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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Forced to live in one room?

39 replies

SausageMonkey2 · 14/05/2024 23:49

AIBU that this is a shocking situation in 21st century Britain.

So my mum just had an above the knee leg amputation so is in a wheelchair.

When she went into hospital she had full use of both of her legs, could climb stairs, hang out washing etc etc.

Now she is in a position where she is fit enough to leave hospital as she no longer needs “medical” care but she needs help with personal care / has no downstairs washing or toileting facilities (or bedroom).

Her doors are too narrow to get through in her chair. But she isn’t ambulatory at all.

She will be brought home by ambulance and the fire brigade notified.

She will have to use a commode in the one room she will be put in - with no ability to empty it herself. The same room as she will eat, sleep and live in.

Because she gets more than £280 a week in pensions she has to fund it all herself - but essentially is willing to be wiped out savings wise (plus an extra £10k from us) to get alterations done so she can stay at home (she’s only 69 and there’s nothing wrong with her apart from she’s missing 3/4 of her leg).

OT (the third one we will have seen) can “come and assess for minor adaptations once she’s home” but she’s not willing to go
home if it means eating / pooing / sleeping in the one space.

AIBU that this is an affront to
dignity and respect in this day and age.

OP posts:
keffie12 · 15/05/2024 00:10

It is wrong. Also, I don't know if you know anout it, but look up Attendance Allowance, which she is entitled too which will give her an extra £440 per every 4 weeks.

It isn't means tested, and it will help her way of life.

It's an awful kept secret in this country. It's basically the pensioners equivalent of PIP/DLA for working age people.

If you will struggle with the form, get Age U.K to fill it in and send evidence in like discharge letters, etc, with it. She is most certainly entitled

The name of the form and questions are very old-fashioned as they have never been updated since their introduction in 1972.

It's something in my volunteering activist work we will be looking to get updated.

It's underclaimed because of the name, for starters. We would like it updating to something like Seniors PIP

Here's the link and no below to get the form

0800 731 0122

www.gov.uk/attendance-allowance/how-to-claim

Miley1967 · 15/05/2024 00:20

Unfortunately a lot of people have to live in this situation until adaptions can be made or things improve ( prosthetic limb etc ) which can take time.
As pp says - look at getting a disability benefit in place asap, although the criteria for claiming is that the claimant does have to have had difficulties with personal care for six months or more, so depending when your mum starting having difficulties she may not qualify yet. Also OT should be able to advise on disability facilities grants that may be available to her but adaptions done through the local authority often take a long time due to demand far outstripping funds etc.
Ask Age Uk for a full benefit check. If AA is awarded then that does increase the likelihood of her also qualifying for means tested benefits like pension credit and council tax support.

StormingNorman · 15/05/2024 00:33

This is awful. Is there a temporary alternative while the adaptions are made to her property?

RookieMa · 15/05/2024 00:37

Make sure she learns quickly how to transfer using the banana board and to reposition herself regularly so she doesn't get wounds like ulcers that then need further care

RookieMa · 15/05/2024 00:38

She'll need get someone to remove the doorframes so she can get around

Ponderingwindow · 15/05/2024 00:45

Would it be cheaper to move her to a more suitable housing situation? Someplace that won’t require remodeling? Someplace with a wheelchair accessible bathroom on the main floor? Even if you have to do it in two stages, rent a flat to start and then move her somewhere permanent once you find the right place and sell her home?

JustPleachy · 15/05/2024 00:48

I am not sure what your AIBU is. Is it that she will need to be home before the alterations can be done, but you feel they should be done before she is discharged?

It sounds like a very difficult situation for her, and I hope that you are able to get the alterations done quickly so she is able to adapt better.

BruFord · 15/05/2024 00:50

I agree with PP’s about applying for Attendance Allowance, Age UK was v. helpful when my Dad applied for it.

Are you saying that you want her to go into a rehabilitation/convalescent-type facility for a while and/or have carers at home? Again, Age UK can be very helpful and Adult Social Care in your area.

WhatAreYouOnAbout · 15/05/2024 07:14

They are going to bring her home in an ambulance with assistance from the fire brigade to get her into a place she can’t get out of? What if there was an emergency and she needed to get out quick?

UneTasse · 15/05/2024 07:21

The immediate solution does sound awful, but presumably she now intends to move house, right? Does she own or rent? Sounds like owning, from what you said. I’d be prioritising getting her home on the market and buying something more appropriate. She is very young and could easily be living in her own home for another 20 years, so it should be appropriate for her needs.

she has had a very traumatic operation, but she is young and has some resources and your support to improve this situation. I can imagine that she will do her best to argue for staying where she is, but it doesn’t sound comfortable or appropriate at all.

ThreePointOneFourOneFiveNine · 15/05/2024 07:26

Yes it's disgraceful, but not uncommon I'm afraid.

On a more practical note, why is she not ambulatory at all? Is there a reason she can't use crutches? Would getting a stair lift be an option? I am aware this is massive adjustment to make and is overwhelming to start with. But I am a wheelchair user myself and also have a close family member who had a leg amputated. If her home has no downstairs toilet then she either needs to get one installed or move. She may be attached to her home, but there's no use being attached to a load of rooms she can't access I'm afraid.

I strongly recommend getting her some counselling. It's a hell of of a shock when it first happens, but life can and does go on. My amputee relative could still drive and swim. There is still life worth living, it just takes a while to see the way forward.

beetr00 · 15/05/2024 07:36

@SausageMonkey2 just to add, as well as attendance allowance (and if it is awarded), you could also claim for Carers allowance (if you give 35hrs p.w. care)

https://www.gov.uk/attendance-allowance/how-to-claim

https://www.gov.uk/carers-allowance/how-to-claim

ashiningbeaconinspace · 15/05/2024 07:50

Absolutely apply for attendance allowance BUT, don't apply online. Ring up and ask for the form to be sent. Fill out the physical form and send off. The reason for this is that if you apply online, the money will be paid from when the claim is approved but not backdated. If you ring up, the call is logged and when approved, the money is backdated to the day you called. Totally stupid situation but that's the way it works.

SausageMonkey2 · 15/05/2024 09:25

ThreePointOneFourOneFiveNine · 15/05/2024 07:26

Yes it's disgraceful, but not uncommon I'm afraid.

On a more practical note, why is she not ambulatory at all? Is there a reason she can't use crutches? Would getting a stair lift be an option? I am aware this is massive adjustment to make and is overwhelming to start with. But I am a wheelchair user myself and also have a close family member who had a leg amputated. If her home has no downstairs toilet then she either needs to get one installed or move. She may be attached to her home, but there's no use being attached to a load of rooms she can't access I'm afraid.

I strongly recommend getting her some counselling. It's a hell of of a shock when it first happens, but life can and does go on. My amputee relative could still drive and swim. There is still life worth living, it just takes a while to see the way forward.

She’s only ten days post-op so is working hard with physios to get on the go. She has been referred for a prosthesis but everything takes time. She has a garage that can be converted - it will use all her savings and ours (£20k in total) but cheaper than moving house (and realistically there aren’t many properties she could move straight into), and she has her neighbours around her.

OP posts:
SausageMonkey2 · 15/05/2024 09:28

beetr00 · 15/05/2024 07:36

@SausageMonkey2 just to add, as well as attendance allowance (and if it is awarded), you could also claim for Carers allowance (if you give 35hrs p.w. care)

https://www.gov.uk/attendance-allowance/how-to-claim

https://www.gov.uk/carers-allowance/how-to-claim

She doesn’t meet the 6 month rule for attendance allowance yet. We won’t get carers as everyone works. She has £14k in savings. They want her to both use it on a care home in the interim and pay for her own major adaptations. If she goes home into one room for two months whilst the work is being done her both mental and physical health will be compromised as she will have no ability to leave the one room. No garden access, no toilet, no cooking etc. There’s only so much you can safely cram into one room. We are asking for 8 weeks of support whilst her garage is converted (at our cost)

OP posts:
SausageMonkey2 · 15/05/2024 09:30

UneTasse · 15/05/2024 07:21

The immediate solution does sound awful, but presumably she now intends to move house, right? Does she own or rent? Sounds like owning, from what you said. I’d be prioritising getting her home on the market and buying something more appropriate. She is very young and could easily be living in her own home for another 20 years, so it should be appropriate for her needs.

she has had a very traumatic operation, but she is young and has some resources and your support to improve this situation. I can imagine that she will do her best to argue for staying where she is, but it doesn’t sound comfortable or appropriate at all.

We have a builder starting on 24th June to convert her garage into a bedroom and wetroom. We literally need 8 weeks support to get through to that point without compromising all the hard work she’s done so far.

OP posts:
Elleherd · 15/05/2024 09:30

A tip for further down the line, I'd ensure all adaptations such as removal of door frames etc, are done 'professionally' with receipts, (professionally can be an odd-job man as long as HMRC registered.) not by relatives or friends. My council decides on council tax disability reduction based not on the extent of disability, but the proven cost of home adaptations, even when they're very obviously there and needed. Receipts for materials don't count.
(It rewards the comfortably off and penalizes those on low incomes who can't wait years for council adaptations to happen.)

I'm afraid the experience she's having is quite standard. She is now bed blocking and will be shoved out if she continues. Being trapped in one room as a disabled person with everything happening in that space is normal. You either have the money to do something about it, or you fight your body for better mobility, or you stay there. It's normal.

As if you are severely disabled, is being trapped in a bed in one room with carers telling you to choose between having bodily functions attended to or eating. As a cleanliness freak I choose the former, and would be chucked a couple of bottles of Ensure three times a day, and they'd write that I'd been cleaned and had breakfast/dinner.
It went on until the effects landed me back in hospital seriously unwell, and the etymology uncovered. I was told I needed to look for someone who could claim carers allowance and basically exploit them.
There is also no right to refuse males coming in for some personal care needs such as catheter changes etc (well you can refuse, but you'll be left with a catheter that needs changing and can be blacklisted)

Really sorry for what's happened to your mum and understand you were expecting a better service, but I don't think you have any idea what 'an affront to dignity and respect in this day and age' truly is. Your mum is actually in a good position to be able to get better treatment than many, and she and you should have a rethink of her resources and how best to use them to provide her with the dignity and respect than having money can afford.
Her total immobility is temporary, though I understand how horrible loosing a limb is, and she will develop mobility if she works at it.

Octavia64 · 15/05/2024 09:35

Normal I'm afraid.

Wheelchair user myself.

The NHS will normally fund six weeks of carers coming in so I'm surprised she hasn't been offered that.

I came home couldn't mobilise at all and I crawled around my house and or DH carried me.

buffyslayer · 15/05/2024 09:36

WhatAreYouOnAbout · 15/05/2024 07:14

They are going to bring her home in an ambulance with assistance from the fire brigade to get her into a place she can’t get out of? What if there was an emergency and she needed to get out quick?

Edited

It's fairly normal
You have people who can't get out of bed that are home alone
Usually with carer visits and an emergency button

Truetoself · 15/05/2024 09:43

Was the above knee amputation an emergency? Or was it elective? If it was elective, perhaps some forward planning could have helped. Could she stay with you whilst the adaptations are done or until she is more mobile.

Thing is there is no medical need for her to be in hospital and she can go to a respite place but at her own cost .......

State should provide some help in this situation of course but family needs to rally round and also she may have to have less than ideal conditions for a while ....

Elleherd · 15/05/2024 11:19

I cross posted above when you updated. I get about one pot of money expected to cover too many things, but be warned, PIP and AA work that way also.

You get it, so expected to pay for many once NHS supplied medical items out of it, as well as getting to and from appointments, going to work, additional costs to run essential machines etc, servicing and insuring. PL for carers in your home, and every single extra expense incurred by disability, many times over with the same amount. It's all a nod to additional disability costs, that nowadays has to cover more than it can, as do all savings.
I'm afraid the possibility of all the work she's done to get where she is, going compromised from being in one room, is unlikely to bother the powers that be.

Your Mum's entitled to six weeks free 're-enablement' carers visits, regardless of her income, in that room. After that she has to pay. (watch out on week 7- often nothings said but the bill gets presented months later) Those shouldn't start in any home other than her own, so if she goes somewhere else, apply for them when she's going home. Those swift wash/eat visits are the supposed band aid against 'going downhill.' If she's lucky she may get home OT visits. (IME often promised but rarely materialize.)

Someone mentioned a banana board - definitely obtain one. It will be useful later as well. Disability as age sets in needs thinking about, beyond adaptations.

Re now: there are 'step down' hospitals for people inadvertently bed blocking. They are free. But go see yours before opting for it, or her simply being taken to it if she keeps refusing to leave. (have seen people wheeled off in their beds 'for tests' who were actually being transferred to Step Down.) They vary massively.

I'm told some are fine, just full of mainly elderly folk whose medical needs are now reduced, but need some care before they can get home, or a home be found. Have OT's etc on site, and caring and very keen to help and mobilize folk.

However mine reflects city life, so lots of elderly, interspersed with drug/ alcohol users who have been previously hospitalized for physical issues (including recent amputations) and are mainly headed back to the streets. They have OT's etc, but a lot of their services center around controlling addiction etc.
It can be a scary place, but people bed blocking intentionally or otherwise, are seen as 'beggars' and beggars can't be choosers, and all that.

Getting a carer when family work: - someone with long term MH or personal difficulties can fulfill the role if the person needing help knows what they want and how it should be done, and can manage the carers needs. Very daunting for someone at the beginning of dealing with it all, but a possibility if family is around as well?

My current carer's a lovely young woman, sanctioned by UC for being unable to cope. Struggles with daily living and her emotions, and needs considerable support to do any job, but she's a darn sight better and more caring than the endless stream of poor overworked dash in and out carers alternative. She needs specific times to be in therapy, support groups etc, we work round each others needs. She's getting practical carer training out of it alongside a free theory course. I top up her miserable CA with my PIP, and between us we get my needs met, and she feels a lot better through working even though it's a rip off. I throw in all I can to sweeten the deal.
I'll be honest and say 'managing' her is sometimes wearing, but I am for her too.

I advertised making it clear the offer was CA with the right to earn only a ltd amount on top. Listening to why people applied, sorted out the wheat from the chaff swiftly. You take your chances, but you do with standard carers too.

Person before her, was a recent older immigrant, very lovely, very low English, almost no paid work history, recently divorced and looking to start again and build references. We agreed a set period and both benefited.

One before that was a self funding part time student, with ASD, and MH difficulties, but very self contained and great when directed.
Having a flexible attitude about peoples difficulties (within reason) can work out for all. Even topped up it's a crap wage, so you need to look for good people who have their own needs, that it suits. They exist.

Kitkat1523 · 15/05/2024 11:26

Make sure you attend the discharge planning meeting ….tell the hospital discharge social worker that it’s an unsafe discharge…..that’s what my friend did and quoted policy….they back tracked and her mum was sent to a rehab placement for 6 weeks , paid for in full by health ( she got far more than your mum in pensions and savings)….don’t let them bully you

WilmaFlintstone1 · 15/05/2024 12:02

Hello OP, make sure you ask about a re-ablement package of care. This is up to six weeks of care and it’s free. It starts to attract costs if your Mum needs it past six weeks though.

No discharge home without a discharge planning meeting either.

fuzzwuss · 15/05/2024 12:09

When my mum came out of hospital she had an occupational therapist who came to inspect the home and will prescribe aids, and fixes to enable mobility. They also arranged for her bed to be carried downstairs. This was part of a package that she was advised of before she was discharged.

Sunnnybunny72 · 15/05/2024 12:24

This is very common, I saw it hundreds of times as a district nurse. Living in one room with a commode and a stream of carers.
Most were insistent on staying there although those that eventually ended up in a care home absolutely thrived.

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