weekly menu that will allow a few treats but not a life of smoked salmon and fillet steak. Have a weekly allowance for extras and treats. Perhaps you could do an online shopping order each week? I had to sack one of my aunt's early carers who ran up regular bills of £20+ at the fishmonger each week buying crab and prawns — which my aunt didn't eat...

Is the carer seeing your mother's bank statements and other financial paperwork when it's delivered to your mum's home? That needs to stop and everything needs to go to you so you can manage it. Your mother no longer has the capacity. Your mum's undergone a major change in personality from parsimony to being a big spender. This is not uncommon: that's why companies can sell chairs costing £4.5k to the elderly. Is the carer going to get a cut of the £2+k profit the salesman makes on each overpriced chair, I wonder?

I would contact the agency and ask what their policy on carers facilitating clients to spend unnecessarily is and take it from there. It's the carer's job to find ways of not going along with buying six cashmere jumpers at a time. She is caring for someone with dementia and that often requires saying no and holding a firm line.

Once I had POA I'd find a reason to get your mum into a good care home (a posh swanky one would be good) for 2-4 weeks respite care. Maybe you say the house needs to have major work (roofing work, new heating system) and suggest a break for her while it's done. Hope that she loves 'hotel life' — which is what my elderly aunt called the care home experience. If necessary, buy in a carer to visit the nursing home and do your mum's nails a couple of times a week or take her out on trips, to ensure that she's has a happy experience.
With luck your mother may decide the care home is where she wants to be.

I'm sure you'll attract the 'it's her money, she can do what she wants with it' brigade. Ignore. In her heydey she would have agreed with you that the money should be conserved, not wasted. Ask yourself what your mum would have wanted when she was 40, 50, 60 and base your decisions on that.

All good points. But even with DM’s LPA the OP can’t make the decision about full time care without DM’s participation. Capacity isn’t easily defined and the mental health act underpinning LPA’s states that as far as possible the donor should be involved in any decisions made on their behalf. So unless DM agrees to go into care, or it’s deemed necessary for her own safety by a medical professional, she can’t be forced.

OMG, I've just seen that the carer has your DM's bank card. This is not on and a really good carer wouldn't want to take the risk of being accused of financial abuse or fraud. This agency she works for should be horrified.

It's time to step in a sort this mess out.

Valleyofthedollymix · Yesterday 15:55

@mrsm43s I see your point but it just feels incredibly wasteful and consumerist. Like, technically I could afford to fly first class, but I never would because it's a waste of money and I'd rather spend it on my children or give it to charity. And yes it is her money, but money she's inherited and I don't think her hardworking ancestors would want it pissed away like this”

So, this is about inheritance?

Also peoples dementia can be masked while they are in their own home and routines. I was shocked at how bad my dads dementia was when he had to move out of his home.

Honestly, I'd look at homes. My nan has dementia. She has no idea who we are anymore. She's in a home. She has company, entertainment (they have a singer and a pianistcome in), a hairdresser comes once a week as does a nail technician, all her meals are provided, the doctor comes into the home as well. She is actually so much happier. She used to have her own apartment, inside the home, but as her needs got higher and her condition got worse it becomes unsafe. Having access to cooking facilities was dangerous for her. She now has a bedroom and bathroom. I think for the money your spending you could get 24 hour care with everything included. Nans is 2k a week but it's in central London.

*Once I had POA I'd find a reason to get your mum into a good care home (a posh swanky one would be good) for 2-4 weeks respite care. Maybe you say the house needs to have major work (roofing work, new heating system) and suggest a break for her while it's done. Hope that she loves 'hotel life' — which is what my elderly aunt called the care home experience. If necessary, buy in a carer to visit the nursing home and do your mum's nails a couple of times a week or take her out on trips, to ensure that she's has a happy experience.
With luck your mother may decide the care home is where she wants to be.

I'm sure you'll attract the 'it's her money, she can do what she wants with it' brigade. Ignore. In her heydey she would have agreed with you that the money should be conserved, not wasted. Ask yourself what your mum would have wanted when she was 40, 50, 60 and base your decisions on that.*

All of this would be likely to be deemed as curtailing DM’s freedom and as such would be breaching her human rights. Having an LPA doesn’t confer the attorney with the right to make decisions on behalf of the donor without their agreement if they are in any way able to participate in decisions about their care. The decision shouldn’t be based on what the attorney thinks the donor may have wanted when they were younger - they have a responsibility to do their best to act in accordance with what they want now.

If she continues to gain weight at this speed a made to measure bespoke chair may not be the right size anyway when it arrives , good luck getting an ot visit and a new care agency, it will put your mind at rest.

But it doesn’t sound as though OP’s DM is anywhere near this stage. And if she doesn’t want to go into care, power of attorney doesn’t give the OP the right to force the issue unless someone qualified to do so, declares it necessary for medical or safety reasons.

People do not understand legal capacity. The OPs mum is still an adult. You can't make her do things like go into a home.
OP has said she is going to employ a carer direct instead of through an agency. Although live in carers are expensive, this will be much cheaper. People I know who have done this have employed two carers working shifts and got them to cover sickness and holiday, although ideally you need agency numbers for emergency carers just in case. Then as OP has POA over money it is reasonable to set a weekly limit of money that the mum can spend and any large purchases have to be agreed with OP. That way the mum can still buy what she wants, but within a reasonable budget.

My parents had too much savings to qualify for free care, but where we are that doesn't mean that older adult' services or the NHS have no involvement. In Wales at least your mother would be entitled to a care needs assessment, even if they are self-funding. I know the legal rights are different in England, but not having access to independent care needs assessment from someone who won't stand to gain financially. It sounds as if she also needs proper occupational therapy assessment.

There are a lot of commercial organisations set up ostensibly to support older people, and some of their services and products are good. Unfortunately some of them seem to have no problem exploiting older people who have money and possibly a need for company as well as support. Your mother's carer is behaving very unprofessionally. I'm surprised you have let this situation develop however and that she has access to your mother's card. Does the agency not have a Code of Conduct in place?

Since you have active LPOA you need to be keeping a record of expenditure and are responsible for making sure that her finances are managed in her best interests. I think you need to tighten up financial arrangements and maybe imply to your mother and the carer that as her Attorney you could be in a lot of trouble if there aren't watertight systems in place.

OP, another way to go, would be to relinquish your power of attorney and have the Office of The Public Guardian appoint an independent guardian to look after DM’s affairs. This would absolve you of all responsibility in what sounds like a very difficult and frustrating situation. It would also give you peace of mind because an independent guardian has to keep account of all money spent on behalf of your DM and make sure it’s spent in the way that most benefits her, so would be able to rein in wasteful spending and set budgets. Every purchase made would have to be approved by them, so the carer wouldn’t have free rein any more to encourage profligacy. There’s a fee for the services - I think it’s around £2k a year, but it sounds as though it would still save money and it would take the strain off you.

One of symptoms of dementia is loss of inhibitions. Happens quite early on
that’s why it’s wise to set up a LPOA before you get dementia ! It’s not always just about lack of memory , it’s about loosing the ability to make sound judgements in the way you could before becoming ill; balancing a 5 min “want” with a future “need”
care is expensive. At £2k a week for this carer, she’ll soon be running dry of funds if she lives for 10 years, and then she’ll be in whatever nursing home the local council deem fit for her needs.
i visited a lot of care homes for my dad with dementia- some are shite, some didn’t suit him (culture such as what music is blaring away, what activities they do, plays a big part). Dad pays £1000 a week for being there, but he is also partly funded by local authority due to his needs and being previously sectioned. If he didn’t have those savings the only other local care home that could take him with his need for DoLs , is pretty awful .
money means choices at that age. But choices on big decisions , not being frazzled away on excess cashmere

id also add dad spends a small fortune now on underwear and trousers - elasticated ones. But that’s cos he’s incontinent and we have to regularly throw out. He also seems to go through endless glasses and razors. Breaking them is standard.

OPs mum needs the attorneys she appoint3d to be able to make the informed decision in her best, longer term interest. It’s sweet FA to do with being sniffy. Anyone who’s had a parent with dementia and in care homes knows money starts to go very very quickly, and bloody hell, having it to draw on then can make a huge difference to an already shit quality of life.

This is great advice.

Spot on. Legal capacity isn’t straightforward and even when someone has been deemed to have lost the capacity to make decisions for themselves, the mental health act says they have to be assisted to participate in decisions as far as possible - even to the point of delaying things if they are more capable at certain times of the day than others. Dementia can affect many areas of capacity, and just because the condition renders them incapable in some areas, it shouldn’t be assumed that incapacity applies overall.

This is hugely expensive. There are annual charges. And it makes life difficult for all the small spends needed whilst she can stay at home
even the OfG will tell you you ONLY do this if really really needed as a last resort
it is why they bought in LPOA - so people could appoint attorneys they wanted and trusted before they got too ill to make that decision. Under the old rules of enduring POA, people were often not getting the EPOA and then had to apply to OfG to get a court appointed one instead.

the OP Mum knew she wanted her children to act for her. dementia makes people suspicious and paranoid as well , so this is stand response from her mum to “blame” kids for “denying her”. They have to ride this storm out, know that their mum, in better times, trusted them to do right thing, and simply refuse

and speak to carer who is being majorly unprofessional in encouraging someone with dementia to act even more unihibited wrt money . HugEly and massively a red flag for a carer for a dementia sufferer. They should be distracting her, avoiding situations where mum may want to spend, not colluding.

In the case of vascular dementia in particular, the disease can be made a lot worse by moving the person out of their home environment and hence, their comfort zone. My mum is in her 90’s with vascular dementia. She was recently admitted to hospital and within a few days her confusion was so bad that she didn’t recognise us, even though she lives with us and has done so for over 20 years. It got to the point where full time care was being suggested by the hospital social worker but I decided to take her home for a while to see how things went. Within a few days she’d settled down and was back to her old self.

Our dementia adviser, linked to our GP surgery advised that dementia patients become agitated with major change - in mum’s case it was made much worse by the fact that she was used to a quiet home environment and she was placed on a geriatric ward which was noisy and quite chaotic at times.

I'm wondering where Op's mum even got the idea for the chair to ask the carer to set something up?

If the carer is through an agency then is their contract with them & not Op?

All of this would be likely to be deemed as curtailing DM’s freedom and as such would be breaching her human rights. Having an LPA doesn’t confer the attorney with the right to make decisions on behalf of the donor without their agreement if they are in any way able to participate in decisions about their care. The decision shouldn’t be based on what the attorney thinks the donor may have wanted when they were younger - they have a responsibility to do their best to act in accordance with what they want now.

Have you ever actually had the responsibility of caring for/ organising care for someone with dementia? As others here have said, while someone can look as if they're just about coping okay, they can in fact be much more badly affected than anyone would know.

OP, if in doubt, get an independent social worker to assess your mother. It's what I did with my aunt. Age UK may be able to point you in the right direction. My aunt's neighbour and another of our relatives told me she was fine coping on her own. A friend of hers was concerned that she wasn't. I wasn't sure. I asked my aunt whether she felt it might help to have an assessment. She said yes. Then no. Then yes. Then no. I doubtless 'breached her human rights' by asking the social worker to visit: I introduced them on the day and my aunt liked her and wanted her to stay and talk. I left them to it. Apparently my aunt kept the mask up — that everything she was fine and she was coping well — for about 20 minutes. In the social worker's report (she visited on several occasions before producing a report) she reported that my aunt had periods of severe confusion and was fearful and distressed and recommended that she needed a far higher level of care than she was receiving, which would mean a care home.

If you start pushing this human rights malarkey then no one in their right mind will be willing to take on the responsibilities of a POA.

It depends on the type of dementia, and often it's not an exact science but the psychiatrist's best guess. My mother was first diagnosed 15yrs ago. Several of her contemporaries who were diagnosed later deteriorated much faster, but many older people live with dementia for many years if they are otherwise in good health.

@Rosscameasdoody that is interesting. My dad had vascular dementia and if you saw him in his own home as a visitor you would not have noticed. He and my mum had a daily routine and whilst in it he seemed fairly normal. But when he too was admitted to hospital he seemed suddenly like someone with quite severe dementia. He just could not cope and seemed bewildered by everything. It was a real shock.

I'm not suggesting that anything is done against @Valleyofthedollymix DM wishes. I'm just suggesting that it might be worth looking what's about and what in home services they offer. Then and seeing if DM is interested. I understand about legal capacity and I'm not suggested she be deprived of choice but it's worth knowing the options. Honestly, in my experience dementia only gets worse.

My nan stopped working and then BAM suddenly she's a whole different person.

A side effect of dementia is over spending and this can get out of control very fast.

@Abeona I agree, going on about 'human rights' is all very well but 'capacity' can lead to people with dementia getting very unwell and unsafe. My mother refused to engage with dementia assessments and flatly refused to go into a home,

Then she nearly burnt her flat down by leaving something cooking in a frying pan whilst she went to see a neighbour. That got the assessments finally done and even her GP who saw her frequently (hypochondria) was surprised at how far gone she really was. She was a master of the coverup.

In the end sibling lied to her and told her she was going to a medical appointment, then that she had to wait to go home as her flat was being redecorated. The manager of the home played along and mum settled in quite well. She did twig a few weeks later and shouted a my sibling that she'd been 'dumped in a home'. I don't care if it was slightly unethical, it was necessary. She put on weight (she was seriously underweight when she went in) and was less confused due to better hydration.

OP hope you sort it all out. It's a horrible responsibility.

And NB: she could last a very long time so you right to be careful with the money. In hindsight, Mum was getting symptoms for at least 5 years before the penny dropped with us what was happening. Then it took 5 years of slow decline before she was admitted to a home and another 7 before she died at nearly 88.