Hi everyone, I am currently an unofficial, unpaid carer for my two adult sons (who both live at home with us) and a carer to my husband in a way. They are all undiagnosed Neurodivergent. My husband is currently waiting for ADHD assessment but I think he is very likely on the spectrum as well as ADHD. My eldest son nearly died when he was 16 and had to have life saving surgery to remove his bowel, so has a permanent ileostomy, making him unable to work more than a couple of days a week. He is looking like he is ADHD as well, and lives in absolute chaos, forgetting to eat, drink, take meds etc which I have to keep on top of or he ends up getting ill. My youngest son is very likely undiagnosed ASD with OCD, with chronic fatigue (that I think is autism burnout). He hardly ever leaves the house and needs everything done so specifically that it makes my life feel impossible. I get no support, financial or emotional and am also suffering with stress infused chronic fatigue, fibromyalgia, anxiety, depression and trying to get on top of childhood trauma. I feel in such an impossible situation, as we donāt fit any criteria to get help, and my sonās arenāt prepared to get diagnosises. I spend all my time looking after, planning and managing them all. My husband wants to be supportive but he is very emotionally unstable and so mostly just makes things worse for me. I think I am writing this as I just want to feel that I am not totally alone, that maybe somebody somewhere will understand.
@McCarer you have come to the right place to get support. When I felt alone I came here and was able to feel connected to others who understood. I can come here to rant, vent my anger and frustration and also there have been some good tips on coping.
You certainly have your hands full, some here will be able to ask the right questions to help direct to where you may get more support.
You are not alone, welcome to the forum and sending hugs
@McCarerā¦.welcome to the forum. Youāre handling an awful lot, Iām glad youāve reached out. Youāll find this a good place to be able to have a chat and say how youāre feeling. Sending hugs your way.
Welcome from me too.
You do NOT need to have a formal diagnosis for anything to qualify for benefits.
What matters is the amount of support they need.
I have very bad arthritis, so when my son had to have a PIP review, hand written, I knew it was impossible, so I asked DWP to send me a āVisiting Officerā to help. (My son canāt read or write due to brain damage at birth).
He filled in the form for me, and several times suggested that my son needed more than I had thought.
Whilst your family say they do not WANT help, they certainly NEED it!
What would happen if you were taken ill suddenly?
What do they think will happen when you are no longer able to care for them ever again?
At very least, I suspect you, as carer, need someone to help you keep the communal areas clean and tidy?
Three people to care for is simply too much for one fit woman, even more when you have so many health issues yourself!
What would YOU like most of all?
(Iāll be back later, need to sort out some tea for the family).
Hi @mccarer. Just a quick āfly byā to welcome you and let you know you are not alone and others are here who understand the pressures.
I donāt have experience of ADHD, ASD and OCD but I do know what itās like to be in the deep end and floundering. Iām not quite at the point of burn out right now, but certainly the engine is overheating (and not just cos of the weather).
Iāve have amazing support from others here and we can all give support in different ways. Caring can be a very lonely place to be. BUT you are nor ātotally aloneā. Well done for posting as youāre reaching out to a group of people who will welcome you and help. @Tiredanne has already said she has vented - WE ALL HAVE and do you know whatā¦no one gives a damn as we know its vital - so vent, scream, shout, (Iād say swear but thatās probably a bit much), and let your feelings out as the hugs you will receive will start to help.
Hereās one to start you off 
Chris
hi @McCarer Sending some hugs and love over to you. Geez youāve a lot on your plate.
First some direct help - I discovered The Brain Charity fairly recently: Attention deficit hyperactivity disorder (ADHD) - Support for neurological conditions | The Brain Charity
They have a telephone helpline and support carers of those with ADHD
They also have info on employability support that may help your son.
Youāre definitely NOT alone. Iām glad you reached out here. Thereās a large community online
Here with Carers UK meeting up online via: Care for a Cuppa | Carers UK
Youāve probably seen this/read about these organisations online - MIND always has good suggestions e.g. https://www.mind.org.uk/information-support/tips-for-everyday-living/adhd-and-mental-health/
Youāve your own health worries as well as trying to care for your family. Perhaps, talking to somone at the Brain Charity or via the carers UK helpline: Helpline and other support | Carers UK
is the best first step?!?
Aww thank you @Tiredanne, that makes me feel so much better. I tend to rant in my head but thatās not a good way to live as it just keeps going round and round with no outlet. I do think being able to rant is really important, we are all in unfair situations and sometimes it just helps to acknowledge that fact.
Thank you @Sue24, the hugs are much appreciated. Iām glad I reached out too, everybody has been so lovely. It is so hard dealing with everything alone isnāt it.
Thank you @bowlingbun, I am also terrified of how they would cope without me. I had a health scare last week and my two sons didnāt seem to expect anything to change, they werenāt happy that no washing was done for them (my husband doesnāt see that looking after my health involves him taking over household chores, he thinks itās getting me to rest and making me cuppas). I have since been trying to make plans to nudge them (very gently as they canāt cope with direct challenges) towards being more self sufficient. They are putting up a good fight though. We are seriously struggling financially because four of us are mostly living off my husbands income. My sonās give us a bit of money but even that was a fight (my autistic son absolutely hates parting with his money) My husband is now starting yet another sales job in the hope he can make loads of money and solve all our problems and will be working away three days a week for the next 3 months. This isnāt the solution in my eyes, I now have to cope 4 days & 3 nights totally by myself (he hardly contacts me when he is away as it distracts him from work apparently) and also itās our sonās finances that we need to be working on not his wage. Sorry to rant but I am so frustrated that I can see what needs doing and nobody in my house ever takes any notice, in fact they will argue til they are in a total meltdown.
Thank you @Chris_22081 I needed those hugs. It feels good to finally be talking to people who understand how lonely this feels. My husband and sons are great people but they make me feel like I am the problem sometimes. They want everything to stay the same but we are so dysfunctional as a family and nobody sees that but me. They donāt know how to give me support, my husband tries, but he is so emotionally dysregulated at the moment that it often ends up with us in conflict. Hugs to you
Thank you @Victoria_1806, that is really helpful info. I appreciate you taking the time to suggest relevant organisations. I will definitely take a look at them. Iām the only one in our house looking for help with this, my husband is hopefully soon getting an ADHD assessment but thatās only because we got to the point that I was going to leave him. It feels like I have to fight so hard to get anywhere, itās exhausting.
As I said - other carers are the ones who REALLY know what its like - others havent a clue.
Graham keeps telling me to rest and stop doing so much, but then in the next breath he moans to people that the house is untidy - yet he does nothing to help at all. He forgets that SOMEONE has to tidy and I am the only one doing that and shopping, cooking, washingā¦ Funny how they miss those things, isnāt it?
No problem about venting on here and using us all as support when you need it. You can already see how people rally round.
In quick succession, 20 years ago, I had cancer, disabled in a car accident, and widowed. Whilst my extended family always regarded me as the one who could handle a crisis, this tsunami of issues was too much, especially without my husband to talk things over with. On the verge of a breakdown, I had counselling, funded after a Carers Assessment. It was life changing, someone looking at me and my own well being, not telling me what more I should be doing for everyone else. PS my 46 year old son was incredibly hyperactive as a young child, incapable of sitting still.
Hi @McCarer
Welcome to the forum.
I look after one person who has autism and a related learning disability, thatās enough for me.
Living in a house with so many dis-regulated people must be very hard. The stress must be aggravating your fibromyalgia too.
Definitely better to pour it out than bottle it up, a brain dump can help with the cyclic thoughts.
As your husband has agreed to his seek a diagnosis he must be at least part way to accepting he could have ADHD. Although people often look to meds to help, there are lots of strategies that can be put in place to help. One of my colleagues has tags on his various belongings so he can trigger an alarm to help him find things eg keys etc
His work computer calendar is set to send him reminders eg take laptop charger home )2 minutes before he finishes work) and so on
Your autistic son and not wanting to part with much ā¦ definitely tricky. Perhaps you could stop providing so many of the things you do? So if he asks where his favourite snacks are, or why heās got no shower gel or thereās none of his favourite cereal etc - then after he has calmed down about it - you can present him with written calculations of how far the money he has given you has gone and on what and how much all these things he needs/ wants cost.
Often a big change is the best time to trigger changes. So perhaps you could tag this all on the back of his Dadās change of working pattern. Now your Dad is working away from home more ā¦ we need to think about finances ā¦.
You could engineer the running out when your husband is at home so you have back up.
These ideas might be no good for your situation and if so, then please ignore them.
Thank you @Melly1 that is all really good advice. I have just been talking to my husband again about how to tackle this subject, as usual we got nowhere. My husband is very avoidant especially when it comes to things that can come back to him in some way. My husband is quite irresponsible with money and has only recently acknowledged this so he hasnāt been a good role model to them. My husband earns the money but I have to manage it and make it last til next payday. He is like a child at times asking for things he knows we canāt afford and sulking when I say no. He keeps saying heās in no position to lecture our sonās and then opts out of the situation. Drives me absolutely crazy! He seems to be waiting for the assessment to hopefully get medication to sort his issues out, even though he knows there are strategies we can put in place in the mean time. There is such a cross over between problems with his symptoms and behaviours and our Sons, that itās impossible to have a neutral (non confrontational) conversation about any of this. When I do have a rant about how hard my life is, he gets snappy and moody with our sons so Iām reluctant to vent at him about any of this as it seems to just make things worse. Itās mad but I only realised I was a carer this year when my therapist recommended me looking for carers support lol. I will have a good think about how I could implement your suggestions as I do think the tying changes to their dadās job could be a good way of doing it.
Aww @bowlingbun that must have been an absolutely horrendous time for you. I also had therapy this year and it does make such a difference somebody actually giving you permission to see yourself as important too. I think we probably all lose any sense of ourselves as we are so focussed on other people. Iām glad you got āsomeā support when you needed it. Iām sure it was the bare minimum that you got and deserved much more, but some is better than none.
Yes @Chris_22081 I am realising that too. You guys on here have made me feel so supported, Iāve never had that kind of experience before. Itās made me feel quite emotional. I am so used to everybody in my life just seeing things from their point of view and expecting me to just carry on regardless of what is going on with me. Itās funny how husbands think we can rest when nobody else takes over our responsibilities, ājust sit and relaxā, āhave a cup of teaā, āstop rushing around trying to do everythingā! Well yeah I am rushing around, trying to get everything done as nobody else will do these things, before I crash. I got back from an ECG last week and my youngest son (autistic) was just stood staring at me,bi thought he was showing concern and told him I wouldnāt get the result til next week. He looked really uncomfortable and said āNo, I was wanting you to start my dinner, I actually wanted it starting half an hour ago so can you get straight on with itā It was so upsetting! That makes him sound horrible which heās not but he can only see things from his point of view and his routines are a non negotiable to him, even if I am having a health scare
I had two counsellors. The first arranged by the local carers support worker, but I wasnāt told that it was only 6 sessions. Just as I was opening up, at last, to him, I was told Iād had my quota and he was leaving anyhow! So frustrating. However, by then Iād received my husbandās life insurance and could afford to go privately, later funded by my Carers Assessment needs outcome, after a battle. Helen, my new counsellor, was lovely, being female she understood much better. She supported me as mum was dying too, it was great having someone to offload things to, who wasnāt involved personally with any of the other people. Social workers seem to have a hidden agenda of trying to manipulate you into doing things rather than supporting you to say no, thatās just too much. My son with learning difficulties is always focussed on himself too.
I had to laugh when you said about being told to sit down and have a cup of tea instead of rushing aroundā¦ WHEN do we have time for pleasures like that? If I ask āwhat would you like for teaā I may get āhow about salad - thatās easy isnāt it?ā My muttered reply of āeverythingās easy for you as I am the one doing the workā didnāt go down very well. Mind you thatās cos when I make a salad there are about 15 different ingredients, so I donāt do myself many favours. Even if he says āhow about fish and chipsā, itās ME who has to drive 16 miles round trip to get themā¦
See what I mean about this being a place you can have a moan? 
Graham often tells people he is worried about MY health, but I am sure some of that is because he worries what would happen to him if I took seriously ill.
Try to keep smiling ! (ducks quickly)
I totally understand where you come from: Iām in similar situation but I am only caring for my son. Although he doesnāt see it like that: he has autism and adhd and brain injury and Iām chronically stressed and exhausted and have no life other then doing stuff. I donāt mind but he also suffers with episodes of psychosis since TBI and itās draining the same stuff itās like a science fiction movie but also can be very scary. I get no help nothing no help from mental health when I ask for it for him: I think I need mental health support right now ! But wonāt ask for it or they will think I shouldnāt be looking after him and there is no one else to do it. Itās like a same day same stuff over and over and over again. I feel how you feel I really do and I have chronic illnesses also. I have also become super sensitive to noises now and people around me. Iām so so tired. No career no no friends no life nothing just caring.