Hi Newbie with the feelings of a bleak future

Hi I guess I’ve been lucky throughout my caring role but feel that my future is now looking bleak.
My mum was injured at work when I was 4 so really I have lived a life of caring for 38 yrs to some degree.
My dad passed away 25 yrs ago, I am an only child and my partner isn’t geared up to be a supportive person.
So a little breakdown of where we are as of today. My mum has Lewi Bodies Dementia, recently broke her hip and wrist which in turn caused problems with her BP and infection. She needed a blood transfusion HDU and rehab treatment before she was readmitted to hospital where we were called to her death bed twice before being placed on My Care Plan. She has somehow beaten immediate death and is being sent home with a NHS Continued Care Plan in place which I am grateful for. I had recently gone self employed and have now had to pack that in as I have no one that I can rely on to sit with her whilst I work and due to an advanced decision being put in place by the hospital I don’t really think work is the best idea just in case the worst happens quicker that what I am expecting. I know I am lucky to have time but feel as if my life is on hold forever as we don’t know how long we have.
Whilst she has been in hospital and been off My Care Plan I have spent hours with her even staying pass visiting hours all because she doesn’t want me to leave, I have said that I will stay with her when she comes home which will be tomorrow but know that she will drive me crazy and I will crack. I won’t be getting involved in her hands on care only because it takes 2 people to help her so that in a way is a blessing but just to be stuck 24/7 is a thought I can’t be dealing with.
The current financial situation is PIP, ESA for my mum and CA for me.
Housing Situation is Council full rent, no council tax for my mum and joint mortgage and council tax for me.
TBH CA is a Pi$$ take and I feel like a hobo as I will have 2 places I can be but not 1 where I can settle.
Sorry for the above thanks for reading.

Hi Carrie … welcome to the canteen.

Others will be along to post their own observations.

Purely on the finances side from me.

Mother … social tenant … rent paid in full ( Without Housing Benefit ? ) … PIP paid ( Under state retirement age ? ) … through Universal Credit ?

ESA mentioned … I presume your partner ?

CA claimed by you … owner occupier … mortgage ( Any relief on the interest through the new Loan scheme ? ) … no income related benefits being paid ? … under Universal Credit ? … council tax paid ( With a discount through income ? ).

First step … online benefits calculator … time to crunch some numbers to ensure ALL benefits / allowances out there are currently being claimed ?

Let me know if the above deductions / assumptions are correct , and I will then ponder on your next step … assuming there is one within the criteria.

Briefly … NHS Contining Healthcare ? … full sp on what that entails , and who should be doing what … on the main thread :


Any deviations between what the " Book " says and what’s happening in reality ?

Hi Chris thanks for answering.
Firstly sorry for posting in the wrong place :slight_smile:.
Secondly mother’s housing yes full rent no housing benefit. Pip paid as she’s 64. ESA paid to my mum.
My partner earnings would most likely make anything to do with our mortgage still payable in full and as I guess I still live there we aren’t entitled to a discount on the council tax. I have no other income available to claim due to savings.
I just think that the situation sucks when your a carer and you as a person suffers as you can’t work for a break and can’t afford to pay for a break as you would only earn what you are paying so catch 22.
I thank you for the links and I will look at the information.

Your welcome.

And … welcome to CarerLand … wherein HALF the 7.8 million inmates are on The Street … close / at / below the official poverty line … an occupational hazard for most !

Mother … PIP and ESA ( Available for work group ? ).

Reads as if a fresh assessment may be advisable ?

Looking forward to any questions that rise from crunching numbers through the calculator.

No just ESA payments related to ni contribution. Just found out that her health is failing again and without her investing in herself the end is closer than we know

Thanks Carrie.

ESA … support group … upto £ 110.75 per week as I type ?

Severe Disability Premium … I presume not paid ?

If paid , and Universal Credit kicks in , there are " Problems " :


If you are getting the Severe Disability Premium

The Severe Disability Premium is paid to people getting certain means-tested benefits (including ESA) who live alone and who have substantial care needs. It is not available under Universal Credit.

If you are getting the Severe Disability Premium as part of your ESA payment, you will continue to get it for the time being. The Department for Work and Pensions (DWP) is proposing you won’t be moved onto Universal Credit until you qualify for transitional protection, but final details are yet to be confirmed.

If you are already claiming Universal Credit and lost the Severe Disability Premium when you moved across, the DWP has said that you should now get an ongoing payment as well as an additional payment backdated to the date when you moved onto UC. Contact your work coach or the Universal Credit helpline for more details.

The above info is just for the record … if ever needed.

Carrie hi - although your poor mum is young for dementia, that, grimly, is the condition of Lewy Bodies.

However, I’m wondering whether, despite her youth so to speak, you wouldn’t consider her moving into residential care into a care home specialising in dementia?

That way she would be very well looked after physically (please do not think that all care homes are ‘nightmarish’! Those are the ones that we read about in the horror stories in the press. But there are some really lovely care homes - my MIL has been in two, and both were fantastic!). But, best of all, it would ensure YOU did not have to be with her, as you are facing now, 24/7.

You could spend ‘some’ time with her and ‘some’ on your own life/work.

If she owns no property she should be eligible for free residentiall care - though for that very reason the council will be loathe to encourage her to move!!! It’s cheaper for them to supply call-in carers than have her in residential care.

Even if you feel she is not yet ‘bad enough’ for residential care, start thinking about it anyway. As we all grimly know, dementia will only get worse and will, in the end, sadly, prove terminal.

As you have vividly said, it is the ‘not knowing’ how long we’ll have to care that cripples us. PUtting our lives on hold for a time we CANNOT forecast at all.

I know that we all would like a ‘swift easeful death’ rather than a long drawn out miserable one, but sometimes the former is not possible.

You’ve been a devoted daughter, in exceptionally difficult circumstances, and it’s desperately sad your mum is now tormented by early dementia - life just is NOT fair sometimes.

Welcome to the forum. Have you ever asked the GP how long he thinks mum has left? I know this is impossible to answer accurately, but there are things you MUST plan for.
One day, you will be on your own, and need to start thinking about what you will need, where you will live. You DESERVE a happy future, and planning will help you keep positive.
What work would you like to do? Do you have enough qualifications? Could you study now, as well as care? I did a degree as a mature student, despite having two children, one brain damaged. Pure escapism, but I earned qualifications that have been invaluable since. Most importantly, if gives you something positive for you to focus on.
You also need to think about the “final arrangements” for mum.
Then there’s the difficult issue of housing. Check whether you can stay in mum’s house after she moves into residential care or passes away. There is a strong possibility they will ask you to leave I’m afraid, better to find out now rather than have a horrible surprise when you are grieving.

Hi Carrie

Just to say know where you coming from, got my mum into respite wednesday and longer they keep her the better as far as I’m concerned. :whistle:

One bit advice I would say is try to maintain toehold in employment. My little job (up to 16hrs a month) is hardly worth it financially (tops up my CA basically) but does provide focus outwith my caring and keeps me looking to future - which hopefully wont be as bleak as now!