Controlling behaviour care company problems also

My son 22 , has brain injury and autistic traits mainly his precision about time , life , facts and his agressive controlling behaviour . He has a truly wonderful sideed all and his life is has been challenging this year but I am his sole family , he lives in a house alone as he cannot tolerate others but ha24 hours care a week which he refuses a loofa the time …it’s a really long story but …I am at my wits end losing my hair literally worn out with m.e and depression …he calls several times a day and wants to know every detail of my whys and wherefore so , he won’t tolerate my fiancé or his kids so today we have to arrange for them to be out so he can do his usual home visit …I’ve had a year of his moans and almost psychotic thoughts on what he’s going to do to those who’ve wronged him mainly care manager s …my local carers group is not supportive the leader mainly off,lads all her stuff , I have just involved a woman fro. Mencap but when I was desperate she didn’t call me back …they’ve pulled his drivers so now I drive him more pressure on me …relationship is breaking g down and am thinking of ending that because I really can’t take much more …
His pips assembler saw his money go down , his financial assets et resulted I a bill for 3,500 the walls are closing in on me fast

Hi Virginia,
I thought I recognised your name and situation and searched your previous posts. This situation has been going on for years, no wonder it is affecting your health. You have been given lots of advice, but because you are kind hearted and caring, have continued to put everyone else first. It’s time to make some tough choices: carry on as you are to your own detriment or make a stand!

Your son has his own home and care support. If he chooses to refuse the support, that’s his choice, end of. He wants to know what you are doing each day; give him a timetable, e.g. Monday shopping & laundry, Tuesday work & Zumba etc. He clearly needs reassurance, we’ll play to his precision and agree to a time each day/ several days a week when you can talk to him. Tell him you can talk to him for X amount of minutes. Use a timer, when the timer goes off, hold it to the phone and say, “sorry darling that’s our X minutes I now need to …” and put the phone down. If he is rude or abusive on the phone, tell him you don’t talk to people when they are rude, you will talk to him tomorrow or whenever the next call is scheduled and put the phone down.

Re his benefits, are you his appointee or is he in charge of his own money? Turn2us give good online advice and the carers uk helpline can also offer advice. Alternatively, call social services and ask them to assume responsibility for his finances. BB has lots of experience in sorting out her son’s finances.

Finally, go to your GP and ask for counselling to help you work things out and support you whilst you do so.


Thanks nelly , 68 views and Only your reply but very valuable thanks

68 views and Only your reply

Par for the course on this forum , Virginia.

Some threads have several thousand " Views " … one in excess of ten thousand … but only one or two contributors.

A quick tour around the forum will reveal that statistic within … a minute … some areas worse than others ?

Train spotting / window shopping … as it’s known in other sectors.

In carer circles , I prefer the word " Apathy " … " I’m all right , Jack " if you like ?

As such , we , collectively , all lose out !

( Another 32 views since posting this reply … the only one … so far ? )

Virginia, I’m sorry if you felt you’ve been ignored! Two contributing factors to that -

Firstly, it’s the Christmas holidays, and the ‘usual complement’ of regulars on the forum are ‘preoccupied’ etc, and some of us are away (I’ve been away for example), so we are ‘thin on the ground’ at the moment, so to speak.

But, more materially I think, what you describe is VERY ‘specialist’. I have no experience of autism other than very ‘remotely’ in that the brother of a friend of mine has it, and the son of another person I know. Because autism is SO ‘specialist’ it can’t be helpful if someone ‘wellmeaning but ignorant’ like me simply starts giving you advice! I would be likely be wide of the mark to suggest anything that is actually useful or workable for you.

I’m sort of assuming that you are already on forums for families of those with autism, as although there are, indeed, some members here who DO have experience of ASD etc, we are a general carers forum, and I’d take a punt that most of our carees are the elderly, with associated problems such as terminal illness, age-related frailty, and, of course, dementia.

Bearing all the above in mind, the one thing I would urge is that you do NOT sacrifice your relationship with your fiancé, nhowever tempting it might be to do so. Or were you referring to your relationship with your son?

Also, if I said to you - how happy do you think your son is ‘now’, and how much more ‘unhappy’ would he be if you drew back more from all you do for him? I know it’s a bit defeatist, but if you think he isn’t that happy now, and is unlikely to be that much MORE unhappy than he already is if you withdrew care and attention, then in a way you might as well focus on yourself more, as being less involved with him would indeed make you happy. ie, if he isn’t going to be happy ‘anyway’ then isn’t it better for YOU to be at least???

That said, of course it is INCREDIBLY hard to ‘walk away’ from our children, whatever their age, and whatever their needs…

Virginia, is the £3,500 debt his or yours? Is there anything we can help with in this respect?
Were his benefits reduced?

Hi Virginia
I lot of what I replied to Jane applies to you too

I would also say that if your boy’s thoughts are that psychotic regarding other people it may well be that he needs anti-psychotic medication and maybe approaching a crisis point. Is he under local mental health team? Does he have a crisis plan?