Real Stories
Crumbs.
In the past I have been through a lot of trauma, however, the beginnings of which did not really start until I was eleven and the emotional/psychological subsequent onset did not begin to kick in until I was in my mid to late teens.
Something I was very much unaware of was how profound and relevant the issue of mental health was/ is and has been throughout my journey.
Prior to the massacre of events that shadowed my adolescence, it was only a consequence of my biological mother experiencing a nervous breakdown induced by post natal depression that resulted in my being brought up by my grand parents. For me, an experience I now regard as a privilege.
You have got to mean the word love and when I speak of my mam and dad I refer to my grandparents and I love them and I mean it.
Nevertheless, the “what if’s?” did echo in my mind for many years.
I could feel that there was some type of taboo surrounding my mother but no one ever tried to explain what it was. All my dad (grand dad) would ever say is your mother’s badly she’s not well, but no one would ever try and explain!
One minute I would be told this woman is your mother and yet it was a separate woman to the one I knew as mam.
It was very confusing, and I was just left to my own devices to figure out who was who.
Even now as a young adult, there is still a thick smoke screen surrounding what exactly was my mothers diagnosis. She, herself is very obstinate and very cagey by what she does say when whoever is brave enough to raise the issue!
Let it be said that love was never something I was short of, in fact it would be fair to say that I was marinaded in it.
Yet evil does come in many guises and in my experience that mask worn was that of my cousin (technically second cousin).
The abuse I endured, via a relative, began at the ripe ol’ age of eleven and went on until I was sixteen. It is only with hindsight that I may now see the correlation between where my abuse began and my threshold into the world of paranoia substance misuse may be linked.
As my feelings and emotions began to become more coherent, only to me of course, did I arrive at the decision to break the silence and out the person who had been crucifying me with what I eventually realised was their own guilty sickness, that went on for many years.
Subsequently I went through all that is part and parcel of the build up to a crown court trial. The eventuality being that I was cross examined in total for eight and a half hours, also including a couple of mistrials due to technicalities, which only embellished my neglect toward myself.
For me now, these happenings were all about eight year ago and yes I did win and my prize was the defendant being served to a custodial of three and a half years.
Always, always eager to please and yet absolutely terrified to feel at ease with myself. Constantly searching for a reason to feel bad or blame myself for something.
Feeling wretched and contaminated in your own skin, when being who you are is actually taking you to the brink!
Everyone telling you you’re doing well and that you are ok! And all you want is the comfort of nothingness.
At times the pent up emotion was like a volcano ready to erupt and at other times so elusive and intangible you are not really there.
How do you describe what you go through in the middle, in the hollow of your being, apart from thinking that you are going out of your mind, but in other words you know that you’re not cos you have recognised that you are thinking about it?
Such inner conflict does not take away the lucidness of detachment nor the effort it takes to bring yourself back.
Intense paranoia and lack of self worth, with a bare recognition of any self!
The more I begin to recognise some of the transitions in the ways I deal with myself, the stronger I feel that I am re establishing a sense of normality which really is pre- ordained for all of us, but when you are muddling through a personality with uncomfortable traits that you really don’t feel belong to you, it is only then are you able to observe from the outside, break off a crumb of contentment and be happy you’ve survived.
I have been troubled with paranoia for many years and even though it may sound like a joke, there is no bigger a bitch than arguing with yourself, cos hey your never gonna win!
I was then diagnosed with having PTSD (post traumatic stress disorder) a condition which was described as been expected to last for five years plus, but not forever.
For me, at that time, this definition of my state of being was difficult to decipher yet I had no alternative but to accept it due to the pending legal proceedings.
It is only through hindsight that I can see when I felt out of control and in hyper states of panic and at other times deep phases of self loathing in situations that really did not command reactions displayed by my own nature. I can see now that over the years the lucid emotional roller coaster I have found myself on has gradually lessened.
Nevertheless, only now and in recent years have I been able to begin to get my head around the diagnosis and definition given by the psychiatrist.
I still got through secondary school by the skin of my teeth, even though there were any number of attempted suicides through those formative years, I even qualified for sixth form.
Emotionally though I was so torn and fragmented I didn’t really know who I was nor why I was so compelled to use drugs. The relentless inner turmoil and sadness and rage I could feel brewing and just threatening to unleash its self was like being a split personality and any moments of calm that I was lucky enough to grasp just reduced me to tears or an otherwise mess!
I began to question some of the things that had happened to me and gradually that turned into the snowball affect.
During these times I also began writing, but, at the time I didn’t realise I was in fact being my own counsellor.
Its only now that I can recall being in a work environment and feeling so much the out cast and as though people were only humouring cos they had to, be they work colleagues or whoever they were.
I always had an impending fear/dread of authority, however transparent the job title I adorned or even just been spoken to by a bouncer at a night club or a cashier I always felt less than?
I have had counselling for years off and on and for a long time I was embarrassed about it. I have really had to work hard to convince myself that there is no shame in doing something that will make you feel better, even though that is some what a very simplified view of counselling.
I used to always blame other people for being a bully. Even when everything is going ok however temporary, I am like a divining stick to find a flaw and you will have to do better than any metal detector to find a silver lining in any yarn that my sob story, self loathing conscience spins.
Once legal proceedings were initiated, I was being taunted in my own home town by members of my own family, where my only crime was to try and save myself by standing by the truth and of course to protect the other young children in the immediate family from this animal putting any of his sick designs onto them.
Once the trial dates were in the pipeline, it was then requested of me to have a psychiatric evaluation of my mental state. Hence forth, I followed suit as I had nothing to hide. However, under no circumstances was I prepared to relinquish my chance of having a successful prosecution and seeing that justice was done.
With regards to relationships and intimacy, I have noticed and only with the gift of hindsight that there has been a pattern with my past relationships and I have came to the conclusion, through much deliberation and an acknowledgement somewhat ridden with resentment, that I am in affect still harbouring painful, emotional barbs what are keeping me connected to my cousin, albeit psychologically and emotionally this attachment in a way is keeping the pain alive.
Thus, as a consequence, perpetuating the convoy of abusive men and partners that pass through my life. Primarily it has became visible to me, just where in my past the ‘seat’ of this deep rooted distrust and longstanding lack of self worth may stem from.
Not-surprisingly, as a small child, i.e. under the age of eleven, I was full of zest and the child like intrigue we are all supposed to have at that age. However, I did not know that just around the corner, my illuminated empire of fantasy and freedom was about to become tainted.
Through much therapy, as well as dragging myself through numerous addictions and not without having a few go’s at some spiritual excavation, I have began to wonder what might it be that is preventing me from severing the emotional umbilical cord between me and the man that abused me, what spell is it that is disallowing me from bringing an end to all the self ridicule and self sabotage, the paranoia, the anxiety, the re-occurring depression what is mainly caused by my affairs with addiction.
Again, I am becoming my own example of the ongoing instability I have with my own thoughts.
Something which did cross my mind, something I had not considered before, either that or I’d hidden it so well that even my own psyche, up until now had failed to find it, was the almost unbearable thought that at one point I did actually love him. I loved him like any child would, with my then limited knowledge of the world and without access to any comparison, I loved as any child would love a friendly relative, and then he turned.
He turned and became a type of secret Jekyll and hyde, which for me was very, very confusing. I could not and did not have the capacity to process why this switch in personalities happened and continued to happen time and again, nor could I figure out why I felt as if I were to blame and as if I was the bad and shameful one.
Looking at things in this way, is a very recent development for me and has evoked a certain level of unrest and yet to a degree, a sense of clarity. Might it be that due to my inability to process a lot of the confusion and pain I was going through, that my behaviour and my distaste for my own self, was only me acting out the shame and even further confusion of my young adult self trying to rationalise, subconsciously or not, that at one time I actually loved the person who abused me. Again, this re-creates a relentless inner turmoil and guilt and even further self ridicule (stigma), anxiety and paranoia.
However, many a moon has waxed and waned since those heartfelt good ol’ painful days. Even though things still get tough for me on a daily basis, one of the tricks what I use to get re-motivated, is to remember that whatever may be bothering me at any given time nothing will ever take me back there. Nor will any other sense of dread come close in comparison to where in once have been.
I am living in Cambridge now and back at University, working towards a degree in Film and Media.
I have my own flat now, a good bunch of friends and a wealth of experience from the tales if terror that once upon a time I had to go to sleep to get away from because they were actually my reality.
To anyone reading this, if you feel you can connect or as though you can relate but are struggling to muddle through what being a survivor leaves you to with, my advice is this…
“During, one of my many attempts to stop smoking cigarettes I bought myself a little card as a treat and a bit of encouragement and on that card it read ‘if you’re going through hell… Keep going!’
It meant a lot to me and I hope you may be able to derive something from it too.
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Eating Disorders
Since I was 13 I have had Anorexia, and I still have tendencies even now. I started off thinking I was ugly and since I couldn’t change my face, I would make my body more attractive.
Being 13 (and having no interest in maths), calories weren’t a concept I could easily grasp, so restricting was difficult. I used to reason that if it was dry, it couldn’t contain much fat, and fat had to be worse than calories. Of course I was wrong on both accounts, and the weight didn’t exactly fall off. Instead of eating different things, I ate less of the things I was already eating, restricting myself, in the end, to the equivalent of half a packet of super noodles a day.
By the time I was 15 I was 5st 5lb. I was always tired and irritable, but the massive sense of achievement I felt whenever I went a day completely without food, or when I looked in the mirror and could see most of my skeleton, was too good to want to stop. My weight seemed like the only thing I could control in my life, like the only thing keeping me attached to the world, when actually it was one of the biggest things stopping me from participating in everyday life.
I started to go for therapy when I was 16, and begrudgingly put on weight. I was terrified I’d lose control and not be able to stop eating. It worked for a while though, and throughout my 16th year I was around 7st.
I now feel more in control of my life and although I restrict my size I am in a much healthier position than I was.
By Tash, member of Making Mental Notes
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Here is my fourth blog entry all about living with and caring for my mother who has dementia
23.07.2010 – What’s On the Agenda (Part Two)
Just as dementia has affected my mother’s ability to participate in her usual activities outside the home, so it has affected her abilities to do many of the things she enjoyed doing at home.
Her greatest love has always been reading, and one of the goals she achieved later in her life was to have a room entirely devoted to her books. It wasn’t quite grand enough to be called a library, but “Mum’s Book Room” it certainly was. However, I noticed that as dementia took hold she was reading less and less and she is now not even reading short magazine articles. Realising she had not been to the optician for several years, that was one of the first things I arranged when she came to live with us. Her new prescription glasses did wonders for her vision, and she was certainly then physically able to read, but she still did not read anything even though I had books and magazines all over the house for her. Finally, I realised the problem. Reading requires a healthy short-term memory. My mother can read, and has read sentences aloud to me quite fluently, but she cannot remember anything for long enough to be able to understand what she is reading. By the time she finishes a page she no longer remembers what she read at the start of the page, so reading has become a source of frustration and confusion for her, instead f the wonderful, rich gateway to the world and imagination that it once was. Of all the effects of dementia, I think that for her this has been the most cruel.
Doing jigsaws was another indoor activity that my mother enjoyed in her later years, and in fact she started something of a jigsaw “craze” in the retirement flats where she lived. We would regularly give her a new puzzle each Christmas and would enjoy hearing of her progress with it over the next few weeks. Then one year the 1000-piece puzzle never did seem to get finished, so for Mother’s Day we gave her a 500-piece puzzle, which she started, but again we didn’t hear of her finishing it. Once she came to live with us we tried doing jigsaw puzzles with her. She would sit at the table and sort pieces into some kind of order but seemed unable to match any or to concentrate for any length of time on what she was doing. I tried looking for puzzles with just 100 or even 50 larger pieces, but the only ones I could find were for children with pictures that my mother would find babyish, so I had one made up of a photograph I had taken of a local landmark. Sadly, this still didn’t work – my mother no longer seems able to concentrate long enough to enjoy jigsaws. The same goes for other kinds of puzzles and board games, all of which she once took pleasure in.
Sitting outside in our garden is something that my mother has always enjoyed and, I am thankful to say, still does. From early childhood when she would visit her grandparents on a farm, she has had a lively interest in nature, so she looks at and talks about the flowers, insects and birds with enthusiasm. However doing this is, of course, dependent on the weather, which, this being England, frequently doesn’t cooperate. She can still look out of the windows at the garden and the birds but this does not seem to hold her attention in the same way. More interesting to her is what goes on in the street at the front of our house and she will often report to me to about a person walking past or a car turning into our shared driveway. She often assumes these movements outside our home relate to her in some way, and I will expand on this in another posting.
Eventually, we wondered if my mother’s daily, repeated questions of “What should I be doing now?” and “What’s on my agenda?” could be answered by her, so we tried either asking her in return, “What would you like to do?” or saying “You can do whatever you want.” She has never been able to respond to that, except, on “good” days, with another question such as “Well, what am I supposed to be doing now?” or “Do I have any appointments?” She seems to live in a constant state of anxiety about not doing something she should be doing, and no amount of reassurance, help, or suggestions from us appears able to relieve that.
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This is the third entry in my blog about living with and caring for my mother who has dementia
25.06.2010 – What’s On the Agenda (Part One)
“What’s on the agenda for today?” “What should I be doing now?” “Is there something I have forgotten to do?” “Do I have any appointments?” My mother asks me these questions several times each day, and unfortunately almost always I can only answer “nothing” or “no”. There are only a certain number of times a person can go to the doctor or dentist, to the optician or chiropodist, or even to the hairdresser. Although I try to arrange such regular appointments to ensure they are not all happening on the same day or even in the same week, there are still weeks that go by with nothing scheduled for her. She finds this very difficult to handle, as she remembers herself as always having something to do or somewhere to go.
A highly intelligent woman who, given different opportunities in life, would have been happiest as an academic, my mother spent many of her retirement years attending courses. At one time she was going to two each week, plus frequent weekend residential courses, learning about anything from modern art to the history of bricks. However, as her dementia started to affect her abilities, she first dropped the residential courses, and then reduced her weekly courses to one and then none. It has now been several years since she attended a course, but she misses the sense of purpose that attending them gave her.
Going to concerts and the theatre also used to be regular outings for my mother, but since the progress of her dementia I have been reluctant to take her to public performances as at home she seems unable to repress her need to chat – no matter what else is happening. However I finally decided that a local concert by a military band would be a good trial run – she always liked that sort of music and the venue was one that would be easy to leave if her talking became annoying to other people. I also hoped that the style of music would be sufficiently loud that any comments she made might be drowned out! So off we went on the appointed evening, and my mother behaved impeccably throughout the first half of the performance. We exchanged whispered comments about the pieces being played, as people do, but apart from that she sat quietly enjoying the music. However, one hour seemed to be the extent of her ability to remain quiet, as, shortly after the start of the second half the title of a piece to be played reminded her of a family story, and she proceeded to tell me the story, complete with hand gestures, throughout that piece and the next two. I did everything I could (short of telling her loudly to shut up) to dissuade her from talking, but she no longer picks up on the cues of expression and body language that make it obvious the other person does not want to listen, and she talked right through my attempts to say “you can tell me that later” or “let’s listen to the music”. Fortunately no one around us seemed disturbed by her chatter and she was eventually distracted by a dramatic piece of music that managed to hold her attention. It seems that two hours is now too long for her to sit quietly, but I plan to try again with a shorter concert or possibly a one-act play.
My mother also travelled quite frequently until her dementia made that impossible. Initially her travelling consisted of visiting family members who lived abroad at least once each year, but eventually that changed to visiting family members in the UK several times a year, sometimes going on holiday with them. She also had a friend with whom she would go on coach trips around the country, and she enjoyed the travelling itself, by whatever means of transport, nearly as much as spending time at her destination. Now, however, she becomes restless after half an hour in the car and feels that an hour is a very long trip indeed.
Unlike the rest of our family, my mother has always hated shopping, so she immediately rejects any suggestion of a trip to the shops. This is probably just as well, as she is physically only able to walk very short distances and refuses any kind of assistance. She also becomes muddled over her cash when trying to pay for anything, and needs very careful supervision to ensure she is not short-changed. Other trips out, such as to one of our local cafes or teashops, are more successful, but again I have to choose one that has parking nearby so that she can walk from the car to the table.
Having short-term memory loss means that my mother does not remember herself as she now is. She believes she is still the active, able, independent woman of 20 years ago, and has commented to me on several occasions that perhaps she should get a job as she is sure she could get one easily. Seeing her reduced to an occasional trip out for afternoon tea, or a short drive into the country, is heartbreaking for me, and her effusive gratitude when we do such things almost makes it worse.
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This is the second entry in my blog about living with and caring for my mother who has dementia
12.06.2010 – Losing the Concept of Time
One of the effects that short-term memory loss seems to have had on my mother is that she is no longer able to keep track of time. She can still tell the time, and in fact looks frequently at clocks and her watch to see what the time is, but relating events to the time in which they occurred is no longer possible for her. The result is that she increasing believes everything she thinks of, or remembers, happened in the last day or two, or even earlier that day, and this unfortunately increases her confusion and consequent distress.
An example that has recently bothered her is the fact of my father’s death, which occurred in the 1990s. She led a busy and active life on her own for over a decade after his death, but all memory of that time has now vanished, and when she remembers that my father has died (which she often doesn’t – but more of that in another post) she thinks that it happened recently. Knowing that she is no longer able to handle the details of such an event, she then worries that she hasn’t notified his family and friends, the funeral wasn’t organised properly and to my father’s wishes, and that she has omitted to pay for the refreshments. She also states that no one ever gave her any paperwork in connection with his death, such as a death certificate, and worries that his pension is still being paid and she will have to pay it back. It doesn’t matter what I do to reassure her – I have tried sharing my memories of all that happened, showing her the actual documents, writing out a list of events for her to keep and to refer to, etc. – as within a few minutes of my efforts she has forgotten them entirely and is once again asking me if we have notified his family…
Occasionally my mother is able to create a new memory, usually of something unusual that occurs, but then she is unable to keep that memory in its proper time frame. A few weeks ago we went out for the afternoon to visit some of her old friends that she hadn’t seen for quite a few years. One of them kindly hosted afternoon tea for the gathering and it was a lovely, highly successful visit for all concerned. The next day, I was delighted to find that my mother remembered her outing, and the following day she still remembered parts of it, but was now saying that it had happened “yesterday”. Each day that passes she remembers fewer details of the afternoon, but still recalls she saw some of her friends, and each day thinks she saw them “yesterday”. On a few evenings she has thought that the trip was earlier the same day, but then evenings seem to be when she is particularly affected.
Throughout the time that my mother has been living with us the evenings have been the most stressful, as each night she either decides that it is time for her to “go home”, or, if she accepts that she is spending the night with us, worries that she hasn’t brought her suitcase, or hasn’t unpacked it, or has forgotten her toothbrush, or one of numerous other things. All this time she has had her own room with ensuite bathroom, complete with many of her own belongings and all of her clothes, but each evening she is unsure of which room she is staying in and asks for directions to it. It is clear from her statements that every evening she believes she has just arrived that day, and if she thinks she is staying, then it is only for a short visit. No amount of repetition over the now hundreds of days that she has been with us seems to have made the slightest impression on her – the inability to remember the events of the day means that she defaults to the assumption that her current circumstance is new and temporary.
Thinking deeply about the implications of the apparent connection between the concept of time and short-term memory could result in a long philosophical thesis, but from a practical point of view losing them both causes confusion and distress to the sufferer, and severely tries the patience of those who care for them.
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Marian Keyes is one of the most successful Irish novelists of all time.
She has been producing a newsletter talking about her experience of depression. To read her newsletter and keep updated please Click Here.
With thanks to Marion Keyes.
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This blog is about my life and thoughts as a carer for my mother who has dementia. She showed the first signs 3 years before we brought her to live at home with us.
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28.05.2010 – The Diagnosis Dilemma
When my mother first came to live with us we took her to our local GP for a general check-up and basically to get her onto his records. Her arranged the usual “MOT” style tests for her and mentioned that when she came back for the results he would also carry out some cognitive tests on her. “Great!” I thought, “then he will see how far gone she is.”
The day arrived, complete with its early morning double-length appointment, and the GP discussed the results of the other tests with us. He then seemed to think the appointment was over, so I reminded him about the cognitive tests. Somewhat reluctantly he printed out a few papers and asked my mother questions about the date, season, the town we were in, and to repeat a list of three items after him. She answered all the questions correctly, and the GP looked at me as if I was wasting his time. In fact, he had just wasted ours. I’d love to have had him ask her the same questions later on in the day, when she hadn’t just spent the past hour asking me over and over again what day it was, where she was, and what was happening.
My mother, like many older people, was diagnosed over a decade ago with high blood pressure, and so has seen a doctor regularly throughout that time to have this checked. Her increasing dementia over the past 4 years, so obvious to those of us who know her well and are with her for most of each day, has never been diagnosed, and in fact I have actually been sitting at one recent consultation with her when the doctor has commented on how bright she is. And she was – for him.
My mother’s sister is more confused than my mother, and owing to her declining physical health sees doctors far more frequently, yet according to my cousins their mother’s dementia has also never been diagnosed.
I can’t help wondering that if neither my mother nor her sister has been diagnosed with dementia, then how many other older people are similarly suffering from the illness and yet remain undiagnosed? How prevalent is this condition? Does anyone really know?
My suspicion is that this apparent under-diagnosis is because people of my mother’s generation have been used to dealing with authority all their lives. They grew up with it during and after the war and many worked in a type of authoritarian environment that we would not tolerate today. So they know how to “behave” when in the presence of an authority figure, and go into an automatic performance when confronted with a doctor. I have actually seen my mother turn this on as she goes into the surgery – she sits up straighter, makes sure she looks the doctor in the eye, smiles a lot, and insists that she is feeling well. It is amazing how much can be assumed from a nod and a smile. Even though I know my mother has no idea what she is nodding or smiling about, the doctor takes it as a sign of cognition and a positive answer. It is actually neither – it is her very effective coping mechanism when she is hiding her confusion.
So why have I done nothing about this? Because I have no right to. I do not have power of attorney over my mother’s health and welfare, and each time I have asked my mother if she would like to discuss her confusion and lack of short-term memory with a doctor she has refused to do so. And would it really help her anyway if her dementia were diagnosed? I suspect that nothing much would change for her, except possibly some pressure form the doctor for her to take more pills to treat the symptoms, which she would not want to do and which might have unwanted side-effects. For now, I’d rather just take it as it comes, day by day.
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