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.
I think it almost feels worse when you have had the hope that things were getting better!
Because I’m keeping hold of my job in case he needs to give up his! Which I guess definitely falls into the category of letting him rule the roost and putting him before me. But on the other hand I don’t want to be 100% dependent on him for money in case something happens.
Thank you. I have discovered autism UK but as you say there are fewer spouses on there and often they are very pessimistic about the changes of asd/nt relationship working while I think it can work and has been working in our case, we just need or figure out the next step. But you are righr. I am worried I don’t have any breaks or respites as well.
Hi Katie
Some ideas for you to think about, no need to reply.
Stop trying to be Superwoman. Your husband’s condition is lifelong and you are burning out already. You are a carer, a worker, a mother and a student and its unsustainable. Admirable but unsustainable.
So look at priorities, could you perhaps get a cleaner in , or look at getting rid of some of the chores, the garden, the washing. Some things just don’t need doing, lower standards can be a stress reliever . Dust doesnt kill
How much longer on your PHD? Could you look at doing that over longer time to ease stress perhaps? And use time spared as ‘me time’ in a more relaxing or healthier way?
So if hubby won’t lessesn his hours and up his efforts at home, then use his money to pay for help.
In time your studying will finish and your boys will grow and do more, but you have to look after yourself now
A new household Rota involving all might help too.
Underneath it all I think you’d Benefit from some counselling to help you discover you in all this, to help you find a you that gets the balance right for you and your family.
Kr
MrsA
Counselling was life changing for me.
I was newly widowed, newly disabled, son with LD and a housebound mum 6 miles away and running a national club and writing a club newsletter, 20 sides of A4 every quarter.
Counselling somehow gave me permission to slow down, to stop running round everyone, and to set priorities. It made life so much easier, and nicer too!
May I say that with two children, the priority has to be them, not your husband, or you? It sounds like your husband’s condition has ‘driven’ the family for far too long, setting priorities and everyone has to ‘fit in’ around what HE wants (even if he can’t cognitively understand that, because of his ASD and the ‘adverse effects’ that has - eg, being ‘out of it’ all evening).
If it truly is impossible for him to change ANY of his adverse behaviour (and I don’t mean that he is ‘unwilling’ I mean that his non-neurtotypical brain makes him cognitively incapable of changing) (ie, he’s not ‘selfish’ he’s ‘out of control of his own moral decisions’) (eg, to sacrifice some of his work time to family time/wife time) (if, if if that is so!), then I think, for now, like it or not (sigh), as ever YOU have to be the one to ‘adjust’…
This isn’t fair, but then, I guess, were he say, in a wheelchair, then you would have to ‘adjust’ in the sense of being the ‘mobile’ person in the family. It would just be ‘part of the deal’ in that marriage…
Whilst I congratulate you wholeheartedly on your PhD studies, unless they are directly feeding into immediate post-doc job prospects that would radically change your family’s fianances, then they are not an absolute priority in your life…not compared with your sons.
Sadly, it’s difficult enough for your sons growing up with an ‘affected’ dad (I’m not going to debate whether ASD etc is or isn’t a ‘good thing’, only that it is a ‘different’ thing from ‘most dads’). (This would be the same if he were in a wheelchair, so I’m not saying it because it is a ‘mental’ thing!). Like it or not, you do have to do what you can to ‘compensate’ for them in that respect.
In the end, their childhood is short - your older one will be off to college within five years, and your younger one in less than ten. They will be ‘gone’ from your daily lives. Is not then the time to pick up your studies ‘for yourself’?
I don’t say this lightly, but, in the end, when we become parents we can only do so on the basis that our children MUST take precedence over our own wants etc etc. As you will one day find, the ‘empty nesting’ period lasts a LONG time (until grandkids finally appear!).
I do apologise if this appears to criticise you when you are already under pressure, and I would say exactly the same thing if you didn’t have a ‘different’ husband!
But it does seem to me, on the surface, that the ‘most expendable’ item on your ‘over-busy’ agenda is your studies - even if, sadly, that is the ONE thing that is keeping you sane! Could you at least ‘slow down’ on them as Mrs A asks?? PhDs are usually pretty time-flexible, so I would hope that might be so.
And I also agree with Mrs A that if your hubby INSISTS on ‘over-working’ then use that ‘over-work’ element of his salary to pay for help in the house …or, even better, save for rainy days so YOU can maybe cut back on work as well.
I guess, in the end, my recommendation boils down to ‘giving up’ more on your husband (because it’s stressing you out!), and doing as much, much, much as possible with your boys - as THEY need you now, but won’t in years to come. And you won’t have them either in years to come…they’ll be off on their own lives.
And I also agree with the suggestions for YOU to get counselling. (The only time I did this in my life was when I had to go back to work with a toddler in a nursery, and absolutely NO ‘me time’ at all - I nearly cracked. Counselling helped me see the wood for the trees, and on the back of it I ‘negotiated’ - with my husband! - a day off work AND child-care a week. That was my ‘one day weekend’ entirely to myself. Oh, and I got a cleaner. And my sanity back!)
Thank you all for your honesty. I know I need to hear some of it. I want to stress that my sons absolutely do come first, always, and that is why I am so strung out - it is always them, then him, then me in any odd minute that is left. I never work or do PhD stuff when they are home, it all fits in the school day but I guess my stress is impacting them too. There are definitely things to think about in using some of the money to get support for household tasks and drawing boundaries around what I will do for him. I keep wondering about giving up my PhD but I have worked so hard for the last three years and am in the final writing up stage so giving up now seems such a waste. But I think what all of you are saying (and my counsellor - I have been seeing one and it was her that suggested I try going on forums for some help from the feelings of isolation and lack of understanding of friends) is that I need to consider my priorities and change something as what I am doing is not sustainable. Which I guess I knew myself but most of my friends and family just don’t get why I can’t go on as I am and perhaps I needed validation for my own wish to change things.
I say go for the PhD. Why should you give up something you want to do and get enjoyment from in order to be a better parent for your sons when you would probably be a better one in the long run if you don’t give up your projects? I also reject the suggestion that your PhD is only of value if it can be monetized! Personally I regret doing an inferior PhD but that’s me.
I thought perhaps slower or less rather than giving it up as the self worth when completed would be sooooo good, but not if it’s adding too much to the stress now
Kate, have a look at some of your self imposed 'rules ', and see if one or 2 need adjusting. I’d really like to see you with a little bit of fun, or me, time just every so often. Your wellbeing is as important as everyone elses in the family too. You need to be carer to Kate as well as to everyone else. Can you rope in grandparents to do school run just once a week, or have kids for weekend once month for example. Or you having a weekend away to do what you want?
Many of us have learned the hard way about being overstretched and suffering CLOCS, clapped out carer syndrome and can recognise the signs.
So pleased you found the forum in time 
A couple more thoughts
For every 4 afternoons spent on PHD, spend 1 afternoon going for a walk, or a run or a dance class, or moochjng round shops, or just having a coffee out. Prepare to spend the first ‘hooky’ afternoon feeling guilty and/or numb but then revel in the ‘naughtiness’ of time just for you
Secondly download an app called “Insight timer” . It has 10s of thousands of meditations. Find one, 10 minute one you like and listen to it every day for just 10 days. It really helps. I thought it was nonsense when first recommend to me but it works. I don’t do it everyday now, but do do it when things start to feel too much again
And listen to this poem as often as you like/need
Xx
MrsA
If you are torn between working and your PHD, and afraid that at some stage your husband might give up his well paid work (why?) then surely it is better to concentrate of maximising your potential in the future, rather than doing a lower level job now.
I suspect you may already have met Maslow’s Hierarchy of Need.
Completing your PHD is important to you, it would be a huge achievement to finish, if you don’t, you will always regret it.
There is also the “pure escapism” element to studying, well there was for me anyway. Before I studied for my degree as a mature student I was seen as the family dogsbody, a useful pair of hands to do what others wanted, unable to work despite good A levels and work experience, because I had a disabled child. Mum had a hip replacement, and expected me to care for her. Sister in law had post natal depression, brother working abroad, I ended up looking after her baby when she went home to her mum in Egypt with her older son for four months!!! Escaping this was my major motivation to study!
For one day a week I could be the academic “me” at college (special mature students course) and at home I could abandon the housework or get it done more quickly, so that I could spend time reading interesting textbooks, forgetting for a while that I had a disabled son.
What I’m saying is that YOU matter too. Your dreams are every bit as valid as your husband’s. Your children will grow up one day. What do you want to do then?