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New girl - Carers UK Forum

New girl

Tell us a bit about yourself here.
Hi. I am new on here. I having been caring for my husband who has ASD and ADHD for the last 19 years even though I didn't realise that is what I was doing because he was only diagnosed earlier this year. Part of the assessment process made us realise just how much of what I do is not 'normal' for a relationship. I guess the main reason I am posting is I get so lonely and isolated. In public my husband can seem pretty fine because he has good ways of masking his problems but at home it is a different story and I feel like no-one understands what I am really going through. The only person who really does is him but due to his condition he often can't talk to me. So I was hoping to find some other people who might understand what it is like when someone else's needs always have to come before yours and how as much as you love that person sometimes it just sucks!
Hi Katie,
Welcome to the forum.
So I was hoping to find some other people who might understand what it is like when someone else's needs always have to come before yours and how as much as you love that person sometimes it just sucks!
Well you are in the right place! That sums up being a carer. You will find as you read the forum, our situations vary widely, but, the problems that we are experience we often have in common.

Melly1
Hi Katie and welcome.
I hope you have discovered the Autism UK site https://www.autism.org.uk Not only does it have lots of info but also has forums. The carers one is mainly parents of children but there are some adult carers on there who may have specific tips.

There are some things that are common to all carers, the most important being that carers have to care for themselves, and that means ensuring you have some balance in your life. I am concerned you don't seem to have any breaks or respite. You are still a person in your own right, as well as being a carer.

The typical Aspie has a need for order and routine so could you build in some 'me time' for you?
I married an engineer who loved anything mechanical, whilst I was keen on sewing, fabric engineering. So we each understood the other saying "just a few more minutes"!
If he needs his own space, and isn't a great talker, that's fine, but it does mean that you need to do things that you find fulfilling on your own. Then you can enjoy your time apart, and hopefully time together.
Otherwise, you end up divorced, like my sister in law always trying to drag my brother away from his vintage motorbikes, which he used to help him chill out from his work as an aircraft engineer. He just wanted to chill out, and in the end it caused so much trouble they divorced.
What irritates you most about your current situation?
"So I was hoping to find some other people who might understand what it is like when someone else's needs always have to come before yours "

Er, why do your husband's needs always have to come before yours?

You've been with him for nearly two decades! Have you let him 'rule the roost' for all that time?

I speak only as someone whose husband had, with hindsight, very probably mild Aspergers (as in, when I married him in the 1980s no one had really ever heard of ASD 'in public' - ie, obviously autism was known to docs and affected families, but the idea that 'ordinary people' might be on the spectrum at all was just not publically known at all). But all the descriptions of Aspergers fit him totally!

And part of that, sadly, is a complete 'indifference' to what other folk are going through. I'm not suggesting your husband is deliberately cruel or callous or selfish - he just won't notice YOU 'giving things up for him' or 'making a sacrifice' for him. He will be ,if I may put it, without 'compunction'.

In other words, he will blithely do what he wants, without considering its impact on YOU.

Forgive me if I'm totally wrong on this, I'm only 'transferring' from my own situation.

What that absolute lack of 'empathetic compunction' in my husband's attitude towards me taught me was that I simply had to ge on with what I wanted to do, and he had to lump quite a lot of it - as in, I felt he had to lump as much as I had to lump!!

There is a vital difference between 'making allowances' for the negative impact of a neurological condition on a person, and the 'fall out' that can come from it,.....and 'indulging' it.

To be blunt, I suspect you could stand on your head in a bucket of water for the sake of your husband.....and he wouldn't notice, let alone say thank you or urge you not to make such a sacrifice for him.

I do think, also, that women are 'trained' to 'look after' people - it's part of female culture to put everyone else 'first' and not ourselves. We have to fight that.

If you were someone else looking in on the 'you' you describe in your post, would you not urge the same to her? Stop faffing over hubby and do what YOU want for a change! Whatever that is!

(I appreciate I may be underestimating what you are coping with, so correct me accordingly!!!!)
Hi Katie and welcome. I feel I can relate to some of the things you're going through. Firstly, I am a carer to my elderly parents and increasingly I feel as though I'm having to put my life on 'hold'. I feel I can't do the things I want to do because I should be spending that time (and energy) looking after Mum and Dad. Things for me were improving unti recently. Now my dad is back in hospital and he's going to need even more care when he comes home.
Returning to your situation - are you confident about letting your husband be on his own at home? If the answer is 'yes' then that will give you some 'me' time to do the things you want to do, ideally mixing with othrr people . If you don't like leaving him on his own then that is more of a problem.
You don't like some of the things your husband does at home. Make a note of the things that annoy you the most and then think of a way of getting it through to him about how you feel.
Rhona, just because dad will need more care after discharge does NOT mean that you have to provide it!
Thank you to everyone for your posts. I think I have let him rule the roost a bit but over the last 18 months I have been trying to change that and do more things for me but I find it really hard. We have two boys (9 and 12) and I work during the mornings and am doing my PhD part time in the afternoons. That started as my thing for me but it is not the most relaxing one I could have chosen! I guess what gets me is he uses all his energy in going to work and then in the evening is actually incapable of doing the processing needed to help out (he is not just putting it on) and just falls asleep leaving me to sort the boys and all the house stuff. To be fair on him he had become much better about this after we spoke about it 18 months ago when he had a breakdown and had to be off sick for 6 months but recently it feels like it is going back to the old ways again. And I have repeatedly said that I would be happy for us to have less money if he worked less and was actually functional at home as the proper part of our family he can be when he is not giving all his good periods to work. But he won't. And so like tonight he and the boys fall asleep and I am finishing off chores and sitting alone unable to go out to do something I want to do because he wouldn't wake if the boys needed him or an emergency happened. So I just feel lonely and isolated. Can't socialise in the day cos I'm too busy or at night because I can't leave the house. And can't ask someone to babysit when my husband is here because no-one realises how incapable he is when he is this wiped out by it. And really not sure what can possibly change to improve things. Sorry for the moan, I'm not always this negative, it is just a hard time.
PS when I say he falls asleep he literally just lies down and falls instantly asleep, sometimes in the middle of conversations.
If money isn't an issue, why not give up work and use that as your "me"/study time? Then you will be relaxed and ready for your children, not tense.
Rhona wrote:
Thu Nov 29, 2018 3:20 pm
Things for me were improving unti recently. Now my dad is back in hospital and he's going to need even more care when he comes home.
I think it almost feels worse when you have had the hope that things were getting better!