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AIBU?

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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:
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:
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.

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

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.

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.

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?

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.

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.

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?

RookieMa · 15/05/2024 00:38

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

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

StormingNorman · 15/05/2024 00:33

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

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.

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

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