I am a full time 24/7 carer for my mother who is in her 90s has dementia, is partially blind, a little deaf, incontinent and completely disabled. She cannot eat or drink on her own.
I am reluctantly in this position and I myself am of retirement age but alas to no avail. I will be applying for carer’s allowance instead of my son who has also been caring for my mother.
i am having problems with my local council who have refused to do a proper assessment for my mother and are demanding that she pay the full amount she should be exempted for, safe to say it has pushed my mother into poverty and she is unable to pay the bills.
I’m dismayed that the council are charging your mum for services BEFORE doing a proper financial assessment.
That’s completely against all the rules. Assessments are supposed to be completed within 6 weeks.
Have you asked the council for a Carers Assessment?
Carers UK has a helpline which can go through all your finances, and your mother’s, to ensure you are getting everything you are entitled to.
From what you describe mum may qualify for NHS Continuing Healthcare, which would be entirely FREE!
Ask your GP to arrange an assessment as a matter of urgency. For full details, look at the CHCFramework, online.
However, given the severity of mums needs, is caring for her now getting too much for you?
It’s OK to say yes, you won’t get any criticism here for deciding that.
Too many people tell carers they must keep caring - so they don’t need to do it themselves!
There are 2 carers who come 4 times a day to do my mother’s personal care.because I simply can’t do that.
But when it comes to feeding her, giving her drinks with thickeners etc. dealing with anything medical related, shopping and laundry etc. that’s all me. It’s really a full time job, the washing machine is on all day every day 24/7. I also have to be careful and slow when feeding and watering her because she has a poor swallow and when it goes on her chest she has to go on antibiotics, this is why I don’t have the carers doing it because she always ends up on antibiotics with them, there is an endless list of other things to do and care for.
To be clear, the council did assess her but it was done over the phone no forms or anything, the woman assessing completely ignored everything I said and dismissed everything flippantly - the result: my mother has to pay pretty much all the excess to the council, since my mother does not have a full pension her savings are gone and she has been driven into poverty without even having paid what the council are demanding now. We barely heat the home anymore at the moment.
I wrote a letter after this demanding she be assessed properly with a form etc. as well as outlining the exorbitant water and electric bills and other difficulties but this was ignored by the council, in the meantime I sought some legal advice but was quoted £10,000 by lawyers so I left it at that. This was a year ago now and the bills have been mounting but I’ve been so inundated with it all it’s been difficult for me to keep on top of it, my son has also become very sick so is unable to help me as he did before.
As for caring I am ok with caring for my mother, in fact it was my father’s wish before he died and I am of retirement age myself, but the additional financial pressure the council is putting her under (with other family members having to pay towards her including with their time not just money) this is the problem.
Please contact the helpline asap for advice on how to challenge social care and for information on how to possibly improve your and your Mum’s financial situation.
You can email us at > adviceline@carersuk.org > and we will respond to your enquiries within 10 working days, although it can often be sooner.
Our telephone helpline providing information is open from Monday to Friday between 9am and 6pm - 0808 808 7777
Your Mum should also qualify for council tax reduction (if you are living with) / exemption (if you are just visiting her) Help with Council Tax | Carers UK
I hope you have seen the reply from Melly and followed up on the leads and seen the response from BB too.
Do insist on GP home visit to give her a check up, be there for it and inform the GP of all her health and continence issues. About a year ago my mothers GP said that she qualifies to be in a nursing home and she was in better health than your mother is.
Ask your GP to arrange an urgent NHS Continuing Healthcare Assessment for mum, this would be FREE care.
Lots of doctors don’t understand CHC very well. It is NOT just for the terminally ill with days to live, and neither is it only available for nursing home fees. Have a look at the CHC Framework online, for more details.
Also look at CHC Pointon case, which was featured on Panorama a long time ago, featuring a lady with a seriously ill husband who wanted to keep her husband home, with additional support.
If the GP is unwilling to arrange a checklist, then talk to the Practice Manager, or send the relevant section of the Framework.
I wasn’t meaning to suggest you put your mother in a home, I was merely saying the GP said that of my mother - it was more of a gauge for you for what to expect for assessment level of your mothers needs and/or be on your guard for them wanting to put your mother into a home. I was being brief and brevity didn’t work in that instance.
It sounds like the council have broken almost all the rules about assessing mum’s needs, your needs, and the financial assessment. Here’s what is supposed to happen, in summary.
The council are required to do a FULL WRITTEN assessment for people seeking help.
Then they have to consider what help she needs - including from you.
Then they have to work out the potential cost of meeting those needs.
Then, and only then, they should do a FULL FINANCIAL ASSESSMENT.
Then they should give a written financial assesssment to you and mum.
I would write to them, and make a “Subject Access Request” asking for copies of everything they hold on file about you, and mum, and specifically ask for copies of the written needs assessment, carers assessment, and financial assessment.
They don’t have a choice, they need to respond within a month. Have a look at your council’s website for their procedure.
I once reclaimed £8,000 on mum’s behalf when Hampshire didn’t follow the rules. This really is worth doing!
Thank you very much for this, it gives me hope. I’m a little lost where to write to about all of this since the council have been pretty much fobbing me off and ignoring letters unless they are sending us invoices to be paid for by my mother…
Send them back! Insist on a proper financial assessment. A council has an obligation to meet assessed needs, even if the client refuses to pay. Then make a formal complaint to Social Services Complaints Department.