Front Page 1 Who is to Blame 2 The beginning 3 Getting Help 5 What I did 6 Challenging the System
4
The
Affect Caring had upon the family and myself
I know before I start this chapter is going to be long. The bulk of support came from me, perhaps because I am a mum and it is inbuilt into mothers to want to protect and help their children. No more than the animal world really, I have an aviary with 17 birds. Birds are one of the most placid creatures you can come across except when they are nesting and have young. One particular bird I have a female cockatiel is really friendly and affectionate. When she has eggs or young she turns into a ravaging pit bull and would take your hand off if you went near the eggs or young. I can hear the comments now; he is an adult not a child. Well read on and perhaps you might see I did not treat him like a child, I treated him like my son. And helped him through this the best way I could. Without the support I needed.
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When Steven returned home from the unit he was still very ill. He slept a lot, did not have much interest in anything. Because of his symptoms he could not concentrate on even reading the newspaper let alone a book. He could hear voices coming from the tv, it was more from the background noise on the programme. If there were a lot of people talking, his perceptions of this were they were talking about him. He stopped watching the TV and stopped listening to his hi fi because of this. He seemed to have nothing in his life, just sleeping or sitting in a room, no noise and no stimulation. He could not be either bothered or motivated to wash, shave or even change his clothing. He stayed in his dressing gown day in day out. I would prompt him to change his underwear, try and coax him to wash. Mostly he would go in the shower. One day I suggested he had a soak in the bath, maybe it would help to relax him. When he got out, I went to pull the plug out and the water was as clear as when he went into it. I realised he was not using soap or washing himself it turned out the same when he went for a shower the soap was dry. He just stood there and let the water run over him.
I was working part
time four mornings a week, leaving the house at 6.30am.
Steven was very paranoid, would
not leave the house. He was still very vigilant, had this fear the IRA were
going to kill him and his family. He did not sleep very well at night, every
sound he heard he was out of bed he slept with a pool cue beside the bed. First he would come into my room checking his
dad and myself were safe. Then he would be down the stairs taking the pool cue
for protection, checking the house
for intruders. This would happen 6 times plus a night, each time he would wake
us up.
Being woken so many times during
the night was starting to take its toll. Stevens dad and myself were both
getting stressed by constantly being woken during the night and having to get up
so early for work. I started suffering from sties (infected boils in my eyes)
through the lack of sleep. I was also constantly worrying about how Steven was
while I was at work.
I remember trying to talk about
my worries to work colleagues, I remember some smirking I even tried speaking to
a manager about it and got the same response. Nobody understood and there was
nobody I could talk to.
Not long after Stevens release
from hospital he started vomiting for no apparent reason. He would be sat there
and all of a sudden he would cough and what ever he ate or drank came up. I
remember mentioning this to the CPN. She suggested he might be bulimic. I knew
what bulimia was and said that it happened in front of me, he did not make
himself vomit. Then it was suggested it could be stress, I was not over
convinced about this reply.
Because of the vomiting Steven
became even more paranoid and started thinking the IRA were getting into the house
and poisoning his food. The result of this was he would refuse to eat. I would
spend hours trying to persuade him and reason with him. This went on for months
and months. Eventually he started to eat, the more that went down the more he
would vomit up. The food theory was replaced by water. Steven thought the water
was being poisoned before it came out of the tap. When I pointed out we no
longer had a tank in the roof and there was no way anyone could put poison into
the water and the fact it was only him vomiting nobody else was doing it. This
idea switched to the water in the kettle being poisoned. Every time he used the
kettle he would pour any water out and refill it. Obviously this still did not
make a difference, and then it switched to the coffee and tea. Still he was
vomiting.
All of this was taking its toll
on his dad and myself; we were still being woken numerous times a night. The
vomit was going every where because it came up without warning, on the carpets,
furniture, his bed and the floor in his room, if he tried to get to the toilet
he rarely made it. Then there would be a trail a vomit behind him.
I started to have bins all over
the house lined with carrier bags, in the hope if he had one beside him he could
get to it quick enough to avoid it going on the furniture or floor. Sometimes he
made it; most times he could not react quickly enough.
All I seem to be doing is
constantly cleaning up vomit behind him, he would attempt to do it but I always
ended up thoroughly cleaning it. Then Steven started pleading with me not to go
to work, every day he would get up around 5.30am and beg me not to go. I thought
it was because he was afraid of being on his own. I got a family member to be at
my house when I left for work at 6.30am and stay there until I returned at
2.00pm.
Quite a few years later I
discovered it was not that he was afraid to be on his own, he still had this
fear I was going to be killed.
Stevens
CPN had to be changed because the other one was going on a course. The new one
who was allocated to Steven never actually got to meet him. For some reason
Steven took a dislike to her surname “Brag” for some reason the name made
him paranoid and suspicious of her. He did not want to see her. I phoned the
psychiatrist explaining this asking if it would be possible for Steven to have a
different CPN. It never happened. Instead the psychiatrist decided Steven would
not have a CPN? For the following 3 years Steven had no support what so ever. I
often visited our GP asking for a CPN for Steven. His previous CPN seemed to be
on the verge of getting Steven to do things. Each time my GP wrote she was
ignored and did not receive a reply. I think she thought I did not believe her.
Twice she phoned the clinic while I was sat there and still got no response. So
much for care in the community.
Steven started to follow me
everywhere, sit on the stairs if I went to the toilet, and follow me into the
garden when I hung out the washing. Every month I went to the bank to pay my
bills, Steven would not leave the house any other time but would come with me to
the bank. He would not go on a bus or in a taxi. So we walked into town Steven
was vigilant all the way we went. I would try to persuade him to go to a café
without any joy. As soon as I paid my bills we would turn around and come
straight home. Luckily the bank was only two miles away. It was as if he was
trying to protect me.
All of this was starting to have
an affect upon me, it tormented me how this illness was affecting my son. It was
also affecting me mentally. The stress followed with depression over the years
to come I had 4 bouts of depression, each time ending up on medication myself.
Steven could see I was getting stressed and then he started to think I was being
poisoned. He blamed the tea, coffee and sugar he would sift through it looking
for signs of drugs or any other substance. This only added to the stress I was
feeling.
When I got home from work, often
I could not get into the house, because Steven had locked himself in and would
leave the keys in both outer doors. Behind this was the fear that the IRA or
somebody else had a key to the house. How else would they get into poison the
water, tea, coffee ect? Steven slept a lot and would more often than not be in
bed when I returned home. It often took me 10 – 20 minutes to get him to wake
up and let me into the house. This in itself was frustrating especially if it
was raining.
His constant vomiting everywhere
started making me feel paranoid that my house smelt. His bedroom was the worse,
if he had the door open the whole house stank, with a mixture of smoke through
his constant chain smoking and the vomit. I spent £200 on a carpet shampooer;
to be truthful this was a god’s send. I also bought electronic air fresheners,
the type you often see in public toilets battery operated that automatically
spray air freshener every 10 minutes.
Slowly he started to leave the
house, only as far as the shop and back. He started buying alcohol his
consumption grew and grew. The psychiatrist said he was self medicating. The
vomiting went on and on. One day Steven came down with a leaflet that was in the
packet with the medication. One of the side effects was nausea and vomiting. He
never felt nauseas but he was vomiting. I pointed this out to his CPN, GP and
Psychiatrist. The psychiatrist blamed the alcohol, He also told the GP the same.
I then pointed out he was not using alcohol when the vomiting first started. He
would not listen to me and to this day I cannot understand why.
Although I have come up with a
few theories, one is confidentiality. Then there is the one that states he has
to ask for the help. What if he does not realise he needed help. What has any of
this got to do with listening to the people who are with the individual 24/7? Or
is it about “ I know best because I have the qualifications”. Even now I
cannot work out why.
The vomiting went on for over 7
years; intermittently I contacted the psychiatrist and GP. Regarding the
vomiting. The GP took the most notice by this time Steven was complaining of
pain in his stomach and chest. During this time he was sent for various test all
came back with negative results. But each test revealed Steven had an inflamed
and swollen gullet. I have seen Steven doubled up with pain and twice he brought
up blood. The acid constantly coming up into his throat when he vomited must
have caused the pain.
The result of his constant
vomiting and alcohol abuse was that he was being banned from public houses
locally. Family did not want him in their home; people did not want to be with
him. He also gained the nickname of puke head. Because he would often not go out
but at the same time would not stay home alone. When his dad and myself went to
the social club he came with us. At times he vomited when he was out with us. I
would get tense inside every time he coughed, expecting him to vomit. This drew
attention to him and us; people would look at him in disgust. Nobody seemed to
want him, this also affected me. I became defensive towards people even though I
could understand why they acted this way, wherever he went he seemed to be
shunned. When a few years had passed, even I was beginning to wonder if the
psychiatrist was right and it was the alcohol making him like this.
Every time I entered the social
club, I was getting Steven done this or that, usually to do with vomiting. The
secretary of the club seemed to have a bit more understanding for Steven and
would often stand up for him, possibly because he was ex forces himself. I was
getting fed up with hearing complaints every week I went out. Sometimes Steven
admitted something had happened often he denied it. I was never too sure whether
he was telling the truth. One evening he came in worse for drink, he went to the
toilet. I got his brother to go check he had not vomited or left a mess. He had
not, and not long after Steven went home. The following week we went to the club
and were told Steven was being suspended because he had vomited in the toilet! I
knew this was not true and defended him, without success.
Incidents that stick in
my mind through the vomiting;
Steven was suspended from the
social club, so he went with his brother to a pub up the road. My husband and
myself would leave the club about 9.00pm and go to where Steven was so he had
someone to go home with. One evening we were a bit late leaving and Steven came
to the club to make sure we were still going to pick him up. As soon as he
walked through the door the steward and another male went up to Steven and told
him to get out, they would not even let him speak to me. I did not see this
happen, other club members told me. I was furious about this; he had not
committed a crime but was being treated like a criminal.
I also made an appointment to
see the director of MH, told him my story. After a long conversation, the
director suggested he might have an ulcer. This was about 6 months after Steven
had been suspended from the club. I went to the club the following weekend and
approached the steward. Asking if I could have a word with him, his answer was
if I have anything to say to say it there. He was worse for drink himself. I
told him what the director said, he flicked his hand at me in front of people
and said “Go away, I am not interested” That was the final straw for me, I
am afraid I lost it. I hit him about three times in the chest at the same time
shouting at him. I have never done anything like this in my life before. Then I
was suspended! Luckily or unluckily for me, there were two committee members
stood beside him. I later found out one of them said to the committee if I was
banned he was going to resign from the committee and never enter the club again.
I did not want to go back, but I did. More out of defiance. He was not going to
treat my son like this. After the committee hearing Steven was allowed back into
the club only if either his dad or myself was there.
Another time Steven went out and
drank quite a lot, I was on my computer, and it was around 12.30pm. I heard this
noise coming from Stevens’s room. I went to investigate and found that Steven
had vomited he was unconscious and choking on the vomit, it was everywhere all
over his face, in his hair and over the bed. I pulled him up and turned him over
and started banging his back. He started breathing normally and then I got him
into the bath and washed him, using the bathroom bin to pour water over his
head. If I was asleep that night, I am convinced Steven would now be dead.
Following
the incident at the club it triggered yet another bout of depression. This time
I went down and down. I can remember sitting in this room thinking, what a state
to get in. My son is on medication and I am taking medication to help me to cope
with caring for him. In my mind I was trying to talk my way out of this, telling
myself I could get through this. This time it did not work, I stopped doing my
housework, did not want to go out, could not be bothered to open my mail,
stopped cooking meals for the family. The mail was piling up, I could not be
bothered to pay the bills (something I have always dealt with) I was getting red
letters then threatening letters of action being taken. I never mentioned it to
my husband. I started comfort buying I suppose. Over the Internet, mail orders.
Buying things I did not really need, often for my grandchildren. Things reached
a pitch I felt like I needed to get away. I got a relative to stay with Steven.
I remember it was peak season, July. We could not really afford it, but I booked
5 days holiday. With the mail order and the holiday my debts were over £1000.
Eventually I told my husband and he just panicked. Up until now I have always
coped with the money and bills and would not have dreamed of getting into this
sort of debt.
Through the GP surgery, I
referred myself to see a counsellor. I was diagnosed as bordering on clinical
depression. My weight started going up; my clothes did not fit me. I felt like I
was in a mess. I was still caring/supporting Steven
Still vomiting and still thinking he was being poisoned, every thing he ate drank or smoked he only had half of it. Half a drink half a cigarette because he thought it had been tampered with. Steven could not leave the house unless he had drank half a dozen cans of beer prior to.
We were still being woken at
night, I could not go anywhere unless Steven came with me and I was constantly
cleaning behind him. The stress was getting to me again, I started using alcohol
in the beginning mainly to help me relax and sleep. This went on for about 5
years, and then I started to feel like a drink during the daytime. I did this
once and the alarm bells started ringing I needed to do something about this
before it really got a hold on me.
I was still working, because I needed the money. Then I heard about carer’s allowance, I worked it out if I cut my hours down to two mornings a week and claimed carers allowance I could most likely manage on this money. This is what I did. I worked two mornings a week at weekends, I stuck to my original rota of two weekends in and one off. By going out to work less, the pressure started to ease within a year I had completely stopped the alcohol. I was also able to monitor Steven more closely. I came to notice that the closer to the time he had taken his medication the more frequently he vomited, the frequency lessened the closer it got to the time for his next dose. The down side of working less was that I was home more and I became isolated in a way. I missed my work colleagues and I missed going out of the house. I started to go down hill again and this time around it was worse than the previous 3 times. Everywhere I went in the house people who were stressed surrounded me. Stevens dad was stressed, Steven was stressed and so was I. I started to feel like I needed to get away from this, but I had nowhere to get away too. I started retreating to my spare bedroom and spending time on the Internet. I stopped watching TV, I use to like watching East Enders, the Bill and Casualty mostly. I have stopped all of this and started playing games on the internet. Scrabble, Domino's or solitary word games. Joined various websites some sending emails from other members. Some might find this boring, I find it relaxing, somewhere I can have my own space. That is the one thing I have missed since Steven's illness, my own space. Time to myself.
Eventually I went to my GP, I
was given anti depressants again. I remember sitting in the spare room feeling
there was no way out of this. I cannot say I thought of suicide but I felt I
would be better off dead.
Things also became strained between me and my husband, I did not want to be with him, I did not want to be with anyone. Our relationship started to suffer, I can see now my husband was also going down hill. Eventually I started talking to him and realised we were both reacting to each other. The more stressed I got the more he got stressed, the more he got stressed the more I got; this was also having a knock on effect for Steven. Slowly the medication started to work and I started thinking back to the beginning when Steven first started to vomit when he was not using alcohol. After all of this time I thought it was a long shot, I was not too sure I was right any more. I felt it was worth giving it another go at getting somebody to listen. Just to see if I was right or wrong about the medication, even if I was wrong it was worth ending up with egg on my face, just to be sure.