I’ve hit the wall

Hi everyone, I would just like some advice/guidance please. (Sorry it’s a bit of a long read)

My mother had a stroke on 22/12/2018 and it has left her with severe weakness down the left side of her body. She is 70 years old, in a housing association home that my brother and I also live in.

During her stay in hospital, I constantly battled with my other 4 siblings about where she should stay once she comes home, with them arguing that it’d be better for her to be upstairs in her bedroom as she is also doubly incontinent now. I insisted that accommodating her in the downstairs lounge would be much better, primarily for her mental health, for accessibility and the chance to be taken outside in a wheelchair easily. I think this has rubbed them the wrong way, because since she came home in April 2019, they have left me to deal with all of her care needs.

For the past 5 months I have had to go from reducing my working hours from 37.5, to 15 and having ultimately resigned as nobody would come and take over in order for me to go to work. I now never leave the house, and when I do I feel anxious and self-conscious- like everyone is staring at me and I never used to feel like that before.

It has been the hardest 5 months for me, she does have 2 carers who come in three times a day to wash her, put her on the commode and then hoist her into bed each day but she relies on me to do absolutely everything else. I rarely get any support from my brother, although I feel like I can’t ask him as he is the only person working and providing shopping in the home etc.

When my siblings do visit; they constantly criticise me and imply I’m not doing enough to aid my mums recovery. She requires constant turning and adjusting during the night, so I sleep a maximum of about 3 hours a night, followed by helping her brush her teeth and wash her face each morning before the carers arrive.

I’m always exhausted and have reached breaking point, I’m 26 years old and fear that this will be my life. I feel selfish when that voice in my head tells me that this is when my life should be starting, because it’s now all on pause. I have now discovered that I am 7 weeks pregnant and the exhaustion and discomfort has become even worse (I sleep on the sofa to turn her during the night) but I’m afraid to tell any of my siblings in case they think I’ve done this intentionally.

I have applied for AA, UC but I’m confused as to whether or not to apply for Carers Allowance as it says it may affect her pension credit. I just feel trapped and broken, but then stifle my laments because it must be 10x harder for my mum, but I do just wish she’d appreciate me a bit more.

HI Jasmine,
welcome to the forum.

There is a lot of info in your post, but a couple of questions (only answer them if you want to.) Thinkin ahead, do you want to keep the baby? Is the father supportive?

Right now, you need to tackle your anxiety of going out asap, before it gets worse. You could go out for a walk whilst the paid carers are with your Mum. I understand that your brother is the breadwinner, but I see no reason why he couldn’t “Mum sit” some evenings each week.

Forget your other siblings - on the forum we call them, “helicopter relatives,” they hover in, don’t help and criticise to take away their guilt at not helping. However, they WONT change.

Re carers allowance and how it affects your Mum’s pension credit - I don’t understand how that works, but it’s important you claim it whilst you are caring, as it means you will get your pension when you are older - I know that seems a long way away, but it needs considering. It also means, the DWP take the pressure off you re working whilst caring.

Now to think further head. How much more is your Mum going to improve? Your Mum is 70, she could live until she is 90 plus and she needs a high level of care. You have a baby on the way. Would your Mum cope with you just being a daughter (not her carer) and having four care visits a day? If not, then and her need to plan ahead.

Is the tenancy in her name?

There are some tough discussions and decisions to be made.

Keep posting, if you need us.


Carers Allowance … effect on other benefits ?

Carer's Allowance: Effect on other benefits - GOV.UK

Under Universal Credit ?

Universal Credit | Carers UK

( Not an easy read … anything involving UC is NOT easy ! )

Is CHC / NHS Continuing Healthcare a factor here ?


Hi @Melly1 , thank you so much for your response, I really appreciate it.

My partner is really supportive, ideally he’d like me to keep the baby, but understands how impractical the whole situation would be and how it would take a toll on me.

I will definitely try and get out a bit more, but even though I leave everything out for them, they always call on me looking for items pretty much in front of them -_-

Reading through the things I could claim for has all been pretty confusing, but thank you so much to Chris for those links, I’ll have a read through :slight_smile:

The tenancy is in her name, yes.

I don’t think the transition from carer to just daughter would sit well with her, I’d have to leave her downstairs in the lounge to sleep upstairs and then ultimately stay in her bedroom to then turn my box room into a “nursery”, something my siblings accused me of (wanting her to be downstairs so I could have her bedroom) and I just can’t deal with that added unnecessary aggro.

But honestly, thank you so much for listening

Thank you so much for this- I didn’t know how to quote reply- I’ll definitely have a read through!

Your welcome.

Social tenant ?

Dare I mention the word SUCCESSION ?

Can you inherit a housing association tenancy? - Shelter England

( Housing Assication. )

Can you inherit a council tenancy? - Shelter England

( Council / Local Authority. )

ESSENTIAL reading !

Hi Jasmine

Things sound really rough at the moment. You shouldn’t have to make the choice between being a person in your own right or being a carer, and you shouldn’t feel guilty or selfish. I presume you mum has had a needs assessment through Social Services but have you had a carer’s assessment?

Regarding the pregnancy, BPAS may be able to offer you counselling to help you make a decision: https://www.bpas.org/abortion-care/considering-abortion/advice-and-counselling/


Thank you for this and apologies for the sporadic replies. I haven’t had any assessment since my mum came home, a social worker did come to visit back in April but I wasn’t at home, and by the time I had received the copy of the notes she had made and phoned her to correct her on things, she said my mums case is closed and she’s been moved on to the “Reablement team”.

It’s been harder this week as I haven’t been out of the house yet, let alone had the chance to book a doctors appointment, and pretending to have the same energy levels to keep getting up all the time during the night is really affecting me.

If Chris gained a personality, he’d be the most important person on this forum…

He is important, just wish he’d but a bit off oomph into replies…But we all love him.

You are choosing between starting a new family or caring for your Mum? When its put that simply do you even need to think twice… Next time any of your siblings visit, walk out and leave them with Mum. If they say you are doing something wrong, invite them to come and do better,

In the meantime inform Social Services of your situation and that Mum will need a better care package…

It’s your time to shine…Just make sure you shine bright!

Hi everyone - I just wanted to update everyone as I hate leaving threads unfinished.
So from when I created this in September 2019, I opted for a termination. It was horrible but ultimately for the best (I still have the box bedroom in my mum’s house)

Only today, on 27th Feb 2020, did my borough’s Social Services provide me with a Carer’s Assessment over the phone today. We discussed respite care and allowing my mum to attend a day centre once a week and she’s made the referral.

One thing she said on the phone was that I cannot register as a carer as myself and my mum have the same address, and that I cannot claim Carers Allowance if she claims AA, and that it was my choice to stop working…

That’s opened another can of worms there but for now, I have my interview for UC at the job centre tomorrow morning. I will call Carer’s UK on Monday morning and discuss all of this with them as if that’s the case then I don’t even want to apply for Carer’s Allowance then as she’ll lose her disability premiums and that’s been covering her Housing Benefit and Council Tax fully.

Thank you to everyone once again, I’ve appreciated it more than you know :slight_smile:

I’m not sure what “registering as a carer” actually means, but the rest is nonsense: my wife received AA (still does) and until I reached pensionable age I was in receipt of Carers Allowance (it stops when you get your state pension) - and we both live at the same address.

Hey Jasmin

Nice to hear from you again. Absolute rubbish that you can’t claim carers allowance. Carers allowance is a benefit for you not for mum and won’t have any impact on your Mum’s benefits. Please do phone or email the helpline.

I too was told that if I claimed carers allowance, the person would lose a disability premium or something.
Think this needs to be clear here, can claiming carers allowance affect the carees benefits?

From the second link (re. Attendance Allowance) :- "If you do have a carer, they could get Carer’s Allowance if you have substantial caring needs".

Claiming CA will NOT affect Attendance payments but YES it can affect another benefit.

I think it’s SDA which is an extra if you don’t have anyone to help you.

Talk to the helpline. If you are caring you are entitled to CA if you meet the criteria. It’s your right to it, so claim it! The disabled person is lucky to get 35 hours plus care for a miserly £60!!!