1. Struggling alone for too long.

    Posted by Coogybear at Mon Jun 18, 2012 10:11 pm

    I’ve always considered myself to be a reasonably intelligent person, but after years of struggling on my own with little or no support I feel like a complete idiot. I’m a 47 year old carer of a husband and four children who all have Specific and Co-occurring Learning Difficulties, namely Dyslexia and Aspergers Syndrome. My husband is also ‘recovering’ from a nervous breakdown exacerbated by his inability to cope with life and doesn’t like to be left alone.
    I knew nothing about the condition at first and perhaps; in the beginning, I was in denial that my children had Special Needs. I convinced myself that their early years were relatively normal, but once they reached school age however, their condition was so apparent it hit me like a brick. Having finally accepted they needed support, I set about trying to have them assessed, a simple process you would think. The School, although accepting of ‘A Problem,’ were reluctant to do anything specific about it without a statement and the LEA characteristically used delay tactics to avoid any assessment of their needs. This unfortunately deprived them of some essential early intervention that could have had a real impact. Eventually, it was left to me to have them independently assessed and go to Tribunal. Not only was this expensive, but also considerably stressful and time consuming. The evidence of course was overwhelming and we won, but that was just the beginning. On one level all the boys are quite high-functioning , however on the practicalities of everyday living and making decisions they find it hard to get by without constant reminders, support and direction. Living in a household full of Autistics has taken its toll. As they’ve grown older and the demands of Life have increased for them, it’s become quite a struggle for both them and me. Frequently I’ve been told that we are not entitled to certain help or have been fobbed off with indifference. Information and support has always seemed limited, so like most in my position I just got on with the job of caring for them as best as I could and didn’t make a fuss. Over time I became isolated and felt alone.
    In 2008 my husband suffered a nervous breakdown and since then I’ve done almost everything alone. Caring for the children and their needs , as well as my husband’s mental health problems. The huge drop in our income coupled with misinformation from the DWP has meant we have been living well below the poverty line for years. I trusted the information given to me by the DWP was correct. Reliance on the limited benefit I was told we were entitled to and my inability to stretch it out far enough compounded my feelings in inadequacy but also meant that I had to do all the household repairs myself or do without. From decorating and roof repairs to mending the car and washing machine, it all fell at my feet. Adding that to the general workload of being a Carer, managing a household, budget and trying to start a business in order to change our poverty crisis, meant it all became too much for me. Nine months ago I cracked. Having to take myself miles away to a hotel for the first and only respite I’ve had in 18 years. How I didn’t crumble before then is nothing short of a miracle! I slept for days. The irony is that my business, as a holiday let, was set up to give people just like me, a break. Carers in need of respite, the peace, quiet and space they needed to heal. Stupidly, I ignored the break my mind and body so desperately craved and just struggled on. I felt guilty at the thought of having respite. I told myself I could not justify the cost when money was so tight, did not need a break because I lived in such a beautiful place or could not trust others with caring for the children and could not leave my husband alone. What a fool i was! The decision to just up and leave was more as a result of desperation than anything else. It not only saved my life, but gave myself and my family access to outside support, which was never offered to us before. Sad indeed, that it takes such prolonged hardship and someone to reach such a critical state before help is proffered. Reading this discussion board I’ve realised my experiences are all too common. It took me to get to desperation point before I got any break or support. If I can offer any advice to others in a similar cycle, it would be to always double check the information you are given by the DWP or people in authority (In my experience they have been frequently incorrect.) and to be more challenging when they try and fob you off. Carers matter just as much as those who need care.

  2. Re: Struggling alone for too long.

    Posted by swissmiss at Mon Jun 18, 2012 11:51 pm

    Well said. I can empathise with everything except that I only have two boys who are ASD...the eldest high functioning and the youngest very challenging...they are 20 and 24 now and we ended up after years of frustration and fighting with LEAs home educating them both. My husband had undiagnosed ASD which had led to us having to run our own businesses together as he found employment difficult..the upshot was that 80% of that relied on me as he couldnt deal with modest amounts of stress. Then when our sons came along and especially the youngest we had to sell up as I simply couldnt cope. My husband reached breakdown point in 2006 and despite yet another assessment from SS we still didnt get any respite or support for our boys and in 2007 he disappeared in the night and jumped from a bridge...surviving but as a Paraplegic. Then 3 years later almost to the day he took his own life in bed while I slept next to him.
    Perhaps I coped on my own for too long but I did fight endless battles to try and get help and SS just gave us the endless runaround and when we complained they simply got aggressive and withdrew. Since losing him it has been a nightmare trying to cope with the grief which is compounded by the circumstances of how he died and my youngest who has been hitting himself in the face and not sleeping. I have only had 3 emergency short breaks of 3 or 4nights when like you I have cracked, despite having a package in place for the last 3 months. I no longer want to struggle alone but neither would I place him in a home which was anything less than lovely. The place he went to last week seemed nice but once we walked away they didnt wash him properly or shave him and set him out to his day club with no belt or shirt under his jumper. By thursday he looked seriously deprived.
    I do hope you are getting adequate help now as I know how hard it can be and look what happened to my late darling husband.
    You take care

  3. Re: Struggling alone for too long.

    Posted by CrystalBlueWolf at Tue Jun 19, 2012 12:04 pm

    Sending you lots of hugs. I very rarely have respite, as i often don't feel i need it. But i got to my breaking point a few months back and had to go away for a week or risk losing it completely. Hope things get better for you bab xx
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