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New to posting in this forum - Carers UK Forum

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Hello, I am also new to posting on the forum, but have regularly read other people's posts. I too am fairly certain that my husband of many years (over 40) has Aspergers. It wasn't until I sought counselling and described my life with him (the encyclopaedic knowledge of mechanical things, his complete self-centredness, unable to see anyone else's point of view, meltdowns) AS was mentioned, this was four years ago. He is completely unaware and therefore undiagnosed. I don't really see myself as a carer, as, before he retired, he worked continuously for all his life and supported us all and I appreciate this. However, my counsellor explained that he relies on me to help him navigate social situations that he is not comfortable with and to deal with "things". Anyone that is in a relationship with someone with AS will understand the challenges. My whole life with him has been arranged around him and his needs and, for the most part, I have been happy to accommodate this. One of the downside is the loneliness and isolation that I feel, as if no-one really knows, they all think he's just a bit difficult at times. He acknowledges that he is perfectly content in his own company, but there are a few things we enjoy - eating out and going for walks - all on his terms, though. Through the counselling I now understand that I need to look after myself and to turn to family, friends, workmates for what is missing from my relationship. The other downside is that he is completely unable to accept it if I not only disagree with him on any point, but if I just ask a question. He has fallen out with most people in his life and spends most of his time in his "den" on the computer or on his allotment. I have thought long and hard about the prospect of leaving, but he is very dependent on me for lots of small things (he isn't domesticated) and is completely trustworthy, loyal and faithful. I understand that AS is a different way of seeing the world, but I would appreciate it if someone in a similar situation could advise me on ways to improve my quality of life. Luckily I still work, but I retire in a couple of years and definitely need some plans.
Only time for a very brief reply - you could be describing my husband!!

Very characteristic.

I just wanted to say, for now, that despite all the above as you so vividly evoke (!), he loved me to his dying day - he just found it hard to show it very well.....his FEELINGS were there. It was his ability (or not) to EXPRESS them that caused me grief in the 'early days' of our marriage.

I did manage to 'train' him quite a lot, though - maybe his Aspies was milder - but he 'mellowed' a lot in middle age.

I could also 'tease' him - he had a sense of humour, and that was a Godsend.

When you ask questions, is it for him to 'explain' something or are you 'challenging' him? Or do you just want to know what he wants for dinner, or if he's dealt with the gas bill? what does he not like?
Hi Jenny

He doesn't like any questions at all - he just feels put on the spot by a direct question, whether it's to ask what he would like to eat, or (worse) how he's getting on with a task. He also doesn't ask questions, thinks it's intrusive, and doesn't have a lot of interest in other people, including me. Through counselling, I now understand that I need to get on pursue interests, travel etc independently, which is what I'm finding difficult to think about. I need to "find myself" in all of this. I have been with him since I was 15, so I can't refer back to a life before him. Jo
Hi Jo
So it's building a bit of life for yourself that's the problem?
May I suggest you start small and just try one thing, perhaps an exercise or dance class, or a book group, or local WI for example?

It sound like hubby will be quite content in his own way while you are out, and presumably has a liking of routine, so regular hobby or meeting would be good all round

Have a think what you'd like to try or do and make a list. With retirement looming - you will have a lot of hours to fill
Jo, since my husbadnd died I have travelled to Majorca, Menorca, Malta and Crete on my own. Thompson holidays are well organised, but I've found them quite lonely experiences.
I now choose hotels near a sea front promenade which I can walk along.
In Crete I stay in a single travellers only hotel, a really different friendly experience. I've been there seven times, next year one of the friends I've made at that hotel and I are going on a Greek Island hopping holiday before going to the hotel in Crete for the second week.
You don't have to be single, it's not a dating holiday, just a single traveller. My friend is married but her husband wants to stay at home.
You struck a chord with me as my Mum was very much like you with my Dad. I don't know if AS, could have been. He certainly had mental health problems and was extremely selfish. She ended up caring for him for other reasons and he refused ALL outside help and it ground her down physically and mentally. And basically she never had a life for herself. She now has Alzheimer's herself, which a feel really strongly is at least part caused by the social isolation her life with him caused as she developed it at a relatively young age and there is no history of it in her (long lived) family.

So I would urge you to find a life for yourself. I did to my Mum and she never really listened and just bowed to him for an easy life.

I know it is daunting. But you are important and you deserve a life. But start with baby steps and do one thing at a time. What is the ONE thing you would most like to do or be involved with? Start with that and build from there. You can do this.
Jo, does he 'give or receive affection' - eg, hugs etc? He may well not 'offer' affection (ie, instigate it), but does he 'receive' it? ie, can you sit on the sofa together and 'snuggle up', even if it's you doing the snuggling?

That's SO important in a marriage!

(By the way, you don't mention children ???)

Definitely 'max out' the few things he does seem to enjoy doing with you - my husband and I used to go on walking holidays (he basically spent a great deal of his life getting away from other people! His main exercise was swimming - I used to say it was because no one could talk to him while he was ploughing up and down a pool with his head under the water!!!!!).

Giving him 'space' is vital, isn't it? They just 'can't cope' with others around them 'nagging' at them (maybe that's why he doesn't like being questioned?!)

Yours does sound significantly more 'extreme' AS than mine was, though. How did your husband cope while at work, where some social interaction MUST have been required, however minimal? Do you feel he had to make an effort with his colleagues, which was a strain on him, so when he came home he 'relaxed' by not talking and heading for his man-caves etc?

DO you talk together about anything at all? Do you have conversations? What about when you go out for meals together (that's great that he at least likes that!)

Overall, it's a question of 'making the most' of what he DOES 'put out' for you, and, as you have said, appreciating the 'good side', eg, the steady provider and faithful husband and so on.

But then, as you are now so clearly wanting, making 'another life' for yourself as well. Like you, I basically had to accept that I wanted more of a social life than he did - so I went off to dinner parties without him, I went to the theatre and cinema with chums or colleagues etc.

Do you find that alcohol helps at all with him?!! I definitely could see that after a few beers my husband COULD start to 'socialise' - but even the few family gatherings I got him to with my bro and SIL etc, what he seemed to enjoy was sitting at the dinenr table, sipping his wine, while everyone else 'yabbered away' - he was 'following' the conversation but not really participating. He usually just headed off to bed when he'd 'had enough'.

Why do you think it has taken you to this point to get counselling (well done by the way!), and to decide to make an 'alternative parallel life' with your own activities? Were you in full time work, full time mumming, or what? Or do you think he has got even more 'reclusive' with age, or just that you are noticing it more now that he doesn't go off to work every day? Is it retirement that has made you say 'I need more'???
Many thanks for all the replies.

MrsA - yes it's building a life for myself that I need some pointers on, particularly considering my upcoming retirement. I have joined a community choir, which is great, but need to look at other activities. My husband is happy for me to be out doing things without him, which is a plus.

Bowlingbun, travelling alone is not something I have ever though much about. I'm rather envious of couples who have retired and are using the time travel. It was something I would have liked, but doubt if it will happen. We have been abroad for holidays, but my husband is not keen to do this any more. My counsellor advised me to seek a travel buddy.

Sally - yes, think I have got into giving in for an easy life. Through counselling, I understand that I need to branch out. Your advise regarding thinking of one thing to begin with is good advice.

Jenny, yes he is quite affectionate! We don't tend to sit together on the sofa, unfortunately- I sit there on my own and he sits in hie "den". I don't really mind, as I've got used to it now and I get the remote! We do have children, three in their thirties and forties and two fantastic little grandchildren. We all see each other regularly and they keep me going. I also have an elderly Mum (87) who is independent and healthy at the moment, but I am quite apprehensive about her care in the long term. We do try to enjoy shared activities as much as possible and he sees the importance of this. He definitely doesn't like crowds, in fact he prefers meeting people on to one. Regarding work, he usually worked on his own as a driver, didn't go in the "mess hut" with the other men at lunchtimes and, in the last few years before he retired got on quite badly with workmates. I'm sure he's always used his "man cave" as a place of escape from the hassle of work. Conversations are usually him talking at people, me included, often about whatever is on his mind at the time - Brexit, a particular piece of machinery! Alcohol does help and over the past few years we have started sharing a bottle of wine with a nice meal, candles etc. I went for counselling 3 in my 30s and 40s, when the children were teenagers and he was particularly nasty. He was fine when they were tiny, but the older they got and "spoke back" the worse he got. It was awful when they were older teenagers and his relationship with them deteriorated so much that I considered leaving. I was relieved for them when they made their own lives, but very sad that they couldn't have a lovely relationship with their Dad. I went my most recent counselling, where AS was first mentioned, because of an issue that I was particularly unhappy about (unrelated to his AS) and that I didn't feel I could talk to anyone about (I've rarely discussed him with family or friends). It has been great to find a counsellor that understands AS. My husband has definitely got more reclusive with age and since retirement, he just says he can do what he likes now and doesn't feel the need to socialise. Sorry for going on for so, but it's good to find people with an understanding of what it's like to live with an AS partner.
So
he just says he can do what he likes now
What's sauce for the goose is sauce for the gander1
in other words if he is doing what he likes now, then you could be doing what you like now :)

Choir singing is good as it concentrates the mind away from home issues and is a shared experience which will grow into friendships

So what other things would you like to do?
Send me a private message and I'll tell you more about my holidays. The first time I went to Crete was probably the first time I'd really found myself again, after the death of my husband six years earlier. I had lots of fun and laughed again.