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My husband has Aspergers - Carers UK Forum

My husband has Aspergers

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Hi, I'm new. I'm married for 35 yrs and my husband has AS. I find life is often lonely and stressful. I struggle trying to maintain the house and have to pay people to do most things now. We have a daughter and a grandchild. It's hard to know what to say. It's like trying to squeeze the contents of a book into a paragraph. I sleep downstairs so that I can unwind and he can unwind by himself. I'm 62 and feel life is passing me by. He's a good man but this isn't a partnership. His special interest is bridge in fact it's his only interest now. I never imagine a retirement like this. I thought he had lots of hobbies but I see now they were passing special interests. This is a lonely life. Thanks for reading. Linda
Hi Linda

I think we so often let life wash past us when we are caring for someone close to us, thinking we are doing the right thing by giving everything to them. I have spent so much time worrying about my son, and what other people think of how I care for my son, I realised that I had started to lose myself. I think giving up work (whether through retirement or commitment to your caring role) also is like a bereavement; you lose part of you, your direction and your motivation.

I do not think it would be selfish of you to find your own hobby or special interest that could give you time just for you, even if it was just for one hour a week. I have recently started walking with a local group, just once or twice a week, and it has done wonders for my self-esteem. It gives me a break from my caree and gives me the chance to just be me. it isn't a lot, but it is enough to keep me going.

I am sure other people will be along with ideas of how they claw back some "self" too.

Take care xx
Hi Linda,

I agree with Steph.

Whilst your husband needs space and time to himself, you equally need social interaction and some interests outside the home. He won't be aware of this unless you tell him, due to his different way of thinking.

It can be daunting starting something new especially on your own, so perhaps start by taking up an old hobby (maybe from before you were married even?) or find out about activities run by your local carer's group. Mine runs drop in coffee mornings and different activities from laughing therapy to card making to organised outings.

A friend of mine who has recently retired goes on walks in the park organised by the leisure centre, has done various short adult education courses such as different types of cooking and is also attending sessions on tracing her family tree. On top of this she tried a reading group for a bit and oh yes, does Pilates. I'm not suggesting you do as much as her, she is a single lady and is not a carer, but to give ideas.


PS quite a few folk on here do voluntary work, which can be very varied and interesting.
Thank you Steph and Melly1 for your replies. I feel very low and am losing interest in everything. Being married to someone with a disability is very different to being a parent. I'm not saying it's harder but it is very different. He doesn't know when a conversation is ended so he will walk out of the room in the middle of one. I never know what he will say or what he will do. It's living with the unpredictable. I'm not his mother but I feel like I'm a mother to a toddler in a mans body at times. It's soul destroying living this way.
Hi Linda,

Being married to your caree is of course different to being their parent. You expect it to be a partnership.

I think one of the hardest parts of caring for S, is that it's just him and I. If we have nothing planned, then my only interaction is with S and though I love him very much, he is at the severe end of the autistic spectrum, so our interaction is basic. I still work however and although juggling work and care brings its challenges, I would go loopy if I didn't.

Are you saying you want to make the best of your situation or that you want out?

He's my friend Melly. I couldn't desert him. As to the question, I think I want out sometimes but doubt that I could leave. Who takes care of your son? I've never had a career as such and every time I've had a job I've ended up packing it in because I couldn't cope. I've also been ill over the last couple of years and had my gallbladder out in April but things still aren't right. My husband was seriously ill with sepsis two and half years ago. I think perhaps the fact that he has a high pain threshold contributed to that. It was touch and go and after a month in hospital he started the recovery process. I'm exhausted most of the time.
Hi Linda,

In which case, you need to rope in all the support you can to try and make the situation as good as it can be, for the both of you.

Would your husband consider counselling for you both, to help increase his awareness of your needs and how to meet them? I also found these links on the National Autistic Society website, they may be helpful:

http://www.autism.org.uk/living-with-au ... tners.aspx

http://www.autism.org.uk/living-with-au ... rvice.aspx

Have you had any thoughts on hobbies and interests to try?


PS you asked about S, he currently attends a specialist day college locally.
Hi Melly we've had quite a lot of counselling. It did no good at all. During the actual sessions he was interested and committed but as soon as we left it just left his head. He doesn't learn much from experience. He wouldn't mention anything that came up in the counselling from one week to the next so there was no working an any issues as a couple. I have to do all the adjusting because he can't. He offers to help with things like cooking, hanging out washing. I am going to visit my sister at the end of the month which lifts my spirits. I did have quite a bit of therapy with someone who had a good understanding of AS but that was for me. It ended a year ago. Currently I'm finding it difficult to motivate myself to do anything. Because Ive worked so little in recent years I feel like I was retired in my late 40s and have spent time doing classes and hobbies but as I say I'm feeling flat at the moment. He is also a hoarder and won't part with anything and his areas of the house are very chaotic. Every conversation has a high possibility of going wrong if I don't word things clearly. He can't read the expression on my face and doesn't understand tone of voice well. I always felt there was something not quite right about him, perhaps not a flattering description but it's felt as if I've been going insane. He now has a dx which was very hard won but at least others then confirmed what I thought was true and it was a relief to him to know what his issues were but there is no help out there certainly not for mature adults. Before his dx several so called health professionals including psychologists and psychiatrists said there was nothing wrong with him. After some years he finally got dx by a specialist. I'm glad you're able to work knowing that your S is being taken care of. My husband has funding for 6 weeks respite which gives me a break but he gets the holiday or at least two thirds of it is paid for but I feel very guilty asking him to go because he doesn't do anything wrong. He's a nice man and he's just being himself. Sorry rambling on a bit. Going back to the marriage counselling I think one of them must have told him to take a daily shower because before personal hygiene was not good. We have a dog and if the dog is scratching his ear he will say oh the dogs scratching his ear but doesn't follow up with shall we take him to the vets. I think I'm scared Im throwing away the last part of my life but I can't see I could ever leave him. I'm very fond of him. If you got to the end thanks for reading.
Hi Linda,

Going to visit your sister, sounds like a great plan. Don't feel guilty about the respite, if it keeps you sane then he is benefitting too. Maybe you always need your next "treat," marked on the calendar so you have something to look forward to.

It might be worth revisiting the counselling now that your hubby has his dx, he probably wouldn't retain all the info if it was delivered verbally, a lot of those on the spectrum need to see it visually to fully understand and retain it.

Just one more thing, it might be worth talking to your GP as being ill, worrying about hubby and being a carer is a lot to deal with and you may, quite understandably be depressed.

All the best,

Quite apart from anything else, if you had your gall bladder out in April, then you are bound to feel very tired as part of the healing process. After 6 months the scar tissue will be as strong, or stronger, than normal tissue, but until then you need plenty of rest and a good diet.
I've been a multiple carer, and had a life threatening illness, and lots of operations, it's been very tough. Your health is crucial now. When did you last have a proper holiday? After most of my carees have died (not because of me!) I now go to Crete twice a year. It's a singles only hotel, many former carers, where you can do as much, or as little as you want. Going away somewhere different is the only way I ever get a complete break. Why not think about a real holiday next year? Most of all, it will give you something positive to look forward to.