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.

Absolutely!

It’s such a shame that people think it’s all about inheritance. Money means nothing when you watch your mum deteriorate and your father heart broken.
I insisted my mum looked her best in good quality clothes as she had loved dressing up, long after her diagnosis of dementia, the family bought her nice things which were easy for her to wear and in colours she loved
When my mum died and we had to downsize her home.
We found she had bought several cardigans jumpers the same and forget she had bought them.
My dad didn’t buy soap or cleaning things for ten years she had stashed so much.
I used to say are you sure you want this don’t you have it and she would argue she didn’t. Hopefully POA is in place.
After witnessing this my husband and myself made a death folder with everything financial, will NI numbers funeral plans and made sure they know where everything is. We were in our early 50’s.

A friend had a similar quote for a riser chair, then her daughter found a brand new one for £500. It does the job just as well. Her daughter is a physio so knew where to look.

A Riser recliner chair has to fit properly otherwise it's uncomfortable and doesn't work properly, my father needed a large sized one, my mother a small one ( when I was at the specialist chair place which had all sorts of different makes and sizes, I was standard)
So yes she needs the right size but best to go for an independent company which has lots of different makes which will probably able to find one that fits and if she wants can get it in a particular fabric. There are more important things to consider to make life easier, for example knobbly wooden ends to the arms are better for those with arthritic hands than big fabric ends
It will be dear but probably not that dear and it could be a lot less
Is the carer the same size as mum? Lovely to have all those cashmere jumpers that she will not wear much. My mum loved hers but actually just wore her existing ones she has bought over the years, she did like the occasional new one, they are good as they are warm and soft but no one needs that many. Could it be that mum just likes to open the parcels and admire the new jumper. Would she get the same.pleasure if existing ones were wrapped up a d opened. Just trying to think what it is about getting new ones that she loves, not trying to decieve

Ha the @PanettonePudding remark about 'Have you got POA' being the new "cancel the cheque" made me proper laugh, so thank you for that.

And thanks again for all the suggestions and thoughts.

I'm going to go next week and take my mother out (not in a mafia type way, in a visit the garden centre way) so that I can talk to her away from the carer. I'm going to work hard at conveying that it's not about the money, per se, it's about her best interests. The OT has recommended a company for chairs very near where she lives. I spoke to the chair head office and they explained that the deluxe version has the special lumber technology used in high-end sports cars. Or something. Hopefully the OT will be able to tell us whether or not this is necessary, should a chair be the right choice.

Our POA is not only financial its welfare too. So you act in the persons best interest with health decisions too. Good luck to you and mum

Re cashmere jumpers - quite apart from the whole loss of inhibition, compulsiveness angle - she may well have forgotten the previous ones, and lost track of how many she has, but kept the “I need a jumper” message in her head. My dad once got 3 haircuts in one week!

Another factor is my father will tell you he doesn’t have any clothes because he can’t see them, and doesn’t think to open his cupboard and drawers.

Also so worth getting a leather recliner. My aunt had a fabric one of her choice and ended up with double incontinence and endless waterproof mats that moved about. Even just dropping her tea was a pia.

With recliners if you’re likely to get a few years out of them they’re really worth it.

OP when you go next week, may I suggest a surprise visit? It will give you a much better idea of what is really going on there.

This resonated with me Mirabai. My mum’s in the advanced stages of dementia and the clothing ‘message’ is clearly stuck in her head because she recently became obsessed with taking every item of clothing out of the wardrobes and leaving them out all over the bedroom. Eventually it was happening every day so I had to remove everything from her room, just leaving everyday casual clothes she wears indoors. Now even these have had to be taken out of her reach because she was emptying the drawers and putting all the clothes in her bed !!

When I asked her if she knew why, she said she needed to know where they were. Our dementia nurse once told me that she thinks the condition is so hard for relatives to deal with because it’s impossible to get inside the mindset of someone who has it, so very hard to understand why they do the things they do.

This reply from me is not helpful, but ruefully humorous. My late mother was looked after by visiting carers (4 times a day) after a fall. She already had a lot of lovely cashmere jumpers — that the carers, bless them, shoved in the washing machine. A fascinating result.
Before my mother moved into a care home, she and I had a lovely time buying new ones and unpacking them. It did feel like Christmas. And I had an arrangement with the home that I would take them and wash by hand when necessary!

Ooo look on Facebook marketplace place loads there. We got an excellent top quality one for 125£ it was riser recliner
or Vinted e bay .

riser recliners from the tv are ridiculously expensive

As our ageing population gets older and older this is becoming more and more of an issue for the children. My Living parent is over 90, other one passed at nearly 90 in terrible health. He was in a care home self funding. He couldnt see properly, he was in a wheelchair, unable to take himself to the toilet and often rolled out of bed and was found on the floor when the checks were done. That and jamming himself between the wall and the bed.

Everytime he was taken to hospital everything was thrown at him to get him back to the care home. He didnt want to be here. He had stated he wanted to commit suicide but his Catholic faith stopped him.

So on we went...someone made an awful lot of money out of my Father as he was in care home for nearly 4 years. Care home went from Good to Inadequate in that time. It was a horrible time for him but I am sure someone is patting themselves on the back saying 'isnt it great, people are living SO much longer'.

Other parent was in hospital recently and their ward was full of women just screaming out, soiling the beds and refusing to be changed.

I really dont know what the answer is but endless buying of clothes/stuff and in the next 30 minutes forgetting what they have brought is not the answer. The money will eventually run out and then what?

@Tracker1234 Completely agree with you.
People who live a long and active and healthy life are completely different to those who are unhappy like your poor Dad.
Dementia is such a cruel condition.
Some people seem to hallucinate, it’s almost like they are on so me sort of drug trip, seeing and hearing things that aren’t there.

An old lady near us wore about six layers of hot cardigans and jumpers on a boiling hot day, and had locked herself out and was shouting and banging on windows asking to be let in.

The house was empty.

I got help for her, but she was frightened of me and other neighbours whom she used to know prior to developing dementia.

She had to be placed in a care home after that, poor woman.

@NewFriendlyLadybird yes carers did that to a lovely new woollen jumper I got Mum, I sent it to the charity shop with a note that it was not the size on the label. Mum didn't have dementia so was able to protect her food cashmere jumpers, her cleaner helped was those. I still have them, too small for me as Mum was tiny I can't wear them, one favourite one she had had 20 years. It really was an 'investment'.

A great idea, it can have a blanket on if need be.

You have probably hit the nail on the head. OP's mum probably needs a carer who can see what is behind the requests, it might sound good that she does exactly what she says but that is probably not what she means, and it is probably not the thrill of unwrapping the parcel per se but needing to know she has enough nice warm jumpers or whatever.

This sounds like a good idea but it actually wouldn't be helpful because by the time such a book was published the information in it would likely be out of date.

One of the problems with trying to navigate the caring system is the lack of continuity, the ever changing landscape and the postcode lottery of it all. Each council has its own rules for social work adaptation assistance for example - a postcode lottery. Each tax year brings government changes to the benefit and funding system causing personal financial problems and statutory cash flow problems affecting services - an ever changing landscape.

The basics of dealing with a situation like OP's are trying to get access to professional help as quickly and clearly as possible whilst avoiding dead ends and vultures. This is hard to do as a job let alone as a relative caught up in the impact of getting and processing diagnosis and the grief that comes with it. I don't think a book would cause anything but frustration at that point, maybe even just make the anger at the unfairness of it all worse!

Over time I have found repeatedly the best place to get immediate support and advice is local grass roots carer support. This tends to come from charities staffed by volunteers who have been there and done that. Like a lot of red tape, progress is made by who you know not what you know and that needs local knowledge - being put in touch with the right people to kick off whatever process will get carers to the outcome needed. It isn't always obvious what help is available and how much is expected of family and how much (like specialist seating) may already be available but needs a certain referral for example. Each council and each NHS area will have its own convoluted system for getting there which they think is the best most obvious route but if you aren't plugged into the system it is invisible! Citizens advice very much has its place with the legal and financial advice but the carer support network is the place to find out which pathways work locally.

NHS/social work OTs and physios are usually front and centre when it comes to guidance for equipment and managing disability symptoms but it is a postcode lottery again as to how long the list is to be seen and how helpful that is. No sales rep ever should sell disability equipment without OT or physio input and if funding is sought there will be a requirement to do so, this is because (as pointed out lots on this thread) it is dangerous to use the wrong equipment and well meaning mistakes can be very damaging. There are usually lots of good systems in place, the trick is getting access to them in time and with professional advice.

@Valleyofthedollymix I am sorry your thread has become a bit derailed, and that there is a bit of meanness from people not reading your posts properly. I pm'd you in case but I have to say you sound like you are really tackling your DM's care head on and proactively getting everything she needs in place and I really admire that. People underestimate the amount of chasing that needs done by unpaid carers just to cover the basics and add to that juggling family life, work and all the emotional upheaval you are going through and you deserve a massive pat on the back.

Some NHS areas have a disability equipment centre where you can go and try out lots of different seating options etc and also look at possible kit that can help around the house. It would be worth asking the OT if you can organise an appointment for your DM to visit somewhere like that - because it as not a shop and is staffed by OT there would be practical and useful advice instead of a hard sell. It can give you both really good ideas of what is available and what is worth spending money on etc. You can probably get some equipment to trial at home too before looking at buying something that may not be used much in the long run.

If there is no physio involvement yet I would investigate and even if it isn't an ongoing service she can have just now (some areas don't do much geriatric physio outside of injury repair) there may be recommendation of classes/activities locally that know their stuff and can help your DM maintain the mobility she has and hopefully have some social life and fun too. Examples near me are dementia specific music groups/ coffee mornings, sitting dance/exercise classes, various art activities etc - there is a lot of dementia/alzheimer support activity groups run by council/theatres/art galleries/ community centres etc geared towards getting people out of the house and active with their carers. It may also be a way of finding out if symptoms that may be changing personality a bit might also bring new interests that wouldn't have been welcomed in the past. Relaxed theatre showings are very welcoming and music can be extremely therapeutic for neurodegenerative symptoms.

Could you get her an open wardrobe? They even have easy lightweight pole systems that you just twist/fasten to install (no nails or anything) or even just racks.

I obviously don't have dementia – though have dealt with relatives with it so know how painful and bewildering it can get – but have somewhat poor executive functioning and memory, and having open shelving for everything including wardrobes is useful and comforting to me.

@noped - belatedly saw your messages and have responded with teary gratitude. Here I wanted to bold up what you've said above:

People underestimate the amount of chasing that needs done by unpaid carers just to cover the basics and add to that juggling family life, work and all the emotional upheaval you are going through and you deserve a massive pat on the back.

Not the bit about me deserving a pat on the back! But the bit about how bloody long everything takes to organise. I'm not doing the day-to-day care, and I recognise how privileged I am, but everything else is a time quagmire and I never seem to have anything to show for it. When my siblings and I assured my mother that we'd carry on looking after her when Dad died, she said sniffily, 'well you visit occasionally' and I realised that she has absolutely no idea of the weeks and weeks that my brother spent organising their finances or the similar amount of time I spend chasing up appointments, organising the care, dealing with the agency, getting the plumber round etc, etc.

It's unseen because it's a) mostly done by women b) not renumerated so not valued by a capitalist society c) incredibly boring so nobody wants to talk about it.

I found the whole administration of ‘care’ tends to be underestimated. My dad lived at home after my mum died and although he didn’t need carers I had to manage his finances, medical and other appointments, sort out any maintenance/repairs to his house all while working.

It's unseen because it's a) mostly done by women b) not renumerated so not valued by a capitalist society c) incredibly boring so nobody wants to talk about it.

Spot on….

You say you spend hours organising carers but there's only the one (?)
Take the card off the carer, check her resume, qualifications, and raise your concerns with the agency.
You said she wanted to go into a home but you let it mushroom ... tbh, her money to spend how she wishes, but it does sound like the carer is taking the piss. Can you specify that all items are receipted?

It's an agency carer. You can terminate the contract whenevr you want. For example if a relative moved in, or if the OP's mum moved to a care home. If the agancy dismisses them, that's their problem.

I don’t know about cost but when I was in healthcare we had to take yearly courses on financial abuse safeguarding of clients so I find it very concerning to read this, particularly because you say your DM has dementia.
plus 6 cashmere the same? Is the carer the same size. I recall there is a totally anonymous and confidential organisation set up to investigate anything and everything concerning someone as suspicious. The organisation was totally autonomous even to government a bit like the FSA.
I haven’t worked in Healthcare for a few years but I see from my search HSSIB keeps coming up (started apparently in 2017), it may have taken this roll now. Try giving them a google and see what you think.

From a legal point of view it is far wiser to speak with a lawyer now and ask two things, what can be put in place if your mother agrees before dementia sets in (I seem to recall there are a couple of options depending on what’s most appropriate, and secondly if one of these can be set in place but not take effect until such time as client’s dementia reaches a place where it is deemed necessary - something very useful if DM doesn’t want to give over financial control but wants to feel in control of her future.

The most important thing is dealing with this Healthcarers professionalism via a totally independent body and not by complaining to her/his employer.

The other important thing is to understand how important it will be to DM to be seen as an individual respected and supported to make decisions that do not take away her rights over her own finances. This can be done. There are workshops run for people wishing to know more about dementia (check - they may cover clients/individual living with dementia’s legal options, on top of the perspective of what the individual may be struggling to come to terms with and how best to support in these cases). Even with my previous work with individuals living with dementia I would still sign myself up to one of these courses if supporting someone close was something I later found myself dealing with. But everyone is different and these are all just suggestions, hopefully useful.

Dementia is an incredibly complex, complicated and at times difficult condition to navigate for all involved and my heart goes out to both you and your DM.