Hello! I’m struggling with caring for my parents. My mum suffered a severe stroke back in February and my step-dad has Aspergers. He refuses to have a live-in carer and the council refuse to pay for that anyway. So I’m constantly under pressure to look after him and my mum who has complex physical needs and suffering from intense fatigue a lot of the time due to the catastrophic stroke (it’s a miracle she’s alive).
I’m self-employed but might need to get a job as I’ve lost opportunities to go out and find more business due to putting my parents first this year. I have no partner to help me pay the bills.
If I go back into employment, I’ll need to pull away from them.
My step-dad’s Aspergers brings with it huge complications and extra pressure - he’s very retiring and introverted, and doesn’t have any friends to support him or my mum. So it’s just me and mum’s carers. My sibling live too far away to offer hands-on help.
He also has a tendency to be inconsistent with important information (so I need to manage his appointments and mum’s complicated care requirements). He will hold back his opinion because he thinks I never listen to him, then it might come out at a later date, ruining plans I’ve put in place for them both.
I think I’ve hit my limit today - I feel like I’m beginning to stop caring. I think I’m emotionally broken from the non-stop battles to get mum the healthcare she needs and deserves, and think around my step-dad’s neurodivergence.
If anyone has any words of wisdom, please direct them in my direction as I’m feeling terrible about things.
@EMGEMG you are experiencing carer’s burnout and compassion fatigue. It’s no wonder. You NEED a break. If your Mum can manage with her care visits whilst you are away/taking time out for you or whether she needs to go into respite then that’s what needs to happen.
Do they both get highest disability benefits?
Do you have Power of Attorney for mum?
Do they own or rent their house?
Do they have over £46,000 in savings? Yes/No?
You simply can’t go on like this., something has to change, before you have a total breakdown.
In the process of securing benefits (attendance allowance secured for my mum already).
In process of getting LPAs done.
Own their home.
My mum’s savings are about to reach the Financial Assessment threshold for council contribution.
Is that mum is going below or above the limit?
Stepdad?
When did both of them last have a Needs Assessment, and you, a Carers Assessment?
I too was a carer for mum and son in my case, and self employed. Very hard
@EMGEMG
Wisdom needed, is a wise starting point.
It is in my experience possible to improve all situations with your premise,
Small acts of self care can build up to taking a stand against powerlessness.
Discard as autumnal leaf 
if not useful
Ment for questions to self not for answering on forum,
What have you done well
what do you value about the way you are
What’s your main area of worry/ concern,
What are the risks if you don’t address this,
Commit to one small or large change, commit to one action, i want to do this because……
who will I call on for help, when and how,
Once this thing has been addressed how would you like things to be in the future,
You inspired me to research these questions / qualities for me,
Thank you Ula
@EMGEMG Might be worth writing to their GP and explaining what is going on and how it is so difficult for you to cope. You cannot be MADE to care and you have every right to have a job. Are you at the same Surgery? If so the GP has a duty of care to you too. Unfortunately whilst you continue to help out, they will let you do it even if you end up totally and utterly broken. Do you have a local ‘Support for Carers’? If so, might be worth making contact and talking through options with them? You have EVERY right to a life of your own. I would frankly write to the GP and say that you are ‘stepping back’ for your own mental health and that they are vulnerable adults and see what happens then. Hard to do I know but you are at breaking point.
Very recently actually so nothing will change. My carers assessment resulted in £500 one off payment which hasn’t appeared after 3 months.
Thanks for your input. My mum’s GP is aware. My GP just told me to increase my anti depressants. It’s pointless. The problem is the massive gap in resources at the NHS and council.
Trouble is a/d not the answer and neither is increasing the dose. Can only send cyber hugs. But seriously please think about talking it through if you have a local ‘Support for Carers’. You cannot be made to care and if you were able to back off and I totally get how hard this would be, support would have to be given.
I refuse to take a/d’s. I know I’m not depressed. I am absolutely fed up with Social Services, but having nearly died twice, I want to live the best I can, not doped up!
@bowlingbun I am the same BB. I wont take them even though a close friend told me she took them when caring for her mother and what made me ‘special’ by refusing to take them! I would point out that she struggled to come off them. Like you, I am just fed up with ‘the system’ and everything being such a fight.
@selinakylie @bowlingbun This country is in deep trouble. Local mental health services are appalling (I’m in Suffolk) and would make life more stressful for me (I’ve used them before - it was awful). I’m not increasing my dose as it took me a couple of years to decrease following a breakdown (caused my another issue in my life). Just need to keep fighting.
@EMGEMG You are so right - lack of geriatric mental health beds is one ongoing issue. Also my issue at the moment is trying to get a diagnosis of dementia for my husband. He was discharged from the Memory Clinic in May 2023 after passing rest even though scan showed moderate brain atrophy. At the Pulm Rehab course the Physio who used to work in a Memory Clinic mentioned Dementia and messaged Surgery. They were great and had him in and referred him to the Memory Clinic who refused the referral. So we are back for more blood tests then another GP app when we hopefully will get re refered. Heaven knows how long the wait will be. Hospitals used to test for Dementia when the elderly were admitted but this has been stopped now. I think the NHS is trying to hide the number of elderly who have Dementia as they do not want and are not able to provide support.
Lack of hospital beds too which is why they are trying to bring in ‘Virtual Wards’. I will fight this if I get asked to do it as to me it makes Carers 24/7 slaves with no medical training. What on earth did we pay our tax for?