Carer to autistics x 5 - Personal Financial Mess

Hi There, I’m new to this forum but would like to find out how I can get out of the mess financially that is caring. I feel quite cheated out of life at present, but want to find a solution to get myself a better life.
To keep it short, I didn’t know I was a carer until 18 months ago when our daughter was diagnosed autistic. In fact, I’ve been a carer all my life (well over 40 years now) and would like to give it up. I was born from autistic parents both totally unable to see our needs. I had no choices but to care for them (mental health, depression, hallucinations, paranoia etc) and my brother. My brother is himself a HF autistic person, who never got any support as a child. Now there’s not way I can get him the support, because he is an adult. He expects me to help though. I’m married to a HF autistic husband who’s got autistic parents and we have an HF autistic daughter. That’s 7 people all with different need, who refuse to engage with anyone apart from me. I had to give up work 7 years ago, due to another tonne of family troubles to add to the mix. For the past month, my husband has given me a couple of hours a week for myself. Heavenly! Bless him. He works hard to keep us afloat. We are heading to a financial crash though, unless I can put in place something soon. There’s no way any employers would give me a job. With the unpredictability of caring, I couldn’t keep it. :frowning: With so many High Functioning Autistics, they appears perfectly fine to the rest of the world, but crumble or get lost in their thoughts, interests and illusions as soon as they are home. I’m picking up the pieces and it’s draining. I’m cutting back on the care, I’m providing to my parents now. For our daughter, I’m entitled to nothing because nobody sees the disaster that home life can be. It’s detrimental to my life, but I refuse to let this beat me (the anger’s talking here). Any financial support, respite care anywhere? Any advice welcome…Thanks in advance.

Hi Lily … welcome to the forum.

You certainly have more than just your hands full ?

A whole host of links follow for you to explore.


An online benefits calculator … ideal for those " What if " scenarios … and / or expert advice … CAB and / or CUK’s Advice Team ?

The choice is yours.

Links to all three follow :

( CUK … Best by email. )

Council Tax … disregard / discount ?

Probably a discount :

Needs / Carer Assessments … upto date ? … the gateways to potential respite care … with or without a price tag.

Links for both , explaining what they are :

The Care Needs Assessment Explained | Age UK

Carer's assessment | Carers UK

In case it’s needed , a guide to home care services … what’s available , and who provides them :

Housing … owner occupier / tenant ( Social or b.t.l. ) ?

Enough from me … plenty in the above links for a full m.o.t. on your present situation.

Others will be along to extend their welcomes and add their insights.

Thanks, Chris. Much appreciated support. I’ll investigate the options. Take care. Lily

Your more than welcome.

Feel free to bounce anything off us here on this forum.

If we can’t help , we’ll probably know someone who can.

It’s time your family realised that you have the right to a life of your own!

I think the best way out of your situation is going to take time and support. Ask your Carers Centre or GP to refer you to face to face counselling. Then you can talk through the conflicting demands on your time. For me, this was life changing.

With such a complicated situation, again, face to face would be best to work out what you are entitled to. Is there a disability rights or advice service in your area?

Thanks for the kind message. I had some counselling last year. That was of great help. Since then, new events have put even more pressure on me. I’m going to get some more counselling shortly. I hope it’ll help. Kind wishes, Lily

Try to think about how you can become a care manager, not care giver, to the family. Everyone needs to accept that they can’t demand all your time!