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Carers Experiences
NEW Carers Expert- By Experience sister site This site will be where you will find carers stories. It is new at the moment and will be added to shortly
Link to other carers Stories http://www.freewebs.com/pamshouse/
I would like to apologise to those carers whose stories and experiences were on my original site. If you would like to contact me again I would be more than happy to add your stories, along with new carers visiting this site. All names will be changed to hide identity of the people being name in your story. The only thing I would like to add is the city you live in, to show the problems experienced is not just in one area, but a national problem. However your story may not be about a problem it may be about stories of recovery to give hope to other carers who may read them.
Other Stories:
How could anyone have foreseen, that beautiful June day, 15 years ago,
when John walked out of a school exam, that it was the heralding of a
dark, deeply , mysteriously, hidden illness, that would, from that time on,
plague him, at times overwhelm him and finally seduce him into taking his own
life.
No one could know, not even us, his parents. We who knew him best of all,
who loved him dearly, not even we, could see the signs of an insidious illness
which would, in time, take our beloved son from us. 
John was born in 1974. He was our second child and was 16 months younger
than his eldest sister – a younger sister was born seven years later. As the
family grew, so did their love for each other. The eldest two were particularly
close but as they got older John became the big, strong, much-loved brother to
both girls and enjoyed a close relationship with both sisters. He was
intelligent, inquisitive, energetic, funny, loving, kind, giving and often
exasperating. We all accommodated his boundless energies as he grew but it did
get in the way. We began to get reports from school, that he was very spirited.
He found it difficult to concentrate, wasn’t reaching his potential, talked a
lot. If he could just settle down he would achieve much more. Fortunately, at
first school, he had a very devoted teacher who tried to understand John and
helped him channel his energies instead of crushing them. Unknown to anyone,
this lively spirit was belying something far more menacing than we could ever
have contemplated.
(John is the one holding the bottle in photo)
At about this time, he began to wonder what would happen if his father or
mother were to die. What would happen if there was a war? When he saw animals
that had been killed, by the side of the road, he became unusually distressed
and would think about it very deeply and it would play on his mind. He never
told us, at the time, about any of these deep thoughts and if he had done we
would have probably just thought it was a natural part of growing up. It was
later in his life that he tried to explain to us the macabre thoughts which
plagued his tormented mind.
School continued to be a challenge for John, not from an intellectual
point of view but from the area of behaviour. He found it increasingly more
difficult to pay attention. His reports and parents evenings said the same
thing, term after term,’ intelligent pupil, but must try harder to achieve his
potential.’ John never missed school, never played truant and always did his
homework. On the face of it, he was doing ok but needed to apply himself more.
We drew his attention to this reoccurring fact. Little did we know, he was
fighting his own relentless battle with his increasingly more chaotic mind. Then
an incident occurred which was totally out of character. It was June and exam
time. Our capable, 14 year old son, walked out of a maths exam, walked around
school for 20 minutes whilst having a panic attack, then, with the encouragement
of a teacher, went back into the examination. The end of that school year, he
gained 9 grade A’s and won the form prize. What was there to be alarmed about,
he was doing fine and we were very proud of him.
BUT with hindsight, alarm bells should have rung at that first ‘out of
character incident.’ This was the defining moment when we should have sought
help and advice. Instead, as I am sure many parents do, we explained it away. We
did not want to put pressure on him. We did not want to draw attention to
something which, in itself, was nothing much to be concerned about. If only
we had known of the deep anxiety that was building in John’s mind. If only
we had understood the seriousness of the ‘out of character’ panic attack.
Recalling that occasion, we were concerned and wondered why he had walked
out, why he had panicked. We discussed it with him and reassured him that there
was nothing to worry about. We did keep an eye on him from this time onwards.
Unfortunately, we did not seek any professional advice and neither did the
school give us any indication that we should be seeking medical help. Then,
something, maybe parent’s intuition, began to tell us, all was not well.
We suffered the loss of a beloved grandma. John, who was
particularly close to her, did not cry or seem to be unduly upset. That was very
odd, but again, we explained it away. He was dealing with it in his own way.
Maybe he does not want to talk about it. This was his much loved nana,
why wasn’t he grieving? We did ask ourselves these questions but I guess
we did not want to disturb him and make more of the situation than he would
want. He himself had not complained of feeling down or not being able to cope.
Why did we not seek advice? We were once again lulled into a false sense of
everything being ok.
John was a sociable lad. He always had plenty of friends to do
things with. He went fishing, camping, cycling, sports - all the usual
activities lads are involved in. He enjoyed reading, sketching, painting and
went hill-walking with his dad. He was always busy with one pursuit or another.
He had good relationships within the family. He was a respectful son, always
pleasant and helpful, never any trouble.
Then, one day, we realized his fishing gear was gone. When challenged
about its disappearance he said he didn’t like going to the lake anymore as it
made him sad. Sad, why? The place he had loved to go and spend hours was now
somewhere he did not want to visit. We questioned him to make sure he hadn’t
had an unpleasant experience there. No, nothing like that, he just got sad when
he went there. We were dumbfounded.
Still, again, we reconciled it in our minds and thought, he’s growing
up and he has many other interests.
About this time, John was put on report at school because of his lack of
attention and disruptiveness in class. He wasn’t badly behaved, more of a
nuisance. He didn’t seem to be able to stop himself. At the time, he told us
he felt it really helped him, being on report, because he had a reason for
having to tow the line. It had the desired effect. He got on with his school
work and achieved good results. When he was 16 he left school with very good
GCSE results and we were all thrilled with his achievement. He was relieved to
be leaving school. We did ask him to consider Sixth Form but he was adamant that
he had had enough of the pressure of schooling. We felt it had taken a lot out
of him and realized he was not comfortable with the pressure that school
brought. As parents, we felt disappointed, but it was his choice, so we let him
make his own decision.
During his last year at school we were aware of changes in his
personality. He became more quiet, lack of interest in things which he used to
love, a sadness which was not right for a child of his age. Going out and
pursuing unhelpful things which he had not done before. What was the problem?
Where had the fun loving, energetic lad gone? His smile was lifeless, his eyes
sad and longing, on occasions, his whole demeanor resembled a frightened, lonely
individual. It was painful to watch all these changes and not know why they were
happening. What was the problem? We asked this again and again over the ensuing
years. Eventually, we learned what was plaguing our dear son. He had depression.
We had no idea young people could have depression. It was something adults, with
problems got, not young people from stable, loving home, backgrounds. We were
still asking WHY ? Nothing added up, nothing made sense. John, by now, was
visiting our family doctor. He began taking medication. At times it helped but
often the depression would grip him and take his vitality and joy from him. He
would feel very low. He sometimes wrote and spoke of dying and being scared for
life. It was very alarming and we were forever anxious for him and his
well-being. There were times of fun and laughter but they were short lived. The
down times of depression were more the norm than the exception.
My recollection of fifteen years ago, is that depression in young people
was not talked about as depression. I do not remember reading anything that
would have helped me recognize or understand the pain our son was going through.
I don’t recall being given any literature, as my children grew up, about signs
of depression in young children or teens. We were quite rightly warned of signs
of childhood illnesses, told breast was best, boldly encouraged to get our
children inoculated against childhood diseases and more recently given much
literature to help us know the first signs of the dreadful illness, meningitis.
We were given helps about discipline, good eating habits, right fitting shoes,
the proper way for children to clean teeth but never do I remember getting any
information on their mental health. I believe that is because it has only
recently been something which paediatricians are understanding themselves. I am
sure there has been a concern about some behaviours in children but we parents
have blindly gone on thinking that our children, with proper care and love will
grow up healthy and ‘normal’.
I was certainly one of those parents back in the 1980s, who assumed
that my child was well if all that he got wrong, was the occasional sore throat,
earache and annoying verruca on his foot. How wrong I was.
In 2003, there is much more knowledge and literature about mental illness
in young children. BUT is there enough literature in doctors’ surgeries, in
magazines, on television. I am convinced that parents with children whose
behaviour is giving them cause for concern, do not realize that they could
POSSIBLY be displaying the early signs of some mental illness or depression. No
parent wants to even think about that for their child. However, if you are a
parent whose child is for some reason not fitting into school comfortably, who
is hyperactive, who gets angry easily, who has rapid mood swings, who throws
tantrums, who is non compliant, who is a troubled soul, I would be at least
asking the question with my family doctor. If these signs are temporary then
they are most likely part of growing up. However, if they persist and give cause
for concern, make a point of visiting your family doctor. We are
often embarrassed and think that somehow their behaviour may be a reflection on
the way we have brought them up. Just remember, if your child is not well
mentally, then most likely they cannot help their behaviour. What ever is going
on in their minds is too strong for them and they cannot help themselves.
However, there is help. Therapists can help your child and so can modern
medications. A correct diagnosis takes time and attention BUT it is the key.The
sooner the problem is spotted and help is given, the sooner your child will feel
better about themselves and life. You will have done your best for your child.
This article has been written in loving memory of our dear son John , who
took his own life in April 2003 aged 29 years.
John suffered from Manic Depression, an incurable mental illness. He was
brave, courageous and most of all very easy to love. We all miss him so much.
If this article encourages others to seek help then it will have
achieved what it set out to do. I am happy to correspond with anyone who may
have questions which I may or may not be able to answer but I am willing to be a
listening ear and help if I can.
Julie Oct.2003 Derby uk
Toothbrush
story.
This little story came about in an email between myself and Julie
You reminded me of this when you talk about your boys and them
tidying up after themselves.
Anyway, in an effort to rehabilitate John and help get his mind
ordered, when he was very low and depressed, we talked about the little things
he could do.
I suggested that when he brushed his teeth with his electric
toothbrush, he shook it and got the excess water from it so that when it stood
upright, it didn't continue dripping and leaving a gooey mess on the window sill.(
where his brush was, there was always a mess and I thought, 'oh for goodness
sake just shake your brush and wipe it before you finish with it)
Anyway, he agreed and said he would remember to do that. Everyday I
would look to see how that was going and judging by the gooey mess, not very
well. Not wishing to stress him out, I would wait for an opportune moment to ask
him how he thought it was going!
How's the toothbrush routine going John, I would ask.
OK, isn't it? says he.
Well there is still stuff there. says me.
Well, I'm shaking it off. says he.
I thought, yeh right! thinks me.
Anyway, we never made any inroads into that, so I thought. When John
died, I took his electric toothbrush for myself. I use it twice daily .
And what is there, left at the bottom of it, every time?
A gooey mess.
I shake it, wipe it. Still a gooey mess. Bless him. I often chuckle
to myself.
So he was trying all the time. Bet he's laughing now, eh! Julie
