My day.....a rant

nlj1520

As some of you may know, my son is 21 and has autism, learning difficulties and challenging behaviour.
Today (when I thought I was visiting him for us to do something together) his care manager informs me the letting agent will be visiting my son's home, there is a meeting at noon with his funding body to see if he still meets the eligibility criteria (errrr....autism is a lifelong condition and although things may change slightly he's never not going to be autistic, even the DLA people recognise that!!!) and then a possible new member of his support team is coming to visit him and meet me. !!!!!!???? What about time for my son and I just to be together? Today is the only day left this week that I can do. Saw him Monday briefly, but tomorrow I need to go to my partner's brother's birthday lunch in Southampton (partner is feeling rather neglected and his brother is brain injured) and Friday I am working in London all day.
All these visits will be too much for my son, too many people and I think we are setting an 'incident' up. This will then go on the record as my son being challenging..............but the management will have caused it. I have pointed this out to them. Perhaps they will pay for the new TV, phone, ipad when it gets thrown and broken????? doubt it. That'll be bank of mum. again.
OK so saturday I am going swimming with my son, but I need to see him in his home too. He loves me just being there with him. Next week is looking stupid busy too.....and I am going away shortly after that for a week.
I have asked the care manager if the letting agent can be put off, but it may be too late as I only found all this out last night. Also letting agent may not understand why and think we are trying to hide a disaster in the house. Am thinking of not going to the birthday lunch, but as it was re-arrange3d to suit me, that will !!!! partner off.
AGGGGHHHHH. It's a damn good job I am self-employed and semi-retired, how would I manage if I was say a teacher or a nurse? Carers are obviously not allowed lives.
Rant over, thank you for listening.

And if anyone is in a similar position, please advise how you manage. thank you.

esmf73

Sorry, can only agree with your statement that carers aren't allowed lives. Have found that to be the case too. They seem to think that the £50 or so a week carers allowance is enough to live on! Good luck.

summerof0763

awh (((hugs))) its not easy when you try to do your best, I would contact letting agemts and explain your fears, see if they will rearrange, x

SmallL

I really feel for you,my aunt cared for my grandmad for over 7 years and also her husband at the same time for 3 of those! Sadly both have now passed and she feels lost as caring is all she has known for the last decade!
I really admire anyone that cares for a relative, it takes much more than love to do it.

Best wishes x

Prothet_of_Doom

summerof0763 wrote: »

awh (((hugs))) its not easy when you try to do your best, I would contact letting agemts and explain your fears, see if they will rearrange, x

Demand that they rearrange.