Carers Allowance should be increased

[Noras]

Recent events on Mumsnet has made me even more upset about continuing to be a carer for my adult son. There are many carers out there doing the job voluntarily. Their kids are adult and there is no duty of care owned by adults. Moreover there is no asset against which the state can claim against for social care. The decision to care for our off spring is a fervent belief this is best for the time being.

Whilst my son lives at home I get £81 carers allowance a week. If my son lived in supported living I would

Be able to charge £15 per hour carers rate (including holiday and pension).

Be free to choose my hours and never have to worry about cover to go out - that is the States duty of care

Can opt never to have to complete a pip form or universal credit form again - leave it to another carer!

So the push is for me to want my son either on social housing or supported living

Caring duties include

Sourcing and recruiting PA / interview / draft advert and check applicants etc

Send out contracts to PA’s

Chase and send in timesheets

Train PA on how to deal with DS

Draft comments and arrange attendance at EHCP reviews. Chase updated EHCP and check it for amendments and liaise with council etc

Apply for transport for college - if needs be advocate. Liaise college and transport and taxi driver for changes of which there are many
Weekly exchanges of chase up and changes

apply for Pip - complete lengthy form. Be available for interview and conduct interview - DS clearly can’t

Universal credit - apply - argue legal points if necessary - administer funds - set up bank account for DS and administer it via a monintjon or poa

Care

Take for hairdressing appointments
Cut finger and toe nails
Hold tissue and encourage to blow nose as required
prompt shaving and if needs be husband shaves him
grapple with him and insist clothes are changed
laundry
take to dentist and keep eye on teeth cleaning
laundry
clear blocked toilet
prompt meds when constipated or asthmatic and hands on care with cold as he can’t blow nose

Supervision

Stop overeating and monitor diet
Stop crazy eating eg microwaved salad or eating microwaved tuna and sweetcorn at midnight
check his desire to experiment in kitchen
discuss and practice food cookery and what he will do at residential
Ensure healthy diet because that would not otherwise occur
Stop him cutting bread rolls whilst in hand
shopping/ clothing

do all clothes shopping
check wardrobe periodically to ensure shoes js clothes all fit still - he cannot seem to vocalise that need well

Toileting

Be on hand to unblock toilet and clean mess

Activities

Organise all his activities to encourage socialisation eg disabled group or drama group - this includes research for holiday activities

Get debrief form Pa re activity

Liaise with social groups eg one council one needs to know if taxi required weekly etc

Receive feedback form groups re how he is doing/ accessing community

Help with social disabled group so organise an event or two ( to make these things happen)

Take to the gym to swimming to maintain health - this involves micromanagement in say swimming pool

Take out on bus to train and persevere with this
Make him experience busy bus times

Train how to do shopping and wait for change

math skills - ongoing - mental maths an issue due to lack of working memory on 2 and 4 percentile - yet he can do algebra and has a gcse!

Try to train to use Apple Watch as he won’t wear a tracker ( we bought it for him with our own money!)

training - social interaction eg on dog walk or in shops etc

Also keep up to date on all learning activity opportunities and be excellent welfare / eduction lawyers advocates

Finally be there every evening and night due to his anxieties and vulnerabilities unless relieved by PA or activities so I CAN HAVE A GLASS OF WINE

Pay rate £81 per week

as opposed to several hundred for fewer hours work and shared load in supported living / social housing

Yes. The state steps in to take over or support when the family can’t do it alone.

What if family dont want to do it?

Maybe some people dont want to do it because after the person they are caring for dies, they trot along to the Job Centre and then get treated like a scrounger who has sat on their arse for the last few years

then the state will have to suck it up to the tune of £££ - at least if the disabled person is an adult. I know a family who refused to carry on caring. The care bz SS cost multiple times of what CA would pay. Thing is, most families will try to take over the care even though it comes with huge financial and other personal sacrifices. I plan to care for DD as long as I am able to (possible until I drop dead).. And the state knows it. So it's easy to throw us under the bus (financially).

Exactly.

I don't want to do it anymore! I hang on by a thread every day. I never used to understand those tales in the papers "she walked out one day and never returned". I do now.

But I am a scrounging benny claimer who needs to be subject to "an overhaul" in case hard working on-here-all-day mumsnetters have to contribute.

No wonder the politicians don't pay no mind to all of us Carers - the last few pages of this thread is just arguing, not just in the heat of the 'night', but carried on with throughout the cold of the next day.

Acting like we were born to rabble-rouse in the muck is not very helpful to anyone is it. Anyway, my carefully crafted email to my local MP has been acknowledged and I'll share my response once I receive it.

As it's a General Election year, I suggest every Carer does the same - Solidarity! fellow Carers.

Is there any possibility of residential care? I know parents find this difficult but having worked in the sector I feel that finding the right setting and being around to support them in their new life is possibly better than a middle aged adult who has always been cared for by mum and dad suddenly finding themself rushed into a perhaps not ideal setting for them as elderly parents can no longer cope or have died.

In my setting we generally found the parents needed lots of support for this change but we were always very supportive and encouraged them to view it as a positive.

I do understand the wanting to walk out and close the door, I'm my husband's carer and have been for over 30 years and it is so difficult at times particularly as I am obviously not as fit as I was 30 years ago.

https://www-bbc-co-uk.cdn.ampproject.org/v/s/www.bbc.co.uk/news/articles/c98zplqgn9no.amp?amp_gsa=1&amp_js_v=a9&usqp=mq331AQGsAEggAID#amp_tf=From%20%251%24s&aoh=17149136259874&csi=0&referrer=https%3A%2F%2Fwww.google.com

Pertinent to the discussion. Including legalities issues.

@MistressoftheDarkSide And thats why carers should get a say in the assisted dying debate.

So I started the post so can give examples of things as they occur. My opening post o was a bit glib born out of a sense of frustration with shoes ( i had had a frantic search for shoes in an airport 30 minutes before fight a few weeks back because his shoes did not fit despite me having done a check with him on everything. I did feel frustrated that he is not very vocal at saying things fit or not so it’s a real use your thumb job and don’t trust him in future. As he thickens up into a man’s body, the same goes for clothes.

Anyhow It’s 6.27 and already my husband (bless him) has been up twice to tell our son to stop stimming. The first time was at 5.00 because our son was really excited, had made batter mix with the PA last night so decided to get up early, get dressed and make himself a pancake. The trouble is that he was bouncing fast and repeatedly up and done wearing socks on a hard tiled floor whilst using a hobb to cook a pancake.
He also has pronounced motor coordination disorder. So he was told not to bounce and it was too early for this. Within 30 minutes there is more bouncing/ stimming from his room. Now in his room where he has bounced he has worked havoc on the floorboards so it’s not ideal - in my head I have visions of him one day breaking the floorboards and falling through. He was been persistently told not to bounce upstairs for this reason. Anyhow so up we are again. So that’s twice there has to be supervision and it’s not yet 6.30 am. Moreover it can be a book ending situation of him being hyper at 2.00 am as well. The reason was that the PA stayed late so as we were getting back after 12.00 for a one off concert. Anyhow DS was excited. But this is a 20 year old man bouncing not an 8 year old.

So I also think that I’m going to have to grapple with his melatonin - as in work to solve the issue of why he is not following normal sleep patterns and also bouncing a lot. We prompt to take it but I don’t think he has been doing so.
So now I will supervise to take but then we can’t force it because he is an adult.

The impact of all this early morning activity was be felt later today when he is wiped out and then falls asleep mid afternoon etc which will impact into our day as he will be harder to placate and we are seeing close family friends for early evening dinner. They like having him over and tend to make a lovely effort with him.

There is a real issue with ND people and their rhythms so they can easily be all over the place and nocturnal. When he moves into independent living someone will have to keep a handle on that as it will add to a sense of disassociation with the rest of the world pretty quickly and rapidly mentally unstable him.

Sorry about the spellings and grammar in the above post.

It's fundamentally different as one has a legal duty and the other does not.

Quite. God knows how you would ever alter that situation either- ‘family’ is such a nebulous concept. Would step parents be responsible for adult step children? Would abuse victims be held responsible for caring for their abusive relatives? How about siblings? They didn’t have any say in having brothers and sisters but they are still related. Would the ‘responsibility’ of child carers be written into law?

It’s just a ridiculous unworkable idea. As is the idea that the family can somehow be ‘expected’ in some official sense to do the caring whilst having no legal obligation to do it.

A parent can discharge their responsibility just as a carer can? So im not sure that distinction is a good one.

No they should not. It is not their life.

I do not agree with this idea. But it is what China does. And elderly parents have taken their adult children to court for a lack of care and won.

Ah yes, that’s an excellent model to emulate.

That's a really fraught subject. I think carers should have input as advocates if there have been stated and documented wishes that someone would not want to be kept alive beyond a certain "no going back" point - my experience is dementia related.

My MIL has end stage dementia and when she was still aware of her situation she begged me to help her end it all as she knew what was coming. Now of course she is being kept alive in a care home, bedbound, non-verbal, on pain Meds for muscle constricture unaware her son has died and now on a liquid diet. She's been there 6 years, the last three in this condition. I'm POA, and just gave permission for her Covid booster.... she is allegedly "kept comfortable"..... but is she? I can't even think about it without absolute panic and horror on her behalf. She didn't want this, but there's no solution, beyond a DNR.

In my late DPs case, he suffered two catastrophic brain bleeds, rendering him comatose and quadriplegic. It happened over a three week period, and when the doctors decided it was time to "pull the plug" I was behind them. Losing function and ending up like his Mum, something we had discussed, was his ultimate nightmare - and still, some of his friends objected in case of miracle. I wanted a miracle, but it wasn't remotely possible. It turned out he had undiagnosed cancer that had metastised to his brain, discovered at post mortem.

Fucking hell, its just the most awful, horrific, disturbing thing to deal with, but I still can't trust the state to get it right via legislation. So I dither around in my own personal hell and see a picture so big and vast and emotional that cannot ever be absolutely clear cut.

Urggh. It makes me want to do vodka shots through my eyeballs and step off the world myself.

@MistressoftheDarkSide that is a shitty situation.
My mother was adamant she did not want treatment for cancer and died very quickly. She did not want the situation she would be left in wearing a catheter and needing some care. I was horrified, but obviously went with her wishes.
Many illnesses non treatment quickly ends any suffering, but with dementia people can survive many years. It is a difficult issue.
I would agree with assisted dying if we had a different government and culture. But I think it would quickly become a scandal with elderly people pressurised into agreeing to assisted dying.

Exactly. Exactly this. Solidarity and love to you x

It's catch 22 in every direction - suffering on suffering that ripples out and leaves countless victims reeling from the shock waves. I had similar with my Mum too x

Sometimes I wonder if stoicism is actually self-protective numbness.

Sorry, waffling again.

But sending my best to you xxx

I think that in OP's circumstances, absolutely, the system needs to change and you should be able to get a direct payment to care for your child at home. The rules about not being able to get a direct payment to care for someone at the same address are unnecessary - better checks required to ensure the DP is not be abused would be required but that's not impossible.

However, in some cases, carers allowance is used as an excuse to not sign on or be looking for work. If was a bit dodgy and I wanted I could claim carers allowance for looking after my mum and not work, or work just a few hours, and then I could do sod all care for her other than her weekly shop and appointments because no one checks you are providing 35 hours per week!

I know of many cases whereby people claim carers allowance for someone claiming AA, PIP or DLA and do sod all - NO ONE CHECKS. Especially when the care is for an older person.

£80ish per week to care for someone as OP does is a joke. £80 to pop in on elderly person with shopping and a bit of their life admin though... (In some cases, I do appreciate there are many where the caring role is significant.)

I want support to end your life.
My mother’s dementia developed slowly during her 60s and she had menieres but I think it was TIA. She was really not capable for all the 70s to completely look after herself but then it worsened in her 80. The last 3 or more years I could have done without. But before she had a few months of care I did her personal care such as washing her hair, choosing her clothes etc My dad relied on his kids so I had young children one was at the time having prolonged fits, learning issues and all sorts of stuff. I would send him a day in to nursery that I paid for to care for my mum to give my dad a day off.

When my kids were older my dad had cancer 3 times before dying. The last 9 months or so of his life were intense as CHC funded carers would come, give breakfast at 6 when he was asleep and leave. I would do a 6 hour shift from 7 until 2 and feed him breakfast and make his lunch, mop up his blood from the carpet etc He had a tumour in his back and it was broken it still wanted to go on slow painful walks to the church or for a coffee. The CHC carer would pop in for 15 minutes at lunch - my brother would the come in and take order / I would walk over to my disabled sons school fetch him bring him home, support him with school work - make dinner and walk dog etc.

When things worsened he needed plus 2 but they only had one carer so we agreed to support.
my family shared shifts and for instance helped with toileting / commode - one held him and the other wiped his bottom -
also sheet changing etc

My 17 year old daughter would look after my son and fetch him from the house to home and feed him with no recognition. She messed up her mocks and one of her A Levels was permanently messed up - the stress made her have a kidney stone before the October exams which was 5 mm.

So having already hurt my daughter’s life - I would want to be able to manage my own death before letting my daughter have to care for me if I had a few tia’s or mini strokes that’s it One or two ok but any more and it’s a one way ticket to vascular dementia. I want my son set up and my daughter to work in another country eg NY to anywhere else. I don’t want her life destroyed by mine or my son’s needs.

My brother who is 3 years older has just had a TIA so it’s upsetting.

@Noras

You have my utmost respect.