Hello all. I’m new here. I’ve been helping to care for my 78 year old mum who had a massive stroke in February and is now living with complex physical needs. Caring for her is a constant balancing act due to the various conditions she has.
My step dad is her primary carer, but he’s getting forgetful so I’m also supporting him. I’m self employed which gives me some flexibility but I am increasingly concerned about losing my income as a result of the time needed to constantly coordinate my parents’ care and medical needs.
I’ve was told how hard it was going to be by others who’ve had to deal with social services, carers and community NHS teams, as well as doctors, etc. But this is on another level.
I’m on my own - no partner and my three siblings aren’t helping on the day to day stuff. I live close to my parents which is good.
I haven’t had any kind of a break since last Christmas and I’ve had moments when I’ve felt like I was having a breakdown. My social life is non-existent as any spare time I have is spent catching up with work. I do try to schedule in coffees with friends, but then I get back to work or my parents. My siblings won’t take over from me (I know this so won’t waste my energy asking as I’ll just be disappointed and angry).
The disaster that is social services and the NHS mean I’m having to constantly hassle my mum’s team, and do lots of my own research to make sure my mum gets the care and treatment she needs and deserves. I’ve had to get a solicitor to write an email to send to the ward’s consultant the last time mum was in hospital (consultants always give me the impression that they just want her to die so I have to fight for the most basic of care).
I’m finding myself having to work even harder to earn more money to pay for support - a personal assistant. As I can’t cope with all of the work on top of running a business.
Am I missing something or is coordinating the NHS and social services always this tough? On top of the emotional stress of caring for my mum and step-dad. It feels like a living nightmare.
Firstly sadly you aren’t missing something- getting good care from NHS and social care is something we are all increasingly having to fight for.
However, you shouldn’t have to pay for it. Your Mum needs a Needs Assessment and with such complex health related care needs may well qualify for Continuing health care funding.
Welcome to the forum @EMGEMG
There’s no point trying to ‘gild the lily’ - there is no lily or gild…sorry - you’ve summed up the realities of coordinating, navigating and pushing the system.
I’ve a small business of my own, that’s more for brain stimulation than profit/income building. after resigning from the 'big’job it was too much stress trying to sustain ‘job’ over caring…(personal decision)
You’re SO right - these days (unlike before) there is no single GP-relationship, long-term understanding of 1 person’s health, no holistic whole body understanding of what’s happening over time, and so WE as carers are the ones who champion, advocate and protect at every instance…
(even when we are suffering from covid +ve aswell and strep pneumonia - as was my recent case with mum being hospialised)
What should happen and what does happen are getting further and further apart and it’s always family carers left to fill the gaps.
I’ll start the money conversation to start with.
There is a specific reason for each question.
Do your parents own or rent their home?
Do you have Power of Attorney?
Are either of them claiming DLA, PIP, or Attendance Allowance?
Between them, do they have more than £46,000? Yes/No?
Have they made a will?How old are they, and you?
Have they each had a Needs Assessment from Social Services in the last year?
Have you had a recent Carers Assessment?
I’ll be back tomorrow, currently have a dreadful cough/cold and been in bed all day but at least typing doesn’t give me a sore throat!
@EMGEMG Welcome from me too. I can only agree with the other posters. The NHS is totally broken and Carers are having to take on more and more to fill the gaps. What SHOULD happen and what DOES happen are totally different especially with regard to ‘Hospital Discharge’. Everything is such a fight.
Maybe your mother needs more care than realistically you and your father can provide? This is something to at least think about?
Please do not feel alone. So many on here are facing huge challenges.
From what you describe mum may NEED more care than one person can provide, especially when you are also supporting dad and trying to earn a living. There is no shame in saying that you can’t do this any more, and if your siblings refuse to help they have no right to any involvement in any decision. It is your decision alone. Working non stop as you are, with no social life, is simply not sustainable long term.
I’m looking at care homes but whether not the council would agree is a whole other issue. We’re self-funding carers right now but the money will soon disappear so no idea what will be available to my mum. I’m fighting for her to go into a nice care home with very good extra care - again there’s a massive gap in need when it come to care homes. It’s usually care home or nursing home and having visited the ONLY nursing home in our town (coastal town with lots of older people who need better support), I l know she’ll decline rapidly there. So I’m trying to rally social care to have a meeting this week. Wish me luck.
@EMGEMG I do wish you luck. I agree with regard to appealing though for CHC. Is it worth at least approaching a specialist solicitor? Sadly SS do not seem to step up until things are literally at crisis point or have already broken…
@EMGEMG, welcome and sorry to hear you have been turned down for CHC funding… this is quite normal first time round and unfortunately just something else we have to fight for. Hopefully your appeal will be successful.
Local authorities just don’t want to have to pay the money out, so will often dismiss an application from the start, even if it is obvious the person clearly qualifies. The days of the NHS being there to support those who need it seem to be a distant memory and it is now a constant battle to get even the most basic level of care that we should reasonably expect.
CHC funding is the responsibility of the NHS not Social Services or a hospital. Too often relatives are fobbed off by people who have no say in the process!
Appealing is very stressful.
If the assessors did their jobs properly to start with an appeal would not be necessary.
Long, long ago I worked in Social Care, I was dismayed at how underhand mum’s assessor was, first turning up extra early, like an hour early. This meant she was asking mum questions without me. Mum hated to admit that she was as disabled as she actually was, she couldn’t even roll over in her bed, but she didn’t qualify for highest points because staff said she “assisted” them! I was determined to fight the system, hence the £10,000 spent on solicitors fees, but in the end I realised it was either give up or have a nervous breakdown, after 10 years in which I’d been disabled, widowed, had cancer surgery, my brother had pancreatic cancer, i was running a business and had endless problems because of Social Services. No carer should ever be placed in the position I was in.
