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Carers UK Forum • Please pleas help, I am at the end of my tether.
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Please pleas help, I am at the end of my tether.

Posted: Tue Aug 14, 2007 12:30 pm
by Jane
Hi.

I don't know what I want to say or how I want to say it, or why, or if it will help - just talking about it. I just know I can't cope anymore. This will not be a cheerful post, and it will be a long post, I sincerely apologise for this, there's enough sorrow in the world without me adding to it.

The scenario - a man and a woman get married. The man is totally blind, with artificial eyes, and profoundly deaf. The woman has some kind of disorder like aspergers, or some sort of mania, emotional difficulties, social disability - I don't know what. But bear in mind this woman is a social worker with a psychology degree and extremely intelligent in an academic sort of way. Both are now in their early 70s.

In 1971, they had a little girl: me. They fed me till I was obese and I was bullied badly at school. I became a cutter and ended up in care with foster parents who physically and sexually abused me. Somehow, I fell in love when I was 17, and I am now 35 and we are still happily married. I know I'm lucky. Enough about me.

During my childhood, mum would make graphic suicide threats, sending me to school saying she would drive the car into a wall and there would be blood pouring all down the street. In the evenings, she would routinely hold her knitting needles, or cutlery to her throat and say I was "killing her".

One time, I hid all the scissors and sharp things under the bed, I was so afraid my mother would kill herself. My dad hit me for this, as he had no idea about my mother's behaviour - remember he is deaflbind, and mum is very artful about who gets to "see" her behaviour. She was a successful social worker, and when she retired she retrained as a home chiropodist. She's retired from that now too.

Indeed, the only person who sees the FULL extent of her behaviour is, and always has been, me. Occasionally my husband gets to see a little bit when they visit.

My mother has an extremely loud voice. When we are out she shouts loudly across the supermarket. We were looking at neighbour's baby in a pram the other day, and she waited till we'd gone down the street before starting to shout to that neighbour "KEEP THAT BABY OUT OF THE SUN IT'S DANGEROUS" - as always, I played my 'part' in the pantomine scenario set up by mum - "Please mum, please, they know that, it's ok". Mum insisted they wouldn't know. (These people aren't kids, they're in their 40s and not stupid, of course they'd know). I managed to bundle mum into the car before anyone heard her shouting.

When we are out, mum laughs and takes the mickey out of people whom she considers not as intelligent as her. She talks in riddles to the poor checkout girl, then if it's her mistake she'll apologise IN LATIN "oh mea culpa, mea culpa" - and then asks if anyone understands what she means. She involves bystanders. Then if they don't she'll say that school education isn't what it used to be.

She reads and reads and reads. If she is reading, she will ENTIRELY ignore any visual or audio stimulus. You have to literally shout, then she will crunch herself down in the chair "please don't be angry please don't be angry". All it was, was mum do you want a cup of tea. She COMPLETELY AND UTTERLY blanks out other people's needs and any social thing that is going on.

She has tantrums where she screams and cries - even in public - but please understand me - the trigger for these outbursts might be something as trivial as you asked her some little question that you asked a while ago, but never received a response. I am accused of being wicked, unforgiving, mean, cold, callous, cruel, hard... etc etc. I have been made all my life to feel responsible for everything.

I had almost no friends as a child, not just from being bullied and unpopular because I was so fat. On the occasion that I had a friend back to the house, mum would invariably begin screaming and crying for no reason, threatening to stab herself in the heart, eventually sitting on the stairs and either banging her head on the wall, or taking her shoes off and beating the wall with a shoe in each hand. Every single time I had a friend at the house, this is what she would do. I used to have to phone the other kid's parents to come and collect their child. When they came, I would hide, so nobody would see me, and ask me what I had done to my poor mother.

Please please don't think I am bad. My husband always says it's not me. I'm really trying hard to believe that and get through the rest of my life, for I sometimes suffer from depression myself. I also have severe migraine and asthma.

The telephone - there is a battleground.

All my adult life my mother has been insisting on phoning me EVERY SINGLE EVENING, and keeping me on the phone between 20 and 40 minutes. I never get to eat a hot evening meal. Every night I tell her I want to go and eat dinner. She starts loudly "oh what are you having, oh I like that too, we had such and such for lunch...."

It's entirely deliberate, simply to keep me on the phone, to manipulate and control me. She can hear the frustration in my voice as I try to be kind and polite, as I say "ok mum I'm going now bye" many times before I almost have to put the phone down on her.

She has various rituals - mostly verbal. She always finishes a call in PRECISELY the same words and inflection.

She says the same things over and over and over again.

For example, every single time (and I mean every single time) I park my car, she says "always remember the same lock gets you out that got you in"... (lock means which way the wheels are pointing). I use this example, because it's a good case of mum's repetetive verbal rituals, and her inflexibility of thought - maybe other cars will be parked around us whilst we are gone. It is extremely difficult for mum to imagine changes of circumstances, and also illustrates that she doesn't consider other people's needs. You just can't park at a crazy angle it's selfish to other people!

The same as she will sit and read oblivious to everyone else - when you are in a rush to get her to an appointment.

And I should mention she has hyperlexia. She reads at an astonishing rate. She can tell you what page a word was on, but she can't feel what the story was about. She reads the same books again and again because she likes the grammar and spelling and they way they are written. She cares nothing about the story. I know this seems like some kind of autism - and I have wondered about that, the tantrums, the boxed in thinking, the outbursts when plans change... but then how would she be able to mimic to such a high level to be a successful social worker, and why is she only 'symptomatic' for me? That is not autism surely.

She is obsessed with grammar, spelling, and she understands everything literally. She does not understand conversations because she doesn't understand metaphor. She pronounces words literally how they are spelled. Coin becomes Co-in, for example, but there are many.

She cannot understand that other people have needs and preferences that differ to her own. If you choose something different to eat in a cafe, she finds this difficult. If you say No, you'd rather not something, she demands - LOUDLY - to know why and if you have no particular reason - as ordinary people sometimes do, she will DEMAND AND DEMAND AND DEMAND that you have or do what she wants you to have or do. The control she exerts is immense.

She hoards - a house full of books, and in fact everything she's ever had in her life, is in that house. She doesn't clean. Dad has to try and hoover on his hands and knees (he's totally blind remember) around the junk. And they have high decibel blazing rows about this. These were some of the arguments I had to mediate and referee for when I was just a little girl.

Mum lavishes affection on my husband. It's extremely embarrassing for him. And she asks me nasty questions in public like "Have I washed my face" or "Do you bite your toenails" - how can she say these things in public! It's terrible.

SHE DOES NOT UNDERSTAND RELATIONSHIPS, SOCIAL CUES, CULTURAL NORMS.

EG, she doesn't understand that a SIBLING relationship is different to a marital relationship - she believes she is making me jealous in a sibling rivalry sort of way, of my own husband! How ludicrous. He has asked her to stop, but she wont.

She ALWAYS corrects the verbal grammar of me, and also of complete strangers - often people serving in shops. She engages them in conversation when they are very busy, keeping many people behind her in the queue waiting, and when the server responds, she will correct their grammar. She corrects people's spelling too. She cannot resist it.

When I was at school, if I couldn't do my homework, or I didn't understand something I would come home and ask her to explain - this was often the trigger for a suicidal outburst. I'm serious, an 8 year old asking their mum for help with maths homework, and next thing mum is on the stairs holding a knife to her throat. When I got a good mark 70%, she'd say "well that's ONLY 7 out of 10. I stopped going to school when I was 13 I couldn't cope with the bullying in school, AND a suicidal, psychotic mother and an angry, angry dad.

Am I a "carer"? If not, then I don't belong here, but I need some sort of support from somewhere.

I could go on and on for hours. But I won't. I will just now relate the latest, agonising (for me) "incident" that took place last Saturday.

Mum and Dad were camping in Derbyshire. As usual she phoned me every night they were away, saying the same things over and over again. Accusing me of pretending to have asthma (which is moderately severe, painful, and I have only been diagnosed a few weeks ago. A nasty shock, and it hurts to be accused of pretending). Every night a phone call - that's not right for people on holiday is it? When you go on holiday, do you call your kids every night? Especially to ask the same rituali

Please understand me - I

Posted: Tue Aug 14, 2007 1:54 pm
by Jane
Please understand me - I am NOT looking for a diagnosis.

I am just someone who is at the end of what I can take.

Where do I go from here?

I really hope someone cares enough to reply.

Hi Jane, I am answering this

Posted: Tue Aug 14, 2007 2:41 pm
by rosemary
Hi Jane,

I am answering this now so you know that there is support out there but my head all over after reading your posting not knowing which is the best for you.

Even though you gave so much details its hard to get all the facts when just using typed words.
I would say you need talk face to face with someone but who should it be.Your GP,your mams GP,Social Services,Mental Health teams for an assessment,counsellors etc?

Others may disagree with me here but you have to try put yourself first.

I am putting several links for you to look over.

CarersLine 0808 808 7777
CarersLine is Carers UK's free advice line for carers. It is open on Wednesday and Thursday each week between 10am-12pm and 2pm-4pm. Telephone 0808 808 7777

http://www.carersuk.org/Information/Helpwithcaring

http://www.carersuk.org/Information/Findinghelp

http://www.carersuk.org/Information/Fin ... anisations

What part of the country are you from??

Hopefully others will have more suggestions.In meantime keep posting to get some support.

Rosemary

Thank you so , so

Posted: Tue Aug 14, 2007 2:43 pm
by Jane
Thank you so , so much for your reply.

It is all a jumble what I have typed, you're right - but that's how it all is in my head about it - a massive jumble of upset, worry and even a little anger too.

Am I a "carer" - does a parent with a mental illness count?

I'm in Tamworth.

The thing I need most is to talk and someone to tell me it's not my fault, and help me plan how to handle these outbursts, etc.

Hi Jane I'm so sorry for

Posted: Tue Aug 14, 2007 2:44 pm
by Christine Carers UK
Hi Jane

I'm so sorry for the delay in replying. I've read your whole post and am just amazed by how much you have to cope with. It is so difficult to know what to suggest but we've some great members on here who I know will welcome you and offer their support in due course - you've just picked a quiet day to join us and not many people around! Lots of members use the forum to just unload and chat to others in similar situations who understand what its really like to be a carer.

If you feel that you want to talk to someone on the phone you can always try Saneline. This is a helpline offering support to anyone affected by mental health problems. They are open every day from 1pm to 11pm. The number is 0845 767 8000.

We also have a helpline - CarersLine - open Weds & Thurs 10-12 and 2-4. The number is 0808 808 7777.

I do hope this helps. Keep posting and let us know how you are getting on.

Best wishes

Christine - Carers UK

Rosemary beat me to it!

Posted: Tue Aug 14, 2007 2:45 pm
by Christine Carers UK
Rosemary beat me to it! I'm glad you've found us, I'm sure between us we'll be able to point you in the right directtion.

Hello Jane Welcome to the forum! You

Posted: Tue Aug 14, 2007 2:59 pm
by Maryann
Hello Jane

Welcome to the forum!

You certainly have/had alot to contend with and its no wonder that your head is all mixed up. I read all of your post and it upsets me to think that you have been through so much, but you have a husband who loves you dearly and that says alot.

Sounds to me like your a Carer and yes a parent with mental illness does count. So please keep posting and use the helplines and links that Rosemary and Christine have given don't forget that we are here should you need advice/support.

Sorry that its quick only I've got to rush out the door like... 20mins ago!! Just wanted to reply to let you know that your not alone.

Take care
Maryann x

Thank you so , so

Posted: Tue Aug 14, 2007 3:02 pm
by rosemary
Thank you so , so much for your reply.

It is all a jumble what I have typed, you're right - but that's how it all is in my head about it - a massive jumble of upset, worry and even a little anger too.

Am I a "carer" - does a parent with a mental illness count?

I'm in Tamworth.

The thing I need most is to talk and someone to tell me it's not my fault, and help me plan how to handle these outbursts, etc.
Jane,I honestly hope I type this in a way that will come across right and not cause you any offence.It seems to be that you yourself need help and advice first.100 people could type the words here that you are not to blame,we can all listen and sympathise but to be honest its coming across more deep rooted than that.Face to face is far better.

Christine included the link for Saneline,please consider using it.
Also,think about contacting your GP,maybe you could get some counselling that will enable you to pour out all your fears and concerns.I know several members here have benefited in the past from counselling sessions.

I found this on CUK's information page....

Carers Association South Staffordshire (CASS)
The Carers Centre
Austin Friars
Stafford
Staffordshire
ST17 4AP

Tel: 01785 606675
Email:carers@gn.acp.org
Web:www.carersinformation.org.uk

If the above group is near you,give them a ring.

Like Maryann has said..members here will support you and in time some of them will share their own experiences but please,in the meantime,pick the phone home and start the ball rolling to get yourself some help closer to home.

Be strong Jane
Rosemary

Me again Jane, My posting previous

Posted: Tue Aug 14, 2007 3:15 pm
by rosemary
Me again Jane,

My posting previous to this one was to address just yourself.This one now about your mam and dad.

Do they have any outside support at all other than yourself?
Have you any contact with social services?
Have you ever had a carers assessment done?
Can an assessment by your mams GP be done?
With both their disabilities do they claim all their benefits?

The above is just a sample of questions you may be asked when you do make contact with someone for help.

There is help out there Jane for both yourself and your parents,we just need find out which will be the right one.Be warned though,its not an easy road to travel as many here will testify to.Services are being cut and council budgets slashed thats why you need help from some one local to your area who will be aware of all this.

Rosemary

They are quite socially isolated

Posted: Tue Aug 14, 2007 5:09 pm
by Jane
They are quite socially isolated really, mum always says she "can't make friends", although she does go to Church, as do I (different churches, we live in different towns).

They do get disability benefits for dad, but mum would never go to the doctor for herself. She doesn't like to be physically touched, and is terrified of examinations, therefore she stays away from doctors.

I don't think mum would ever admit there is anything wrong - she cannot see things from the outside, and she cannot 'observe' her own behaviour in the way that I can and other people seem to be able to do.

It's a sad tale I'm afraid. All I ever want to do is help them and love them, but the pressure is so very great sometimes. I am a strong person, and aside from a touch of depression sometimes, I do ok - despite my rough start. I'm a legal secretary. I'm all they've got - so I must be strong. I have to bear up.

I feel desperately guilty for posting any of this, or even coming to this site. Really ashamed that I did this.