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’ve noticed similar with my mum. She has advanced dementia which has affected the appetite controlling part of her brain, so she no longer gets hunger signals. Generally, if she wasn’t presented with food, she simply wouldn’t eat. The only food she actively seeks is sweet and she has gone from a lifetime of not taking sugar in her tea/coffee, to wanting a couple of spoonfuls. I associated it with the need for energy rather than actually wanting to eat and your explanation makes sense.

Inability to run your own bank accounts, deal with your bank, manage funds, does suggest a lack of capacity and if you are at all concerned you can have the person formally assessed by a relevant professional. LPA for financial affairs is to give the person authority to make, or to help the donor make, decisions about money, deal with bank accounts etc etc.

And that’s what the mental health act recommends because assessment of capacity is outside the scope of the attorney. The authority conferred by the LPA depends on what is specified by the donor at the time the LPA is drawn up. If it’s for use as soon as it’s registered then the attorney assist with decision making whenever necessary but if it’s only to be used after the donor has lost the capacity to make their own decisions it’s more difficult, because the legal definition of capacity is complicated and the law states that attorneys are still required to ensure that the donor is involved in the process within the limits of their understanding.

You may not have capacity to tun your own accounts, but do have capacity to say where you should live, or what clothes you want to buy.

I would be speaking to a lawyer about getting power of attorney for finance. It doesn’t sound like she has full capcity to be making these decisions. Also sounds like the carer has too much influence and I’d be worried about financial abuse.

OP says she has PoA in place and her mother has lost capacity to use her bank card or deal with the bank. To get authorised to deal with her mother’s accounts banks will have required her to send them the PoA documents. So I assume the former in this case.

https://www.hslchairs.com/chairs/riser-recliners

I found this.

@Valleyofthedollymix I would HIGHLY recommend this company if you want a riser recliner

https://stuartmobility.co.uk/riser-recliners/

I recently bought one from them for an elderly relative. It's a British family owned company. They come to your home with an actual chair to test and measure you and fit you properly. You do need to be measured so it fits properly and avoids pressure sores etc.

MASSIVE choice of fabrics and much cheaper than £4k

It was one of those experiences that restores your faith in customer service.

It's clear that you are kind OP & it sounds like you are tying yourself up in knots to do the best for your DM but it's not always about what she wants.

Maybe consider what would make things the easiest for you as it's likely that you are never going to please her OP - largely due to her dementia - so perhaps it's time to put yourself first.

There is surely a middle ground here ...if an NHS OT is going to be several weeks or months away then arrange a private OT to carry out an independent home assessment.

This can be organised very quickly and will ensure OP's Mum and house is assessed appropriately and recommendations made. It sounds like there is plenty money there for this, why should the OP's mum be hanging around needlessly?

There's a very quick trend to demonise this carer who is apparently pilfering cashmere jumpers and all sorts according to people on this thread. But she is the one with day to day care and experience of OP's mums needs, as acknowledged by OP herself.

Get an independent 3rd party assessment, but there is no need to hang around waiting for an NHS job when it sounds like there is plenty to cash to move quickly on adaptations that will be best now and in the future.

Make sure all parties are present for this and have access to the final report.

I can only imagine some posters on this thread in the same position themselves in 20/30/40 years time, being told by their own children what they can buy with their own money and how they can not have their preferred carer as their kids disagree.

OP clearly stated in opening post, mobility is a concern more than cognition.

We had to manage grandmothers diet carefully once she got dementia as she would only eat biscuits, sweets, puddings if they were on the house and no other food.

The carer would prepare the food and keep dessert on her car for lunch and dinner so grandmother ate a proper meal.

It's hard

As a POA the financial decisions have to be in the best interest of the person. Even if the mum believed in living very frugally to preserve the inheritance for her children, that can't be the guiding principle behind the choices the POA makes. It all has to be about the persons welfare both short term and in the longer term. In the same way even if she had a strict diet all her life but now wants to eat unhealthy treats this should be allowed to an extent, but not so much it could make her uncomfortable or gain so much weight it would affect her quality of life.

My grandmother ate very healthily all her life, very minimal sugar. In her later years she had some physical problems but she did not suffer from dementia and was able to make informed decisions. She chose to eat more sugary foods because she had very little sense of taste and sweet foods were the only thing she really enjoyed. As she could no longer do a lot of her former activities she didn't want to deprive herself of the little treats she could still enjoy. But she was still able to make wise choices and enjoy these things in moderation, so she did not get any ill effects.

You can't base your decisions on what she would have done when she was well, as you don't know if she would now decide differently based on her circumstances. She needs to be comfortable, while at the same time avoiding as many of the ill effects of making poor decisions due to her condition.

As a wealthy woman she can afford some luxuries without impacting her future well being, if she wants quite a lot of good quality clothes and furniture then she should have it. At some point there needs to be a bit of good sense applied to the spending though so that in the long term she can continue to have a comfortable lifestyle and the best care.

The carer should be working with you to achieve a balance of keeping your mum happy without overspending or overeating all the time. As pp have said there are ways of doing this without making her feel restricted.

OP, have you got LPA for property and finance AND health and welfare? Often people only have the first. If you don't have the second you are not entitled to make any decisions about the person's care, that will require a mental capacity assessment, and best interests decision.

Very elderly people do tend to lose their hunger through inactivity and just focus on what tastes lovely. DFIL in his latter years preferred to consume his calories quickly as pudding; so did DMIL. After dementia is diagnosed, I am not sure it matters much as there's no cure for getting old. Once the will to pursue life and look after the garden has expired, it's the long road out. Bleak, I know, but my experience.

'If her mum still has the capacity to contribute to decisions about her care, then OP can’t disregard her wishes or act independently of them.'

This is exactly why multi disciplinary reviews are necessary, it really helps to ensure that everyone is acting in the persons best interests, that they're in the right placement, and they can make their views known too if they have capacity and any HCPs present will know exactly how much weight to give that. One person really can't do this on their own and SS can be really helpful when navigating elder care.

I've not read the whole thread but we were offered a chair for my mum via the local council OT. Sadly, her decline was so rapid that she didn't get to use it but I'd suggest that as your first port of call.

@Valleyofthedollymix I'm late to this thread and you've had some great advice. Also WELL DONE on getting the bit between your teeth and getting on with it today - sounds like you had a very productive day.

Just adding in my experiences...

My dm (and df) had made to measure electric rise/recline chairs. They cost £3k about 15 years ago (which was more than the house they lived in cost when they bought it in the 1950s!!). dm had Parkinsons but at that time was still mobile and could manage stairs. However, they both got excellent use out of their chairs for the next 5-6 years. They could relax with their feet up while watching TV, as they got more infirm it meant thay could nap in comfort during the day, and getting up to go to the (downstairs) loo was still possible even when dm was very frail. I'm glad dm got hers while her memory was OK, it meant that later on in life she knew how to use it (muscle memory when her brain memory was shot).

My dMIL had one that was not made-to-measure. It still cost over £2k, a couple of years ago. We now have it in our garage and find anyone who wants it, let alone anyone willing to pay a few quid for it. (we're about to donate it to a local day centre charity).

Good idea to look at alternatives for your dm's carer. My PILs had live in care for a period and it was so worth it for all of the family's peace of mind - especially if your dm has dementia. Having someone to regulate their time: "now it's time to get up / eat breakfast / have your dinner / go to bed" That is so important, particularly as her dementia progresses.

@Valleyofthedollymix I'd have been telling the agency just how much she was whinging about them to you. Not professional. I'd also look into if this behaviour by the carer comes under financial abuse. Your mother is vulnerable and is obviously spending the majority of her time with the carers. Does she have a social worker? Also direct payment arrangements have some sort of oversight as I've talked to other carers that do this sort of work. It protects both sides.

Great that the OT is now involved, everything does take ages but I can't believe that a salesman was arranged before talking to family first. I'd definitely get new carers/agency in as it sounds like their relationship is too cosy and has transcended a professional level/distance between them.
Good luck with it all.

@asrarpolar

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.

This is completely the wrong perspective and I'm very surprised if your father had dementia that you don't know this. It's not that dementia is masked when they are in their own home, it is that they are better in their own home and where their routines are AND moving them tends to accelerate decline if late stage. Routine and familiarity enables people with dementia to continue to have a good quality of life.

Moving someone to a new environment, especially if they have lived there in their own home for decades, is one of the worse things you can do - because the shock of a new unfamiliar environment will accelerate their decline.

A simple example might be they know where their bed is and can orientate themself there. If they are mobile, they will know where the lavatory is and how to get there so this can continue to facilitate continence. Or if they aren't mobile, they take comfort in their own bedroom and the familiar view out of the window.

Moving to a care home or a new place will totally disorientate someone with dementia. An inability to learn new information or a new routine might mean that someone can't remember where the lavatory is now, can't get there in time so end up in pads and incontinent because that's the only way staffing levels in homes allow it to be managed.

Sadly (not addressing this to anyone specifically just a general observation) lots of people turn a blind eye to this because they don't want to deal with the huge challenges (and costs) that go with trying to keep someone with advanced dementia in their own home safely.

Sadly (not addressing this to anyone specifically just a general observation) lots of people turn a blind eye to this because they don't want to deal with the huge challenges (and costs) that go with trying to keep someone with advanced dementia in their own home safely

It is simply not possible to care for most severely demented people in their own homes. The health of the daughter who has to deal with this will deteriorate massively, and the caring burden causes her life expectancy to be reduced.

@comeagainx you think someone's dementia can massively deteriorate in just 24 hours? My father was moved out of his home first to hospital after a fall and then care home when it became clear he could not return home. No private money here and he needed more than 4 care visits a day.

@Noped

would you consider writing a book about this phase of life and how family members can prepare to support their (more often than not) parents through it well?

as my parents get to their late 70s I’m starting to think about this. Thankfully they are both still fit and active now. But seeing one of the PIL have a sudden life event which means they have suddenly shifted into a physical disability from which they won’t fully recover makes me realise how things from now on can change anytime and when it does it can be rapid and significant.

But compared to say having a baby or young child where there are endless books you can read, there’s very little on this.

and I can bet once you’ve lived through it you’re and expert but by then it’s too late to go back and do it better.

@comeagainx

I used to think that until we had to move my aunt into a care home. She chirped up no end and I regret not moving her earlier - we had stuck to the received wisdom to keep her at home as long as possible. She wasn’t even attached to any of her objects from home other her photos of her family and her dogs. I don’t think she could even remember it at that point. She remembered her childhood home though, as many dementia patients have better memory of earlier years.

Past a certain stage in dementia - there is no orientation in terms of bed, my bathroom etc - everything is random. My father has no idea where the kitchen is he has to be told every day.

I have concluded that it’s a shock for old people to move from a long time home if they’re compos mentis. It’s difficult to generalise because every case is different but past a certain stage with dementia they don’t even know where they are.

I agree. It’s very very difficult.

I’m very glad to see you’ve had some success already in making changes and getting appropriate care for your Mum. I appreciate that things differ area to area, but when my DF was in decline, I found that OT via the Local Authority was actually one of the most ‘on-it’ of all the agencies so hopefully that will all happen quickly for you.

As for your mother’s dementia, I’d say you’re wise to try to cut down on unnecessary spending - a close friend of my DM was diagnosed with dementia two years ago and she and her family muddled on for a while with everyone managing, until suddenly she deteriorated very quickly (though still quite physically healthy). Finding a place in a good care home has been challenging because there are only so many beds available for people with dementia, and she’s spent most of the past year in hospital due to difficulty finding her a place and then multiple falls in the home. There will come a time when she needs money thrown at her as your father did, but it seems you haven’t reached that point yet, and the carer may even be enabling a deterioration in your mother’s physical health by doing too much for her and allowing her to be over-indulgent with her diet!