Posted by Coogybear at Mon Jul 09, 2012 12:42 pm

    I feel such a fool!
    I’m not sure why I didn’t see it? I’m a carer for my husband who’s had a nervous breakdown and my four children who all suffer with Dyslexia and Aspergers syndrome and for years I’ve just muddled through on what seems like an eternal treadmill.
    I was talking to my primary care worker on Thursday and suddenly it hit me like a brick!
    After an exhausting day repairing my vehicle, (Drive belt, petrol filter, oil filter and oil change) because I have no money to take it to a mechanic, I came in from under the car and informed my husband I had hurt my back trying to disengage the belt tensioner. I have degenerative disc disease and struggle with arthritis, but I do my best.
    I asked my son to run me a bath and he also fetched me some pain killers and a hot water bottle for my back once I’d bathed. I was completely exhausted and in agony, but managed to drift off to sleep on the settee once the painkillers had taken affect. I’d been asleep no more than 20 mins when my husband woke me, to ask what I was going to cook for dinner!
    I absolutely hit the roof. If I’d been physically able I would have jumped off that settee and decked him. (I’m not a violent individual incidentally and have never hit my husband before, but fortunately for him, he was well out of range.)
    Earlier; before getting under the car, I had stupidly made the suggestion that we might cook together that evening, why could he not have seen that those plans had now changed, due to my injury?
    My husband has frequently come across as selfish and thoughtless and I’ve struggled over the years to help him understand how insensitive his comments can be and cold hearted he comes across. Trying to get compassion or understanding out of him, has been like trying to get blood out of a stone.
    As I lay and explained my predicament to him it was clear he just couldn’t grasp what was wrong. He’s more than capable of cooking, but all he kept saying is the kids want to know when dinner is and what we are cooking for them. I burst into tears and subsequently an overwhelming feeling of hopelessness descended over me.
    I’m exhausted mentally and physically, mainly because I do it all! No respite, little support. I’m the sole carer for them all and it falls at my feet to meet their needs 24/7.
    As I sat last Thursday with the care worker and explained my utter contempt and frustration over the situation that had occurred with my husband, she said, ‘You do know that people with Aspergers can’t read social situations or deal well with changes to plans, don’t you?’
    What an Idiot I felt!
    And frankly ashamed of myself!
    It’s been staring me in the face and I haven’t acknowledged it! Why have I been in such denial? After all, where did I think my children had inherited their condition from?
    The lack of compassion, understanding and selfish behaviour, the seemingly rude or inappropriate comments, the failure to be able to plan or organize himself or others, his inability to be able to budget or handle money, to manage time, the emotional and verbal abuse he vents toward me and others, the drifting off into his own world, the talking to himself, the emotional outbursts when he becomes overwhelmed, the inability to be able to communicate clearly or deal with change and his auditory processing problems. All characteristics my children display as part of their condition, so why didn’t I see it in him?
    I like to think of myself as a reasonably intelligent person, but I feel such a fool!
    For years I have lived in a bubble of just existing, but how could I have been so blind?
    I’m torn apart with emotions just now.
    On the one hand, I’m relieved that I understand that my husband’s behaviour toward me is not just born of some malicious hatred, but more likely because of a neurological deficit he has no control over.
    On the other hand, I feel a deep sense of guilt because it shouldn’t even have crossed my mind to consider hitting my husband. After all I don’t hit my children and they have the condition! Also if I’d allowed myself to see the situation, perhaps I could have got him some support in the same way I‘ve helped the children.
    Another part of me is deeply bereft. The clear realization that the love, support and affection I’ve held out hope for, is never likely to materialize, has left me completely devastated.
    The fact remains that I’ve felt isolated, alone and deeply unhappy for some time. I’m so starved of human interaction I feel I’m becoming a social leper myself and I’m clearly incapable of seeing what is staring me in the face! I just exist to my family. I’m just there. I just do.
    Just a Mum, Wife, Carer, Cleaner, Cook, Mechanic, PA.
    I hadn’t spoken to him about it for fear of an outburst from him, but over the weekend he came to me and said; out of the blue, “I think I may have Aspergers.” When I asked him how he’d come to that realization, he said, “I’ve been reading that book you bought to help with our son’s behaviour and I can see I have most of the traits.” This revelation rocked me somewhat and I remember thinking for a moment, ‘Is this a turning point for him, Is there hope?’
    I suggested he talk with his Councillor about it and the possibility of being assessed for the condition, which he did, but she suggested that it may cause him further mental anguish if he were to discover he had it. So he’s abandoned the idea.
    I’ve asked for help from the GP and the nurse practitioner in the past and explained that something was not right with my husband’s behaviour, but I’ve always been made to feel like I’m wasting their time. He was tested some years back for dementia because of his inappropriate and sometimes overtly sexual comments to people, but obviously that was eliminated as the cause. Embarrassed by the realization that this behaviour was not normal, he announced to the practitioner that he did it deliberately to shock people.
    His resistance to help or acceptance of his situation has compounds things over the years and ultimately this led to his nervous breakdown, however, I can only think that this ‘head in the sand’ method of dealing with his condition is making things worse for him and others.
    So where do I go from here? :roll:


    Posted by jaye2080 at Mon Jul 09, 2012 1:46 pm

    Hi coogybear,
    You've almost written my story there!
    I'd never heard of aspergers until I joined this site, but once I read up on it so much of my husbands behaviour made sense at last, where before i had thought him to be a rude, cruel boor, I now realise that it was just how he sees the world and couldn't see the harm in his own comments. Not that finding about aspergers will have any effect on us now as my husband is 70, but I sure wish i'd known about it years back. Like you, i've waited for the show of love and affection which I crave for but never comes, although i'm sure it's there somewhere.

    I'm not sure that finding out about aspergers has helped me in any way, I was starved of love and affection by my parents as a child, and now i know that my husband can never give it in the way I would want.

    Like you I don't know where to go to from here, maybe there is nowhere to go. Just got to keep plodding on i expect.



    Posted by swissmiss at Mon Jul 09, 2012 6:27 pm

    This is me too! The problem is though as I see it that there are only so many Aspie/Autie people you can build yourself around and support without it being too much for one person...and where do your needs fit in? Dont forget you need to be allowed to be the best person you can be in your own right.
    After my late darling husband took his own life finally the local vicar, who we had never met before, said to me, "You know you have been living your life this way for so long that you think its normal but it is anything but!" He wasnt diagnosed but was absolutely ASD including Semantic Pragmatic language Disorder and Passive Avoidance Syndrome. Now I loved him beyond reason as I do my boys and would sacrifice myself for their happiness. In the end though it wasnt enough to secure my husband's happiness because he knew the extreme burden [word i hate as he wasnt a burden but you know what I mean?] he was placing on me on top of caring for our lovely varying Autie sons. It helps to understand the reason for the behaviour but it shouldnt mean they dont need to be aware of themselves and learn how their non-neuro typical behaviour impacts on us and find ways of lessening the effect or indeed of getting more help for you?! Actually I think I am a bit Autie myself...dont understand people that well or social rules but there you go!
    The sexual inappropriate comments were the same as my husband too..I have wondered if it stemmed from some lack of impulse control? I dont want to alarm you but be careful how the realisation makes your husband feel about himself because low self esteem combined with growing awareness and perhaps feelings of guilt in relation to your sons might impact heavily on him. With my late husband I fear that the lack of impulse control might have been the reason he couldnt resist the impulse to take his own life?
    I am having counselling at the moment which involves CBT and person centred analysis...it helps me recognise my negative learned behaviour but also supports me with trying to recognise what is good about me. I think that is really important.
    Does your husband know you are talking about him to us in this way? It is necessary for you, I know, I needed it too... but he may feel over exposed and embarrassed?
    If you want to chat any time please PM me.
    Karen xx
    Karen x


    Posted by reinvented at Mon Jul 09, 2012 9:00 pm

    Yep Coogybear, I'm another

    Something very similar happened with my ex, when my son was a baby, long beofre my son's diagnosis. If I had known then what I know now - I would have handled things very differently and who knows, maybe we would still be married.

    The good news for you darling is that you are still married and you can have a lot of good together now. You'll be brilliant from now on. XX


    Posted by CrystalBlueWolf at Tue Jul 10, 2012 12:20 am

    My husband has Aspergus. I knew before i even met him that he had it though. It does make things difficult because he can get over loaded very easily and stressed quickly, which puts a lot of pressure on me. He's also awful with anything financial and doesn't see the problem i have with him spending money on stuff we just don't need. And he can also be very selfish at times, or make inappropriate comments. But i find that he is very, very loving and loyal. Neither of us are what you would call 'cuddly' we don't like cuddles or kissing all that much but we do, do it sometimes but i don't like PDA (Public Displays of Affection) and neither does he so it works. We do come to logger heads a lot over little things because he's stuck in his ways and was spoilt as a child, whereas i had a strict upbringing and wasn't spoilt. But we've never had a fight really, and if he says something inappropriate i tell him, or i tell him to shut up which ever works. He does get distressed when plans change suddenly, and he isn't hugely confident around strangers, but he's doing a lot better now as he was pretty much a hermit when i met him. Luckily he's a good cook and he cooks all our meals normally, and i do all the cleaning and laundry (that's the deal) or we will sometimes do it together depending on how we both feel.

    Try not to feel like a fool too much hun, some people really don't realise. Loads of people i work with have known my husband for years, and i'm STILL having to explain to them that hubby has Autism and i always get the same response 'Is he?? i never knew that!' so some people just don't see the signs. And unless its low functioning some people really can't tell, especially if they can pretty much function themselves.

    Or you get the other side where people think you have Autism and you don't. People have been telling me for a while that i have Aspergus because i have lot of the characteristics of it. After tests and test it turns out i have Borderline Personality Disorder instead. But everyone was adamant that i was autistic. So not everyone can tell.

    At least it might make things easier for you now that you know he's Aspergus. And it might help you cope with some of his behaviour *big hugs*


    Posted by swissmiss at Tue Jul 10, 2012 12:25 am

    What I meant was tread carefully because I realised that finding that my husband had a reason for his behaviour helped me to understand him but for him it brought fear. When our eldest son was made aware that he has Aspergers after his younger brother who is more severely affected was diagnosed he was frightened too. The more aware you are of the implications the more worrying it is. That is why I mentioned the counselling aspect. When our first son was diagnosed the psychologist helped us by stating the obvious that it didnt change who he was...the diagnosis. That is the important thing to remember. :)


    Posted by Coogybear at Wed Jul 11, 2012 3:19 pm

    Thank you for all your kind words and feedback. I know it must seem very personal for me to talk about such a revelation on a site such as this, but frankly I've never really been able to talk with anyone about my situation before. At least if I have done, I've not been heard. I live rurally and have few friends in the area and even fewer who are carers. My caring role has consumed my life and the older my family get, the harder I'm finding it.
    It's fair to say that since my husbands’ breakdown his behaviour has become much more pronounced. I'm sure over the years he has become adept at concealing some of the traits. I know he deflects comments about some of his behaviour and outbursts with some well-rehearsed phrases.
    My husband isn't aware I've spoken of him in this forum and any comments I've made are not intended to be derogatory or derisory in any way, but having spoken about them it has helped me appreciate that others too have had similar experiences and that despite my isolation and deep sense of loneliness, I'm not the only one. I do love him and care for him deeply.
    I think for me the number of my family that I have to support with the condition has had a profound impact. You begin to feel it’s just you. Perhaps it’s your inability to cope? It isn’t of course. It truly is too much for one person alone. No one is meant to endure such prolonged difficulties indefinitely, but with no choice you plod on. Finding this site has allowed me to express and release some of my frustration, whilst learning from the experiences of others in a similar predicament.
    Being a full-time Carer is such a roller coaster. I'm normally so careful and tactful around my husband and children. Always mindful of the impact things have on them. I've been silent for so long with only the walls to bounce my thoughts against. However, sometimes expression is the only way forward and as I throw my thoughts out into the ether, things come back with a sense of clarity and perspective I'd long forgotten. Sometimes all it takes is the timely words or measured response from a complete stranger; who understands, in order to make sense of something that’s been staring you in the face.
    It’s become apparent to me that I've neglected my own needs for some time and along the way I've allowed my identity and my sense of perspective to become lost.
    With each rebuff to my requests for help, I've had to become more independent and resourceful and in itself this has been detrimental, because people perceive you as being able to cope. I'm not coping too well of course and I believe it's time for me to be more assertive in my requests for assistance and perhaps along the way I might regain some of my self-confidence.
    My hope is that by talking about it I can rediscover myself, improve the situation and perhaps even be a comfort to others, if that's possible. Thank you all for being the voice in the dark that understands.


    Posted by jaye2080 at Wed Jul 11, 2012 4:01 pm

    oh coogybear, how well i understand what you are going through.
    I also live rurally so for most of the time i only ever see my husband, and it's his needs that have been put first, for more years than i care to admit to, i have always put him first, perhaps because i don't want to have to deal with the outbursts when his careful planning doesn't go according to plan.
    It is only now that i have reached state retirement age that i am seeing the full extent of how much of my life has been given over to the needs of others, i am feeling now that i have never had a life of my own.

    My husband developed epilepsy about 10 years ago and as a direct result of that he became psychotic.
    If he had not become ill i was in the process of leaving him as i really couldn't cope with his behaviour. Of course when he did become ill i decided to stay around until he was well, but i now know that he will never be well again.
    I wish i had known about aspergers many years ago, life could have been so much different, but then hindsight is a wonderful thing!

    I get to talk to the walls too :)


    Posted by john101 at Fri Aug 03, 2012 1:54 pm

    Hi guys not been logging on for a while, but felt I had to reply to the posts here.

    My god!!! does nothing ever change in our lives as carers, we all go through the same emotions and feelings in our day to day struggles with life, and it is a huge struggle, I wish i could take all of your pains away and tell you that everything is going to be all right but unfortunately I cant, nor can i say tomorrow will be a better day because we all know it wont be, it will be exactly the same as today maybe even a bit worse.

    That is the reality of the whole thing it will never get any easier our lives will always be determined by the people that we care for and our own lives takes a back seat. I think we all have to come to terms with the fact that this is how it's going to be (doesn't nake it any easier) the not enough hours in the day, the selfishness of the caree,the lack of help from anywhere,the constant struggle with money, the list is endless. I'm sorry if i sound like an old grump but after 10+yrs of it I am a bit cynical. What I would say to you all is "GOD BLESS YOU ALL FOR WHO YOU ARE AND WHAT YOU DO" IN my books you all deserve an olympic gold.

    Take care of YOURSELVES too

    JOHN ;)
Post new topic Reply to topic
Jump to