Where do I start?

[John Paphos]

This is going to be a bit of a rant... I don't really need advice, I just need to know that someone out there is listening......

My partner has multiple disabilities, both physical and mental. Sometimes he seems, well, 'normal', if there is such a thing... but other times it's so far from normal I wonder what rabbit hole I've fallen down.

I love him dearly (yeah, we're in a gay relationship, both guys), but I just get tired of the drama. I get tired of the bl**dy hospitals and doctors fobbing us off with the perennial, 'take the pills and it will go away' advice that never works. I get tired of seeing him suffer so badly and not knowing what to do for the best. I get tired of people asking if I'm his brother and when I say, 'no, partner', they do that bulldog-chewing-a-wasp face at me and assume I know nothing of caring or that I'm more interested in sex than love.

I get tired of not knowing where to start. I get tired of not knowing whether to wake him to change his continence protection or leave him to sleep and possibly leak all over the bed. I get tired of not knowing whether to wake him to take painkillers or leave him sleeping only to wake groaning in agony at 3 in the morning. I get tired of not knowing if I am helping or hindering and most of all I get tired that no one seems to take me seriously.

I just want my fella back, even if just for a few moments. Is that too much to ask?

[Myrtle]

I'm listening and I know where you are at. I'd like mine back too

[Minnie]

John,
Also listening, your doing your best. I can relate to you about the decisions
all falling on you. I was the same with my Mum. never knowing which was
the best.. you want to see them rest and relax. especially a partner.
You just ignore everybody and concentrate on your loved one.
Take care
Minnie

p.s.
( they do that bulldog-chewing-a-wasp face at me) I loved that expression.

[Struggling Hill]

Cant give you any advice John but I can listen and read. Know that you and your partner are in my thoughts. I hope things get better for both of you soon, Shirley

[John Paphos]

Thank you all... it means a lot

[Treez]

I know the feeling....it sucks! sending you (((hugs)))

[charles47]

John, I sometimes despair at the attitude carers get from certain professionals - especially health professionals...

Are you in contact with any local carers projects at all?

[Kiwigaz]

Hello John,
Well done for reaching out even if only to get a cyberhug ((((hug)))).
You are doing a great job and it is the not knowing what is best to do is the worse thing.
I know you love your partner and want to do everything possible to help but also please remember that you need time and space yourself to help recharge the batteries.
Have you got anyone you trust to be able to help to look after your partner just for a short time so that you can do something for yourself, even if it is only to pop down to the shop.
Welcome aboard the carers express, it may be a bumpy, long and tiring ride but at least you have a carriage load of support here.
Take care and hope all turns out well for you both xx

[Scally]

Great post, good to know you, and welcome to the very odd but also very nice world of carers online, where nobody gives a toss what your sex, age, nationality, orientation, race, or religion are, because we are all in the same boat and pretty much blind to all that stuff. Enjoyed your wit and wordplay, and hoping we will hear a lot more from you in the months and years to come. Rest assured you are not alone.

[no1mum]

You are definitely not alone. x x