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Happy carers week – thank you dad, carer to my mum despite years of schizophrenia

It’s Carer’s week this week! 18th to 24th June 2012 – Spare a thought for all those carers out there giving up their time to help those mentally or physically disabled – well done all of you, the world would not be the same without you!!! 🙂  http://carersweek.org  (opens in a new window) and it was Father’s day yesterday!  What can you do to raise awareness this week and give thanks to all the wonderful carers out there?  Have a think…

The story of my mum and dad…  and schizophrenia… (may cause triggering to some – please read with care)…  🙂

I grew up with my mum, dad and three older brothers in a 3 bed semi in normal suburbia. Mum had had catatonic schizophrenia since 2 weeks after marrying my dad. (late 1950’s) He had to section her many times and has dedicated his life to caring for her, despite her awful behaviour towards him at times.

Mum was in and out of hospital during a twenty plus year period, sometimes spending months at a time incarcerated.

In the early days, she didn’t know my dad at all, and he would visit the hospital nearly every day and write her letters every day to try to get her to remember who he was – her husband. When she came out after the longest stay – the first one which happened two weeks after their marriage – she was just like a child again, and my dad had to teach her the smallest of things, like how to pay for something with money. Imagine that? Maybe it is why she spent years wasting money, buying things every day and hoarding them in her bedroom – as a reaction to freedom or maybe just because that was the first thing she learnt to do when she came out.

I admire his patience and commitment to his marriage, and so do many others.

And there I was, a child growing up in all of that. I can see myself standing there looking at Dad, pleading with him: “Daddy, please get rid of Mummy. I don’t like her. I want her to leave the house. I don’t want her as my mummy anymore.” I’ve often wondered if that’s how someone will feel about me.

Of course my brothers saw so much more of her illness than I did, they remember those times. I was born after the worst of it. One time, when young, they all had to barricade my mum in and not let her out the door while dad waited for her to be sectioned. She didn’t want to go of course – who would?

Mum was out of hospital during the first few years of my life until I was six (late 70’s) and she had one of her ‘turns.’ I don’t suppose I really understood it then; that she was hearing voices, that she was catatonic. I might not have known the word but I see her there – motionless and emotionless, as if everything about her was blank…maybe her kind of lost meant she was unreachable.

In the end she was sectioned and taken into hospital again. I remember the visits but I only remember one journey – the journey home with Dad. Age six there I was huddled in the front seat of Dad’s car. I stared out the side window into the darkness, so that my face was out of view as I forced back tears. I wanted to break down, to bawl, to ask questions, but I couldn’t.

When would I see Mummy again? Why did she have to stay in that horrible grey hospital? Why couldn’t she come home with us?

Sometimes Mum was horrible (screaming, swearing, slamming doors) and sometimes loving and soft at home, but I didn’t want to leave her behind, and I sensed that she hated that place with all the old people sitting around on worn, dull settees, in a big, plain room, nothing cosy about it, more like a waiting area, with all the people waiting for visitors like me and Dad to come and cheer them up. There must have been about fifteen or so settees, scattered about and I sat on one of them with Mum and Dad and we talked, interrupted by people yelling or waving their arms around. I didn’t want to look.

Most people in that place looked old – and some looked dazed and lifeless. It didn’t scare me, I had Dad with me, and he would protect me. They weren’t trying to harm me, but Mum said a woman in a wheelchair wanted to hurt her. She said the woman chased her up the corridor, wheeling fast, in a kind of fury. She wanted to bash her against the wall. Mum wanted to come home with us but she wasn’t allowed. She didn’t want electroconvulsive treatments (ECT) and medications. That’s what she said.

I didn’t understand.

I guess that place is what fuelled my lifelong fear of hospitals and doctors and just about any situation where I might be trapped and controlled by others. It also taught me to hide my emotions and deal with them in my own way or ignore them. The stigma surrounding my mother and her illness, and hospitalisations in a well known mental asylum, as they called them then, is what set off my urge to beat the stigma surrounding mental health much later on. I never knew then that it would be me sitting at a psychiatrist’s office, a victim of the very same stigma years later – but that’s another story.

***

But growing up wasn’t all bad. Mum doted on me and would often take me to the parks for the swings and slides, the feeling of the air rushing against my skin. Mum laughing, maybe as if she too was the child. And I remember people asking if she was my grandma rather than Mum. I guess she did look older. But I didn’t want people to think that of her. She was my mum. My mum, no matter what people said or thought. And she did care for me – I knew that too. She was late thirties when she brought me into the world. She’d dreamt about having a girl. She was very maternal despite her inner demons. The doctors said it was good for her to have babies, something else for her to concentrate on.

From play time swings and the freedom of the park to other swings; darker swings; Mum’s mood swings…

It seemed as though Mum wanted to punish Dad and all of us, as if she detested anyone enjoying themselves. When I think about, and I mean really think about it, maybe I know why she was like this. It’s not hard to imagine how her life was ruined by illness and how Dad was the one who kept sending her to hospital – no wonder she resented him. Maybe she felt that he had ruined her life by sectioning her so she wanted to ruin things for him in return, payback. And then there were the doctors, imagine what they put her through: forced electroconvulsive treatments without her consent, medications that made her lose herself completely and ice cold baths, all of which were facilitated there. The thing is, with schizophrenia of any kind, psychosis and other mental illnesses, the person only knows what they really feel, see, hear, taste or smell or think. That is their reality. And the doctors and Dad tried to change that.

I cannot imagine how awful my mum’s life was – years of torment both from within herself in the voices and hallucinations telling her to kill herself and then on top of that to be sent to a prison like place and be tortured by all those processes, restrained against her will, despite her best efforts to avoid them. Awful beyond imagination. But, she had tried to commit suicide too many times, there wasn’t much choice than to keep her in hospital. She’d be found on the beach wading into the sea, or sleeping on benches. Police would be involved. Although her ever-changing moods weren’t anything to do with catatonia, they may have been to do with voices in her head, paranoia, who knows. I have never discussed her illness or moods with her. But what I do know is that I am not surprised she was the way she was, the mood swings. Was she just supposed to come out of hospital after years, months or weeks of incarceration, and be fine and dandy about it, happy with her life? Her life was awful at times, and I don’t know who to thank for her still being alive and me being able to have a good relationship with her. I feel blessed by that, because in those days as a child, I could only see what was there, without understanding. It’s only now I realise what a victim she was; so much more than me. And knowing how much I have wanted to die at times because I couldn’t stand myself, I can only imagine how harrowing my mum’s life might have been, on and off.

At times she was hell bent on spoiling everything, and she was good at it too. She could create an all-enveloping darkness, like a cloud descending; anywhere or at any time she chose (although when I think of it now how much of it was really by choice?) Maybe she was jealous of how we all got on so well with Dad. Everyone had to be on someone’s side, and if she thought it was anyone’s side but hers, she couldn’t stand it. Other times it came from stress – perhaps a family get together. Dad saying she had to ‘behave.’ I guess none of us really knew what she might do, and many a time she would refuse to come to family events and get away with it – my eldest brother’s wedding, birthday celebrations, my dad’s work do’s, she just couldn’t handle them.

She would pick an argument, slamming doors as she fled and Dad or someone would have to placate her and coax her out of her room. These are not symptoms of catatonia or schizophrenia, but the product of confusion and resentment; of gruelling medications and physical treatments in the psychiatric hospital. It must have been hard for him. In fact, though I was far too young to know what was happening at the time, I can only imagine just how hard it was for him to see her catatonic, have her brought home after suicide attempts, section her and have her sent back. Sent back to the mental hospital; sent back to the place she hated so much.

But dad was going to be true to his marriage vows. Even though neither of them could ever talk about their emotions, and they still can’t.

I see something in me to – how their arguments and their fights, mainly my Mum’s part in them, somehow reflect in my behaviour as an adult.

***

I was bullied about mum at school when they realised that she had been in the mental ‘asylum’

It seemed that no-one in social services ever came to interview myself or my brothers or anyone to see if we were OK or whether we could cope.

Mum has never admitted to or discussed her mental illness with me, despite my telling her of my mental health issues. She was in denial for me too.

I had Adlerian therapy and forgave her just like that. And I am so glad I can have a good relationship with her now. I had trouble at times taking in how dad could let her have four children – what about us? Dad didn’t know better – he was told by certain doctors that having children would benefit Mum and her disease, without a thought for the children that would be born and discover the down sides of that decision and advice. I have thought about this many times in my life, and I do not blame him now (oh boy did I blame him in the past) for the decision to have four children given the confusion he must have been living in, and his dedication to wanting to give my mum some happiness. Over time I realise it’s not the right attitude to be negative (it only hurts the negative person), and I am so grateful to be alive and I wouldn’t change my family for the world – after all, my story would be quite a different one in other circumstances and I feel that maybe I am a better person for my own struggles with mental illness – more empathetic and understanding.

***

My mum goes out nearly every day, by herself, or with me or my brother or dad sometimes, she knows lots of people, is sociable and all because of my dad I reckon. Mum shows me off when we are out ‘this is my daughter’ and she loves it when people say that I look like her. She likes feeling younger than she is and hanging out with me, going in pubs, for walks, out shopping. Sometimes when she has a lie-in she says what a waste of time it was, wasting the day being asleep and other times she says that ‘oh at least it made the day go quicker. But she doesn’t know how to pay a bill or take responsibility and she hasn’t cooked for years. We also walk on eggshells to placate her moods if they come.

When dad got ill on his return from a skiing trip, I realised he needed to go to hospital. My mum was there in the house but she was clueless as to what to do and thanked me for sorting it out.

Mum rings me when she cannot get hold of dad and starts panicking that he’s ill or had an accident at work (yes at work he is at 80 yrs of age-my mum is 77 now).

Caring for her, if something happens to my dad, scares the life out of me. I have only just got myself better, but I know it is something that may be inevitable.

But for now, my mum has a life worth living, and that is just great!

Happy Carers Week! And thank you dad – I appreciate you even if mum cannot 🙂

PS If you liked this article/samples of my memoir, why not buy my book from Amazon – Don’t worry it’s not a miserable read, it’s about life, growing up, adventures, mental health and fun too! – get it here: My Alien Self: My Journey Back to Me on Amazon (opens in a new window)

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3 comments to Happy carers week – thank you dad, carer to my mum despite years of schizophrenia

  • Robin

    Hi Amanda

    Wow. I only came across your blog yesterday and I can’t stop reading it. I’ve often thought about putting my own story out there as I don’t think there’s enough material on what it’s like for children of parents who are mentally ill. I had the intention of becoming a counsellor at one stage but I realised it was too triggering for me. I applaud you for all of the work you have done on yourself and your determination to help raise awareness about mental health.

    My mother has what we suspect is paranoid schizophrenia and as she clearly suffers from anosognosia, it’s proving to be extremely difficult to help her and to get any help for her. She believes literally everyone (including me and the doctors) are involved in a global plot against her and my sister (who she cares for full time). My father lives in the same house and she constantly accuses him of all kinds of things from keeping her prisoner to placing dead flies in her bedroom. It’s heart wrenching.

    As far as I know, she was diagnosed with major depression when I was a young child and took herself off meds when I was 14yrs old. She’s always heard voices and had hallucinations and I remember her telling me when I was very young that she didn’t have manic depression (now known as bipolar) or schizophrenia. My sisters and I were raised believing she was ‘spiritual’ as the voices were not a symptom of being mentally ill, according to her. We were brainwashed for many years and it’s only in the last three years that I’ve woken up to the fact that she is severely mentally ill and always has been. My reality has been so warped. I’ve got a great therapist who is helping me to see the dysfunction for what it was / is as I thought it was normal.

    This really struck a chord, “It seemed that no-one in social services ever came to interview myself or my brothers or anyone to see if we were OK or whether we could cope.” Despite my own mother being heavily medicated and witnessing her being taken away in an ambulance after she nearly died when I was 11, and despite her being under a string of psychiatrists til I was 14, nobody ever asked us (the children) if we were coping.

    One time, a psychiatrist wanted her sectioned, but her GP fought it apparently. I think my mother was paranoid about having us taken away by social services. I know she kept aspects of her mental health quiet. On occasions I’d ask her, “What about me?” and to be honest I was envious that she was getting psychiatric help and we weren’t getting ANY help. She’d respond very angrily with, “What about MEEE?!!” (as in herself). She had been told by doctors that as we weren’t showing (according to her) any outward signs of being distressed, we were coping just mighty fine. I realise now that my sisters and I developed many a coping strategy to deal with the craziness. Dad was emotionally abusive on top of everything and had a heavy hand when it came to disciplining us. We had it lucky apparently as they had had shoes and leather belts. We grew up thinking nobody really cared as Dad was of no emotional support and Mum had practically driven family away with her constant negative self talk which would sadly drain the soul of anyone who would engage in a conversation with her. She was and still is a vampire!

    I was sent to the school counsellor when I was a teen as I was horrendously bullied. I’d talk about killing myself. There was nowhere for me to escape. Homelife was hell and so was school. I hid my self harming and I didn’t realise it was a sign of suffering til I was in my late twenties. I thought I was the only one doing it. After two or three sessions, the school counsellor called my mother to say that she suspected I had clinical depression and advised her to take me to the GP. My mother came with me and as I thought I knew everything there was to know for my young age about mental health, I lied to the GP because I didn’t want to burden my mother with a clinically depressed daughter. I also didn’t want any bullies finding out that I was clinically depressed as the teachers would have had to complete an assessment of me after every class. I didn’t like the doctor and perhaps if she was more engaging and had some warmth about her, I might’ve opened up. I didn’t get any further help from the school counsellor as I was deemed OK!

    A year later I was acting very strange (paranoia) and cutting chunks of hair out of my head. Then I did a Britney Spears and shaved all my hair off! I was in my first year of sixth form and I didn’t want to be associated with the girls that were bullying me so this was my way of disassociating from them. I have nightmares to this day about losing my hair! I just thought, why am I sharing all this and it’s because the comment you made that I mention above triggered these memories. I feel for all the young people who are suffering in silence. Maybe there should be more awareness in schools about mental health.

    Anyway, I’d best stop there otherwise I’ll keep going, lol. Thank you for sharing your story. I wish you all the best on your journey. You are very inspiring 🙂

    • amandagreenauthor

      Hi Robin, thank you for reading my blog – I am glad to hear it’s helpful to you, but sorry it was also triggering. It sounds like you have had a hard time – I hope you are getting help and support now. Writing is such a tonic and I expect you felt a little better having written this comment on my blog. Sharing is good. I also feel there should be more mental health awareness in school as it’s so taboo and seen as a weakness to pick on for youngsters. I was picked on as a young child because of my mums hospitalisations. Horrible. All the best, Amanda 🙂

    • amandagreenauthor

      I wonder if you might find my memoirs helpful 🙂

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