|
"Because of the void."
Jane asked him to explain.
"Basically," he said, "there is nothing there. Just a void."
"In your head?"
"Yes"
"In the world outside?"
"Yes."
Jane couldn't understand. She asked him to explain. He dashed to the
computer and typed 'void' and 'Buddhism' into Google. He rushed back with a
printout of the first result. It included the following:
"Form is emptiness; emptiness also is form. Emptiness is no other than form;
form is no other than emptiness. In the same way, feeling, perception,
formation, and consciousness are emptiness. Thus, Shariputra, all dharmas
are emptiness. There are no characteristics. There is no birth and no
cessation. There is no impurity and no purity. There is no decrease and no
increase. Therefore, Shariputra, in emptiness, there is no form, no feeling,
no perception, no formation, no consciousness; no eye, no ear, no nose, no
tongue, no body, no mind; no appearance, no sound, no smell, no taste, no
touch, no dharmas, no eye dhatu up to no mind dhatu, no dhatu of dharmas, no
mind consciousness dhatu; no ignorance, no end of ignorance up to no old age
and death, no end of old age and death; no suffering, no origin of
suffering, no cessation of suffering, no path, no wisdom, no attainment, and
no non-attainment."
I mean no disrespect to Buddhists when I say that I don't understand any of
this. However I can understand it can be an aid to meditation and to trying
to see the world we inhabit in a different way. However Sam talks like this
lots of the time. It is the world he inhabits. For him it is the real world.
He got cross when Jane didn't understand.
"You're like the doctors. You don't understand. That's why I don't tell them
anything of this."
When Sam talked more of the void he explained that if there was nothing
there then there was no point in anything. This was leading into more
worrying directions especially when he kept reiterating this point.
I joined in and talked with him of the different realities in his head and
the need for him also to work hard at that reality that involved interaction
with friends and family and ward staff. He understood this.
"But that's what I've been trying to do for the last few years. I keep
pretending. But it's just pretending."
He said that the world that we inhabit was not nice. Everyone was always
fighting and arguing and judging each other.
"I know I'm different from everyone else. I'm living on a different plane
and just feel nothing is there. It's not an unpleasant feeling."
"What do you feel," asked Jane.
"I feel frightened. It's kind of scary."
........................
Sam's sister Nell is home from university at the moment. She is off out with
friends tonight. Several arrived earlier. Sam was eager to chat with one of
them when she arrived. She is attractive and maybe she can persuade him of
the delights of being in this reality than the one that is a void.
Others arrived and suddenly the house was full of young women, dressed for a
night out. Mobile phones had been going all afternoon. Plans were constantly
changed and suddenly Nell was preparing a snack for her friends at the same
time as Jane was preparing dinner for herself, me and Sam. This was further
complicated by Sam deciding he was vegetarian half way through the
preparation. (Usually he is the greatest meat eater whilst Nell is
vegetarian!) It all worked out in the end and Nell and friends disappeared
in a blaze of long legs, bare midriffs and layers of make-up. I'm sure Sam
would have loved to have been joining them. But he needs to decide which
reality he wants to be in.
He seemed withdrawn after they left with all their enthusiastic life and
vigour. Not just withdrawn. His body language was that of when he is poorly.
He had a glazed almost zombie look on his face. He later perked up a bit,
played cards with Jane and then settled down to watch television with us.
........................
This evening we were watching a drama on television. Sam suddenly claimed
that he knew what was going to happen next on the programme all the time. We
suggested he might have seen it before. It was a repeat.
"No. I can see what is about to happen."
Sam has often in the past claimed to be able to see a short distance into
the future.
"Just then! I knew what she was going to say!"
For Sam, that proved it.
........................
We allowed him a single glass of wine. A little later he was writhing on the
floor doing some kind of exercise and waving his cigarette lighter above
him. Soon after that he was laying stretched out on the sofa with his eyes
staring wide open totally still. I motioned to Jane and she touched Sam and
said something. He came round and then slept for a while before watching the
rest of the programme. He seemed fine later.
........................
I'm describing today not as an extreme - but just as a typical day when Sam
is actually quite well.
It is disturbing that he is on his maximum medication, that he seems still
quite poorly and that we're not sure - even with a good medical team - that
the mental health staff observe anything of these experiences that we see
when he is at home.
// posted by Mike @ 10:57 PM
Thursday, April 08, 2004
I've just been trying to do some tidying up of the links and to add a few
more general ones - including some that link to me.
I have fewer visitors from the UK than from elsewhere and would like to
increase my hits from the UK. If any of you can suggest places to put my
links or can spread the word - I would be very grateful.
// posted by Mike @ 11:00 PM
Tuesday, April 06, 2004
Sam came home to stay overnight on Saturday.
We were having a small party for our French friends and thought it might be
nice for Sam to join in. The ulterior motive was that we could both have a
drink and not have to worry about driving Sam back.
When I picked him up he looked great. He was wearing his glasses, which I
thought he had lost. He looks kind of intelligent and distinguished in them.
They certainly helped him look better.
Maybe it is also a good sign that he is looking at the world outside as well
as the world inside his head.
Sam was in the room as I was having discussions with our visitors. I tried
to draw him in to the conversation. Although he seems well he was incapable
of discussing any of the issues we were talking about - social and political
- in a meaningful way. I'm not surprised by that but it was a measure that
although he is seeming well he is so far away from that intelligent,
articulate young man who was studying for a degree only a few years ago. I
wonder if we shall ever see him again.
I enjoyed the party. Sometimes I am stressed by the thought of having to
meet lots of people but it went well and fuelled by a couple of glasses of
wine I really enjoyed chatting with people I hadn't seen in a long while. A
couple who are keen semi-professional photographers admired some of my work
which made my day! I took a few snaps of them to show off the flexibility of
my new camera and they were eager for me to send them copies.
Sam joined in a few conversations. I heard him answer when asked what he was
doing now, "Oh, I live in a mental home." To give them their due they didn't
blanche or back away but I think it was the end of the conversation.
Sam then got into conversation with another young man who lives locally -
the son of a friend. He is a Buddhist with which Sam has some sympathies.
But this guy describes it almost as one would a cult and talks of teachings
in a monotone speaking a remembered script. I find this disturbing. Although
young with a small child he is separated from his partner and seems in some
ways dysfunctional. They were able to converse for ages. He thought Sam
seemed the best he had ever seen him.
Sam slept a lot on Sunday but was able to visit friends and put on a
positive front and also coped with a large gathering for dinner.
On Monday our friends left. I was - and am - totally exhausted. I think that
being so busy together with the stress of the last few weeks has just taken
its toll on me physically and emotionally. On Monday evening I just couldn't
cope with a conversation with jane about a meeting she was to attend today.
She was very understanding but sometimes finds it difficult to accept me not
being fully well.
I think I just need to look for some more space again.
// posted by Mike @ 2:00 PM
Friday, April 02, 2004
On Wednesday Jane phoned the ward. The ward manager was really positive. Sam
seemed well. Much more like his old self. She didn't know how to put it but
. . .
well, he just looked like Sam.
When Sam is really poorly, he does look different. His body language and
facial expressions really are unusual. You can tell straight away.
He had told her he was no longer living in the spirit world.
Thursday I picked Sam up to help my parents move house. I hoped he could
help with some of the lifting. He seemed fine and was keen to stay for
dinner to meet some friends we have staying from France.
He seemed a bit vague but okay.
I didn't know I was angry about his adventure at the weekend when he had
gone awol from the ward, smoked cannabis and been picked up by the police.
It was only when I found myself having a go at him in the car. Why had he
gone off without telling anyone? Why had he done this to worry us when we
were away? Why had he taken cannabis again?
There were no answers but I was saddened by my own reaction - though in some
ways I think it is reasonable. He needs to know the effect his actions have
on other people. But then he is also ill. His actions are not necessarily
rational.
When we stopped in the car to drop off some belongings at my parents
temporary accommodation Sam sat in the car staring - as if in a dream world.
I waited a while and then asked what he was thinking. He said he had been
confused. He thought his granny and grandad were going into a care home.
We had discussed very clearly what really was happening so he would
understand.
Later I had a chat with him. For ages I have wished I had a tape recorder to
remind me of his words. Later I can never remember. There were two main
things he said that I was trying to keep in my mind but they have gone.
I don't know if it is my own short-term memory problems or just the fact
that much of what he says makes so little logical sense and is so confused
that although it can be fascinating at the time it is impossible to recall.
I do remember a discussion about Sam's ability to control other people's
thoughts. It became an intellectual discussion about the effects any of our
thoughts can have on others. Clearly anyone's thoughts and moods can effect
others but Sam has a belief in an underlying causal effect between his
thoughts and other events. The more poorly he is the more overt he is about
this relationship. He refused to accept that his thoughts could not directly
affect my thoughts.
My French friend rescued me. He took Sam for a walk while I prepared a meal
and then beat him at chess. Sam was surprised - and a little upset by this!
Today I have been busy entertaining our friends and helping move my parents.
My parents are in their eighties. The removals firm was an hour and a half
late, the new owners could not be allowed in to the house because the cheque
hadn't cleared, the burglar alarm went off and wouldn't stop - eventually
fusing the house electricity, their car - laden with all the last minute
things that hadn't already been taken - broke down, there was a message from
the house builders that their new apartment wouldn't be ready for a further
four weeks and they forgot the kettle and the milk!
And I think I've got problems!!!
// posted by Mike @ 9:34 PM
Wednesday, March 31, 2004
When we arrived back on Monday we phoned and Sam seemed fine.
Tuesday I did various jobs and then popped over to see Sam about six.
I met a nurse at the ward. His first words were to ask how I was. It felt
genuine and very thoughtful.
Sam had gone for a walk. A doctor had seen him first and felt confident that
he was okay to go out on his own. Sam had been asked to get back by six. It
was about that time now.
I left him some tobacco and said I'd have a look out for him. I drove to his
usual spots for a walk but didn't see him. I was worried he might have gone
off again. He could be on a train to anywhere.
I drove home and helped Jane prepare dinner. I got a phone call from the
ward. Sam had arrived back. They are so kind. The nurse I had seen on the
ward had been confident about Sam going out for the walk but, without
showing it, had realised that I would be concerned. So as soon as Sam
returned he phoned me.
It is thoughtfulness like that which helps keep us almost sane.
...........
Today Jane phoned the ward to see how things were. The ward manager was so
positive. Sam had said he was no longer in the spirit world and all those
things he had said about seeing dead bodies up in the hills - well people
must have just misinterpreted him!
His body language was different. She found it difficult to explain but he
suddenly looked like Sam again. You could see it in his eyes. Last week he
had just looked like someone very poorly. We can recognise Sam's state of
health by looking at him. It is great to know that there are others who are
also getting to know him so well.
// posted by Mike @ 9:19 PM
Tuesday, March 30, 2004
Having made the decision to go away for the weekend I straight away felt
better.
However just before we left we discovered Sam hadn't taken his additional
medication.
I wanted to rush up there and persuade him. We can't be there for him all
the time but it brought back the guilt of going away at a time of possible
crisis.
I tried hard to put it out of my mind. We were going away.
We met my sister on the Thursday evening, had a meal and a few beers. It was
good to be away.
Friday I went into London. Some time during the afternoon I started to
ponder things and became a bit emotional. I went to St Paul's Cathedral. I'm
not religious but I've always liked St Paul's. It seemed a good place to sit
and think calmly, to gather strength.
Outside and inside was covered by scaffolding for repairs. Evensong was due
and parts were closed off and people waiting and chatting elsewhere. There
was no atmosphere of calm.
I left.
I walked across the millennium bridge towards Tate Modern.
The light on the river from the sun beginning to get lower in the sky was
striking. I walked to the centre and looked at the light playing on the
waves then looked the other way to the view of Tower Bridge. I'd been there
earlier in the day looking across to the Tower of London.
Although the bridge was busy with people passing both ways I felt more at
peace there than I had In St Pauls.
I walked along the embankment watching cormorants on the river.
I came to Somerset House and went through the main doors. A right turn and
then a left takes one up a wonderful rough hewn staircase. Two stories up
and one can exit into the courtyard.
Eleven rows of five water jets form a simple fountain. The complexity is
provided by the computerised system that changes the height of each jet
creating fascinating patterns of water and sound.
I sat on a chair at an empty table from the now closed cafe and watched the
patterns.
Someone walked by, looked at me and said,
"Now there's a happy man."
If only he knew! Though I was pleased I obviously looked contented. It was
what I had been searching for.
Another man played about leaping over the jets when they were low.
Inevitably he got caught out and a jet of water caught him between the legs
- to much hilarity from his companions.
Across the road I strolled past theatres lit up ready for their evening
audience. Bars were beginning to fill up with their after-work clientele.
Two strange looking men wearing fur coats and hats on such a mild evening
climbed into a taxi.
The taxis were clustering in herds as they careered down the wide streets
making crossing almost impossible.
Eventually I arrived at Covent Garden.
A busker outside with electric guitar had an audience of one. This was an
unkempt man dancing with a half empty bottle of wine waving in his hand.
Inside the basement courtyard a classical quintet played Mozart. Someone
came around with the hat and relieved me of a pound. They switched to Ravel
which was less successful and I moved on.
I met up with Jane and my sister in law, Sarah, who by coincidence was also
in London on a course. A couple of Sarah's friends joined us.
I was feeling nervous about meeting new people. Just my anxiety coming back
- but they were gentle and kind. I worried about timing the meeting up with
my sister. Suddenly it was getting complicated and I began to panic.
We went across the road for a pizza as I tried desperately to try to contact
my sister to arrange things. I knew we had to meet other friends soon.
The pizza was great - helped by the accompanying wine. The conversation
flowed and I began to relax into the conversation as long as I knew I could
opt in and out.
It worked out fine. My sister was just late enough so we had almost finished
and were at just the right time to meet her friends.
We walked across town together and met yet more friends in a city pub. It
was full of people enjoying their Friday evening in the city before
returning home to the suburbs.
I was worried about having to meet and be friendly with yet more new people.
It was fine. A couple of beers on top of the wine got my tongue moving and I
found myself in friendly but vociferous argument with new friends.
We eventually found our way home by train and taxi.
It had been a good evening. In the end I found a space for myself that
didn't include worries of Sam churning around.
. . . . . .
The next day we had coffee and cake for a late breakfast in Starbucks at a
local Borders bookshop. We had a lovely lunch together before getting the
ferry across to Woolwich. There's something special about a ferry - even if
it is only across a river. It's like going on holiday. The ferry was old,
with character, lots of mahogany paneling and seats and even sliding doors
to close off smoking from non-smoking areas.
We did some shopping and came home for a quiet evening in.
We phoned for a take-away curry and put on a video.
Jane phoned to check on Sam.
He had left the ward in the afternoon and had not returned. They were
concerned.
We ate the delicious curry and tried to concentrate on the video.
It was about a gangster who had depression. He cried at the television
adverts. They had done their research right. I've done that.
Eventually we had a telephone call from my parents. They understood Sam had
been picked up by the police and was safe. They were giving him a cup of
coffee. It makes a change. On other occasions he has been violently
restrained and hadcuffed.
When he was finally returned to the ward we were able to talk with him by
phone. Putting all the bits and pieces together he had got on a train with
no money to the nearest town, gone to the bank and withdrawn £5.40. We had
just drawn out most of his money so that he wouldn't have access to it. But
even with this small amount he had managed to buy some cannabis. He had then
gone on by train - again without a ticket - to another city where a friend
lives. Sam didn't have his address or phone number.
He met some people on the train and got off at an intermediate station with
them.
He got chatting with some people in the road and they obviously became
concerned. They must have asked him where he was from and then called the
police.
Sam jumped out at the police from behind a bush - just like he did with us
to surprise us, playing games as a child. We asked him why the police were
looking for him. He said they were looking for someone wearing an orange
jacket.
Which of course was true.
Eventually an ambulance was dispatched to take him back to the ward some
fourty miles away.
. . . . . .
I was tearful at the video, but all the stuff about Sam got to me.
But what made me tearful, as always, were the descriptions of kindness by
people. The couple who had phoned the police. The police that had made him a
coffee and who had stayed past their clocking-off time to wait for the
ambulance.
There is something so wonderfully moving about simple acts of kindness.
// posted by Mike @ 9:12 PM
Wednesday, March 24, 2004
I went to Sam's ward round this morning.
"Ward rounds" on psychiatric wards are very different from those on other
wards. You have this vision in the UK of the consultant going round the beds
with a retinue of flunkeys looking at the notes, checking the broken bones,
operation scars, healing of infections, progress in readjusting after an
operation and so on.
On many ward rounds on psychiatric wards a consultant may never see a
patient. He/she just sits in an office and discusses with nursing staff who
effectively make decisions as they have such influence over the consultant.
I was once told by a ward manager, "We make the decisions - we tell the
consultant."
Today's was better. On this ward patients/clients are often involved
directly. There are serious problems at the moment with Sam and it was
suggested we might like to attend. Jane couldn't come because of another
meeting so I went.
I arrived at the appointed time and was shown to the room.
"Would I mind just waiting for two minutes?"
Well - yes actually, but I was polite and said, "Of course not."
Ten minutes later I was still pacing the floor of the corridor outside.
I could hear voices inside but not what they were saying.
Eventually I was invited in. They weren’t sure if Sam was with me and so the
delay as they wanted to get up to date first. I was asked to contribute. My
views were the same as those of the staff, which was a good start.
Sam has been exhibiting seriously worrying psychotic symptoms over the last
two or three weeks even though he is now on the highest doses of medication.
He still refuses though Deprocate, a mood stabiliser, that they seem keen to
give him.
I'd seen him yesterday. He was looking forward to today when he was going to
negotiate coming off all his medication.
He has rarely needed it more.
The consultant explained that she would try to section him again if he
refused his medication.
We discussed the implications. We still have an outstanding formal complaint
against an acute ward in the most local hospital. They hoped Sam could stay
on this ward on a section as long as he was cooperative and agreed to take
his medication. If not he would go to the acute ward at a different local
hospital where there would be continuity with this consultant. This ward
staff are being very supportive. They are not staffed to support acute
patients but they recognise that if they can cope it is in Sam's best
interests and our wishes that he stay there.
We were agreed. Sam was sent for.
He started very articulate and sane. He wanted to reduce his medication. He
had good arguments. To any passing person he would seem to have a very good
argument. As the discussion went on he opened up about what was going on in
his mind. There were different realities. Why couldn't he be allowed to live
in those different realities? He experienced joy. He had visited Nirvana.
Who were we to insist on medication to dull his brain and prevent these
experiences?
He was articulate and clear. Until I asked him about the times when he was
like this and had put himself in extreme danger.
He talked of when he had fallen from a two-story building and was
comparatively unharmed. Anyone else in the room would have been crippled but
he was special.
This shocked and worried the consultant who recognised even more clearly the
need for him to take his medication.
Sam agreed reluctantly to continue with his present medication but refused
point blank to take the additional Deprocate despite my pleas that he
recognise professional staff were offering him advice in his best interests.
At times I was still proud of his ability whilst so ill to be able to
out-argue these very clever, highly paid people - whilst I was horrified by
the implications.
Meanwhile he was climbing all over his chair and unable to keep still. At
times he wood stare fixedly at the consultant or myself. He would go into
long pauses.
"Sam! Talk to me. Answer what I said."
"I was busy writing down all you said in my mind," he replied.
At the start of the meeting he seemed relatively okay.
The meeting was scheduled for fifteen minutes. We had used that before Sam
arrived. It was indicated we should finish now. It was an hour and a half
from the start.
I walked out with Sam and tried to chat lightly.
He said he was fine. No, the meeting had been no problem.
I had a go at him about the medication. I was forceful but calm.
He suddenly relented for no obvious reason. Yes of course he would take the
medication. Including Deprocate - the "mood enhancer" that he had been so
obdurate about.
We chatted in the outside quadrangle while he had a couple of cigarettes.
We lightened up but I asked him what had been going on in his head whilst he
stared at people in the meeting.
"I can see through people. I can see into their minds. Mostly there's not
much there. Though I pretend there is!"
We laughed and laughed.
He was probably serious but he saw he humour in it and could share it with
me.
It was a kind of bonding.
We saw the staff returning to the ward from the meeting.
Sam went and told them he would take the medication.
They were surprised but pleased. At least I think they were pleased. The
consultant psychiatrist had spent at least an hour trying to persuade him to
accept the additional medication to no effect. I'd done it in five minutes.
They like to be the powerful ones. I don't want to get on the wrong side of
her.
I popped out to buy Sam tobacco and then returned home.
On my return I tried to fill Jane in on all that had transpired.
As I tried to explain I suddenly realised how tired, drained and confused I
was. I went and got a glass of wine. Not a good idea.
I'd held myself together in the earlier meeting apart from once where I had
come close to tears. I stopped talking and few noticed but the nurse
opposite had looked at me with compassion in her eyes.
Now I found it difficult to string a sentence together. I was emotional and
confused. I couldn't remember what had happened or had been said in the
right order.
I eventually got it out in a vague semblance of actuality.
We are supposed to be going away for the weekend. Jane is speaking at a
major national conference. It's a real feather in her cap to be recognised
as a "national expert". I've been there before but am so far away from it
now. I know though how much it means to her and contributes to her own self
image, which in turn leads to her ability to cope and lead all this with
Sam. She is a tower of strength and yesterday was at a local high-powered
meeting, putting forward the views and concerns of carers so powerfully. If
we cannot sort it for Sam at least we might be able to improve the system
for others.
I was worried about going away. The next few days are going to be so
difficult. I wanted to be there for Sam. So often it has be the other way
round where I have said we must find time for ourselves and Jane had
insisted on concentrating on Sam.
In the end Jane got upset as well. She needed me to support her on this
conference. Suddenly it was me that was torn. It wasn't that I needed to be
there for Sam. In the end I had no reserves left for anyone. I just needed
some space to be on my own.
Our emotional discussions were interrupted by my parents’ arrival. They are
in their eighties and - partly at our instigation - are moving to a more
suitable house. There is a problem and they will have to move out before
their new accommodation is ready. They will be living in a caravan. We
haven't offered to put them up.
There is no way I can cope with all this and my parents living with us at
the same time. I can't even get the spare bedroom clean enough for some
friends visiting for the weekend!
The diversion helped calm the atmosphere. We talked about carpets.
Jane phoned the ward. They agreed it would be good for us to go away for the
weekend. We needed it. There was nothing more we needed to do - though I
know there is.
Sam's my son.
So we're off for the weekend tomorrow.
I'll let you know what transpires when we get back. I need to warn you. When
we've been away before disaster has invariably ensued!!!!!!!
// posted by Mike @ 11:13 PM
Monday, March 22, 2004
I had been writing about the first time Sam was sectioned. I want to publish
it here soon.
Jane asked to see it.
She was in tears. It was when she felt it went all wrong. Until then Sam had
been with us. Although we had virtually no support we were in control. It
was our love that was helping Sam progress.
Once he was sectioned all the control was passed over to the professionals,
It didn't work out.
There were very many good, kind and honest people who worked with Sam and
were trying to do a good job and genuinely cared.
But there were others who were cynical, abusive, rude, nasty and ...
... well, I could go on. I may do another day.
Because I have lost much of my emotional strength I have come to rely on
Jane - even though she suffered a breakdown a number of years ago. I worry
so much about her getting ill again as I know I can no longer cope myself
and could not again help her get better as well as Sam.
We both started today not at all well.
It is the worry for the future. Sam was doing so well on this ward since
leaving the acute ward. We really felt this was what he needed to make a
recovery. We believed if he kept taking his medication and kept away from
cannabis then he would become well enough to make rational decisions for the
future.
This relapse without any obvious cause is a bit of a blow.
Today confirmed it a little.
I visited Sam late afternoon. He had seen the doctor this morning. He told
her he didn't want to take the medication and refused - again - the new
medication she wants him to take to stabalise his mood. We are also a little
dubious about this.
He told me the doctor had said to him at the beginning of the meeting that
she was his enemy. He refused to believe that he could have been mistaken.
After this she "went a bit weird". He didn't want to discuss the issues.
His clinical psychologist from the assertive outreach team had visited him
this afternoon. Sam has some time for him - but he didn't talk with him of
the things he has been talking to us about. He only discussed his desire to
come off his medication.
I'm not sure what the psychiatrist and psychologist have said to him but Sam
thinks it will all be sorted at the "ward round" on Wednesday when the
consultant will discuss progress with Sam and ward staff. I think we may
need to attend the ward round then.
We had hoped to go away on Thursday for the weekend. I worry we may need to
revise our plans.
I went for a short walk with Sam. On the way back he asked for money to buy
some beers. I refused. We have agreed an arrangement.
"But it's my money. You have no right!"
"That's right but I'm not prepared to argue. You know we've agreed this!"
"Can I come home for the evening?"
"No."
Why should I feel guilty at wanting some time for myself?
Jane and I have discussed lots of this tonight. If Sam had been here we
wouldn't have been able to. We deserve some time for ourselves anyway.
Why do I feel so guilty about this?
Partly because some carers cannot get any respite. They care twenty four
hours a day.
.........
Last week I met a couple I know quite well. They are in their eighties. A
lovely unassuming couple. Their son cannot leave the house because of his
paranoia. They are worried he could commit suicide. He cannot be left alone
for the shortest of times. They would like a break. Just a few days. They
haven't been on holiday for years. But who could look after their son while
they were away? There were no ideas of any use. I wanted to say I would stay
over for the period - but I can't even cope here.
When they can no longer cope he will need to be looked after by an expensive
and inefficient care system. Some financial investment now to give them a
break will help them cope longer.
// posted by Mike @ 10:44 PM
Sunday, March 21, 2004
After a difficult day yesterday Sam stayed over.
Today seemed fine.
It was mother's day. I'd even managed to get Sam to buy a card yesterday and
write it. A beautiful bouquet of flowers arrived from Nell. My mum and dad
came for lunch and we had a lovely time. Sam played chess with my dad. He
played well and won. He knew he had played well.
In the afternoon he went to bed. His medication makes him tired but often he
will take to his bed to try to control the thoughts and troubles that are
busy in his head.
He came down in the evening for some supper. All was fine until just before
he was due to be taken back to the ward.
He told Jane he was not going to take his medication tonight. She tried to
reason with him to no avail. It seemed as if there was a voice telling him
not to take his medication.
She came to me and I tried. I reasoned and cajoled. Sam said he was well.
There was no reason for him to take his medication. It wasn't voices telling
him not to take it - it was his stomach that was telling him.
I came back to the trust thing again. He had to trust we were advising him
in his best interests. In the end he relented. He would take his medication
tonight as a sudden halt would be harmful to anyone taking such powerful
medication. He needed to discuss it with his doctor tomorrow. He agreed to
return and take his medication and we both got ready to go with him.
In the car as I was locking the house he became angry with Jane. He was
shouting and furious. He had so much anger he needed to release. Jane was
frightened. There have been just a couple of times when he has been violent.
He was talking of the spirit world. Didn't she realise that he could die at
any time? He had to send his soul to the spirit world for conditioning. He
calmed a little. I held his hand as we drove back. Shortly he said, "It's
okay, I'm better now," and removed his hand.
He was quiet.
As we got out of the car he said, "Remember the game we are playing is that
I've got schizophrenia. Don't mention the spirit world. - Okay?"
It was as if he wanted to keep those thoughts to himself. They weren't to be
shared with others. But it means that the ward staff are not really aware of
these thoughts that trouble him.
On the ward he took his medication and went to his room.
We came home and I poured a glass of wine. One too many.
I'd not been feeling well today - all week really. I'd managed tonight but
I'm worried about the continual effect of this on my and Jane's health.
// posted by Mike @ 11:07 PM
Saturday, March 20, 2004
I'm not sure where to start really.
We had a great night out last night. A concert locally. We met friends
there, a few glasses of wine and just an evening not thinking about Sam
Except five minutes before we were due to leave Sam phoned. Could he come
home tonight? No? Why not? Going out?
I'd already arranged that I would pick him up this afternoon. He was okay
about it there was no problem.
But last night was nice. I'd not been feeling well recently but meeting
friends and enjoying the music had perked me up.
Today an hour before I was due to pick up Sam he rang. I felt annoyed to be
reminded. I'm determined to be in charge of my own life. Otherwise I will
never get better.
Nell phoned. She'd sent Jane some flowers for Mother's Day but not to tell
her. She wanted the phone number of Sam's ward to tell him to get something.
I said not to worry, I'd be picking up Sam, I'd sort it.
The weather was too bad to go for a walk but Sam helped me with some tasks I
could not have managed without him. It was great to be able to offer sincere
thanks for his help.
He's been fairly quiet but when we have got into conversation it has been a
little disconcerting. When he was reminded of a friend a huge energy force
had emerged. At a visit to a drop in centre last week he had seen a ghost.
He talked of when he "went mad last week". He clearly recognises something
had gone wrong but when we try to discuss it the issue for him was that
"they" were trying to section him.
He had given up smoking yesterday. He sold his tobacco and with the
proceeds, went to the local pub and drank a couple of pints of beer. I don't
blame him. I would do the same but alcohol is not suiting him at the moment
- especially with the increase in dosage of his medication.
I said he could not drink at home but that became an issue. He decided he
was smoking again so we went out to buy some tobacco.
In all, the evening went okay but I was finding it hard. I've not been
feeling too strong the last couple of weeks. I found it hard being here with
Sam. I think it must be the constant change. I can't cope with the change
from him being really well to being really poorly to being in that
in-between stage again. He's clearly not well and I'm just worn out by the
effort of supporting him in this stage.
Jane took him back this evening.
The phone rang before her return.
Sam had burst into tears in the car. He started talking about an episode
when he was four. He had disappeared on a walk. Jane and her friend had been
distraught. Sam eventually reappeared getting out of a man's car who had
found him and returned him. It seemed strange at the time but Sam seemed
okay and unharmed.
He was suddenly now talking about it again. What had happened? Had he been
raped? Why had the man taken him away and returned him? Sam didn't know the
answers but was suddenly full of the questions.
He wanted to come home tonight.
The staff were great. Of course. No problem. He was given his medication and
Jane was given more for the morning.
I've made his bed.
He's playing cards with Jane now next door. He's calm and happy.
I remember him when he was a happy four year old running through the woods
with excitement and enthusiasm.
// posted by Mike @ 9:55 PM
Thursday, March 18, 2004
I've received a couple of emails that have compared the kind of care and
support that we have received with what pertains in their own countries.
One correspondent from the US paints the following picture:
"In the US we apparently do not have 'sectioning' like in Britain. Here the
only way to get treatment is to commit a crime and be jailed. Over 1/3 of
all people in prison here are on anti-psychotic drugs. Not necessarily the
right one. The prison mental health system is based on compliance, not
treatment."
This is very different from the situation described by a couple in Canada.
Their son who has schizophrenia is seen by the psychiatrist twice a week.
They (the carers) get to see the psychiatrist every two weeks "...which
gives him the opportunity to see our son from a different perspective and
also allows us to participate in a supporting role in a meaningful manner."
They also see another psychiatrist every two weeks to help them develop
coping strategies. They are kept fully up to date on new medications and
their side effects. "Without this support I have no idea how we would have
coped."
...........
I popped in to see Sam this afternoon. I thought he might need some tobacco.
Also it has been the last two Thursdays that problems have arisen.
Sam was dazed. He had been sleeping. He went into the cold outside in bare
feet to smoke a cigarette. He said little but kept looking at me strangely
with sidelong glances. I didn't stay long.
We should have had a meeting with Sam's nursing staff yesterday but the ward
manager was ill so it was postponed. As I was leaving today I bumped into
Sam's key nurse. He stopped to chat for a bit though there wasn't much to
report. He is very supportive.
// posted by Mike @ 5:33 PM
Monday, March 15, 2004
I hope this journal isn't too self-indulgent, just me whining on.
I'm sure you'll tell me if it is - or maybe you will just go elsewhere!
Whatever my worries and problems they are nothing compared to Sam's and
others who have serious mental health problems. A few people with such
problems have emailed me. Thank you for your messages - you know I have
replied.
By chance I came across this journal by a young man with schizophrenia. I
haven't had chance to look at it all properly yet but it seems a great site
with photographs and music.
I was very moved to read much of it, for instance:
"I want a friend and a hug and I haven't had either in a very long time. I
lay down face first on the floor but the carpet doesn't hug me back."
We try to give Sam hugs and love and to be his friend as well as his
parents, however difficult things get. Perhaps especially when everything
gets difficult.
// posted by Mike @ 6:26 PM
Sam came home yesterday for a few hours.
He said he had placed his hands on the head of another patient on the ward.
She had been worried and sad but Sam's actions made her happy again.
When we arrived home he asked me to sit down and he placed his hands on my
head. He was trying to relieve my stress, to make me happy using his special
powers. After a little while I moved away. I didn't want to be cooperating
with this.
"How do you feel now?"
"Fine. I'm fine."
http://mindriddles.blogspot.com
Back to Top
One Carer’s
Story - Barry Tebb
Schizophrenia -
A Carer’s Journal - Mike
Schizophrenia – A
Mother’s Story – Georgina Wakefield
My Journey Of Sadness –
Stan Hagon
The Voice Of Carers –
Amanda Cummin
Yemeni Carers’
Stories – Debjani Chaterjee
Beyond Our Reach, But Not
Our Love – Brian D’arcy
Carry On Caring – Emily Machin & Lucy Machin
Enigma And
Other Poems - Georgina Wakefield
Killingbeck Drive – Brenda Williams
Searching
The Beyond And Other Poems – Daisy Abey
Sharp Edge – Daisy Abey
The
Long Good Bye – Barry Tebb
Looking Back – Barry Tebb
Nameless In Camden – Brenda Williams
Autobiography – Simon Jenner
The
Sick Image Of My Father Fades – John Horder
Are You A Carer?
Caring About Carers
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