Not sure if I’m even a carer. Father with early dementia/ multiple stroke survivor- living independently (with daily carer support) 500 miles away. I manage finances and some healthcare/ social care needs; my brother, who is nearer, does so much more.
I also have autistic adult son (almost 29) with no intellectual disability but with complex MH problems which have limited his life. He lives independently on UC and PIP. He is frequently in crisis. He rejects/ ignores us, or pulls us back usually following an overdose. Sometimes he allows us to advocate and we secure support (therapy, etc) but nothing seems to help. It’s impossible to know what to do. So unbelievably painful as a parent- he often rejects, criticises, sobs, ignores (sometimes for months in end) I never know when the next crisis is coming. I can never switch off and am becoming afraid to go away since I was looking in on my dad last time A and E called this year.He struggles with prescription drugs and alcohol misuse in trying to cope with anxiety and depression. It impacts on my working life, on my relationship with my husband, and on my other two sons. No one seems to understand what it is like to never be able to switch off, even if you aren’t actually doing anything other than worrying why they have stopped responding to any initiatives to connect again, and you see the whole cycle starting over. Can anyone relate? I feel so alone.
Welcome to the forum. Most definitely a carer. There are various definitions but the one I think is most appropriate is that looking after someone else is seriously affecting your own life. At one stage my husband and I were caring, in different ways, for a son with severe learning difficulties, and all four parents, all entitled to highest disability benefits but one too stubborn to apply! Sadly, my husband died of a massive heart attack in his sleep soon after his dad, as I was recovering from kidney cancer surgery. I’ll always believe the stress of caring killed him, at 58.
Can I ask how old dad is? If he is under pension age, and his early dementia is formally diagnosed, he should probably be entitled to highest disability benefits, as under pension age there is an element for needing support for getting out and about. Is he getting exemption from Council Tax?
There is another mum on the forum in a similar situation with her daughter, who will be along later, I’m sure.
My son, now 46, lives in a privately rented flat with carer support, about 15 miles away. Fortunately he is very settled and keeps his flat like a show home, but I’m constantly doing things his staff can’t or won’t do.
Every year I go to Greece for 2 weeks, to get away from it all, but my first night in Corfu I had a nightmare about my son so awful I was afraid to go to sleep again. I’ve even had his staff email me about, of all things, his lawnmower cable, every night for about 5 days ! in the end I copied them to Social Services and told them to shut him up!
Do you get any support yourself?
Thank you for responding to me. Dad is diagnosed with dementia; fortunately is has been a slow process, but he had already lost some intellectual capacity from strokes (e.g, he can’t read it do numbers anymore, he needs printing to remind to change clothes/ have a shower etc, and his language is affected). He’s 91, with other health issues, but he seems happy in himself most of the time. He has a good pension (I think he also gets attendance allowance). We have carers coming in morn and eve, and I sorted a local agency to clean the house/ change bed linen/ have a chat etc for an hour a week.
It sounds like you yourself have been through so much- thank you for sharing your story, and I’m so sorry for the loss of your husband, and for the health and caring challenges you are facing. I understand about never being able to be “off” and about awful dreams for cared for adult children.
I can relate to the fear of going away- I want to have a holiday as I have been completing a doctorate/ retraining late in life, along with treatment for breast cancer and work etc- I’m so so tired. Twice he has OD’s when I’ve been away. It has had a significant impact on my ability to work/ study and work are not always supportive.
My husband is supportive and helpful, and I have a couple of friends I can talk to if it gets tough. I just seem to be carrying so much fear and worry all the time for my son’s future. I am afraid he will take his life- maybe miscalculate on an OD- and I grieve the loss of our relationship, and all the potential he had. He does not deserve to suffer how he does, but sometimes his behaviour makes me feel so angry. I also cannot shake the feeling that I have not done enough, or that he’s right, and we are responsible as parents for all his issues, and I can never put it right for him.
I struggle to get on with other things in life sometimes (work, study, social stuff, exercise). I am so worn out and still have some health issues to manage.
If dad is under pension age, be sure to check his disability benefit to see he’s getting the highest rate. If you are managing his money you need to become his DWP Appointee, it’s an easy process.
BIG BIG BIG hugs @Ann55QA…Welcome to the forum. Excuse me saying but Holy Moly you’re in a non-stop hypervigilant state from what you’ve shared
I’m going to tag @Ula because there are similarities to her situation with her daughter - different in several aspects and same in others…that sounds vague but I don’t want to misrepresent our lovely Ula.
You’ll find some light relief and some of Ula’s posts on Roll Call where we all try to share light (and dark) humour of our everyday lives - https://forum.carersuk.org/t/roll-call-july-2025/127446/510?u=victoria_1806
ALL to say you are definitely NOT alone 
Bravo on getting all that sorted for your dad. It sounds like your Dad has vascular dementia, like my Dad had. My dad suffered from various illness but the congestive heart failure induced minor transient ischaemic attacks, strokes and other heart issues that led to a big hospitalisation and after it he was diagnosed with dementia
I hope your breast cancer treatment has gone smoothly and is near completion? Sending you best wishes and healing vibes. It’s tough to go through on its own but with everything else geez…and I saw how you just slipped it in there between retraining and work! haaaaa you can’t slip BIG deals by us carers!!
You sound burned out and I can attest to how constant adrenalin, cortisol being in a hypervigilant state can wreck your sleep, body and grinds on the soul…so of course you have all these horrible cruel inner critic messages tormenting you and torturing you. UGGGGHHH
But hon - you’re only a perfectly imperfect human…you’re not a God or Glinda with a magic wand…your beautiful son is a human too, struggling and having issues, but still a beautiful soul that needs more help…and sorry to say but you cannot control life for him…it’s not how life works…
You’re doing what’s humanly in your power to do and probably much much more ie. the best you can possibly do and somehow you need to reconcile with ‘only being human’
When people are in crisis it’s easy to blame others, and it sounds like your son is in crisis and lashing out blaming you and yor husband. I’m not a therapist I’ve no therapy help to offer. I’d only say that no one can make everything ‘right for him’…
I really feel for you
Big hug
@Ann55QA Can add very little to what @bowlingbun and @Victoria_1806 have already said but you are honestly not alone. It is very supportive here and has been a total ‘life saver’ for me at times.
Thank you for your kind words- it is such a relief to hear people “get it”.
Breast cancer treatment went well (end of 2022 through to Sept 2023- mastectomy, lymph node treatment, chemo, radio, and a really cool
Reconstructive where they made a breast out of my thigh!) Only hormone therapy now. Brain scan last week as I had a couple of falls and was generally being clumsy, but all clear- I’m just knackered and burnt out! I’m getting an injection to settle some bad back pain and it resets your sympathetic nervous system- sounds just what I need.
Honestly, I’d give anything to sit with someone and just breath a sigh of relief with them that there are other people out there in the endless cycle of fear that complex MH issues bring for families and carers. This year has been very tough, and I honestly get to the point where I feel I’m always making excuses for myself- not being able to keep up with others on my course or at work, for example 
Thank you so much everyone. I’ve never used a forum before- unsure of how it worked, but so glad I reached out. You’re out there in the trenches with me, I can tell.
Thank you for making me feel less alone.
@Anna_2210 Holy cannoli you’ve been through it…SO good to hear your brain scan is clear - that must’ve been a real-scary ‘What if’ to have to navigate through given your falls…and basically I’m glad you know that you’re burnt out and knackered…you’re obviously NOT delusional and know you need to rest it’s just feeling impossible, I’m sure…MORE HUGS!
YUP we all know the ‘BIG exhale’
Try connecting live - I’ve not managed to do these but there are lots of good feedback on Carers UK Cuppas Care for a Cuppa | Carers UK for live chat
Or mobilise: https://www.mobiliseonline.co.uk/cuppa
The Brain charity supports carers too: Get help - Support for neurological conditions | The Brain Charity
Also MIND https://www.mind.org.uk/information-support/guides-to-support-and-services/seeking-help-for-a-mental-health-problem/mental-health-helplines/
BUT the folks I’ve linked with before who are amazing are Maggies centre - I hope you already know about them Our story | Maggie's
ummm and can I just really emphasis hard you are NOT making excuses for yourself you have SO much more on your plate than others on your course!! I’m sure some people would’ve asked to freeze tuition or defer…the fact you’re doing all of that on top is just amazing AND scary!
Somehow - having a 24-48 hour break, not hypervigilant, no course work, …I’d say sit by some water or go for a walk or just be out of the current frame…You need a recharge. You’ve burnt the candle at both ends, in the middle, all around and there are only a few wisps of smoke!
Thank you for all of the helpful info. I know I need to connect with people, so this will help, and maybe it will lighten the load a bit 
Hi @Ann55QA Welcome! I can’t add much at this point to what has already been said. Just know you are not alone. 
@Ann55QA Don’t worry. @Chris_22081 meant “not alone.” Sometimes we type too fast round here and end up mistyping worms! 
So sorry @Ann55QA - put it down to feeling drained and not proof reading. I will not punish myself - I mean NOW punish myself 
Thanks @Charlesh47 for helping me worm my way out of that one!!! 
@Chris_22081 It can happen to the best of us. @Ann55QA You are honestly not alone - the empathy and support here is amazing and has been a ‘life saver’ for me at times. Please consider joining Roll Call where we share the ups and downs of caring and yes some humor, usually black’ tends to creep in.
I will try- I’m still working out this forum lark!
Black humour is definitely my thing..! 
Top right of this page there are three horizontal lines. Click on those and it opens up a lot more!
I think it’s an absolutely useless idea but we are stuck with it I’m afraid!
@Ann55QA You really would slot in wonderfully. I do not sleep well but looking at the Forum ‘Roll Call’ really helps give me the strength to get through the day. We can be a little naughty…