Living with uncertainty

'Experts' talk about the ' literal ' quality in the responses of people with schizophrenia. This is better described as a response limited to the immediate context. The background to any exchange has to be assembled, is only loosely held on to, and all the associations that make it up for understanding are not always there or are only loosely attached
Take crossword puzzle solving. Often an answer not immediately found, then left, comes up promptly much later after doing other things. The context has been going on silently.
This ability - to bear in mind and hold onto it in the background - is weakened in schizophrenia; the wrong associations butt in and take over, before being able to be set aside.
Help out by building an updating recall, and quiet reminders
giving both time and space - letting the listener 'play themselves in' , and give preparation if the point changes.
Don't flit about. Don't criticise directly, or rebuke ... in tension, find distance. If frightened find distance, and companion.

The sufferer does not welcome switching nor interruption before they have finished making their point.
Stick to the point.

Prepare for change that you want, by prefacing it and waiting.

Essentially both time and place should be given and quiet and context prompting, born in mind all along
the conversational or activity exchange, in case the context has receded - as is said " they are not all there " .. they may not be ...with it ... at any one time.

---

Carers have 'presence' in the front line, but little authoritry; professionals have authority, but little presence at the frontline where sufferer is

Carers need to be comfortable with caring when a family member has residual illness., and is dependent upon the care provided by the family.
Carers need security and control. if they are doing the caring at front-line.

Changing routines, changing professinal 'orders' can be frustrating and exasperating, especially when prsented in a way that seems to be both inconsiderate and authoritarian.

As a carer I had a phone call from a nurse who said that X had punched him.
The nurse then said that it was his own fault and apologised for the incident.
Later X told me that instructions from another member of staff to attend the dentist had beenr reversed by the second nurse.
I think that people with schizophrenia do not like touch, especially when in a severe "session" of the illness. It as though physical contact hurts. [ passivity - things get in with force before any alleviation in the context ]

---

Professionals and well meaning advisors should prepare the listening patient, reflect before intervening, and, where possible,
consult about any change with carer, ahead of speaking about that with sufferer, and better wait rather than press ahead without speaking to family carer.

The sufferer depends upon the carer's ability to continue caring.
Without the professional advice backing carer with their authority - by explaining to carer what the professional has told sufferer has been advised for 'recovery',
and if not recognising that the last word is with them - the carer - then the carer relationship with the dependent sufferer is not helped. [ E.G Helpfully, consultant advice might be that to stay better, sufferer is to engage with something outside the home
on at least three days in the week - as TREATMENT - that direct advice - not asking but telling - not saying it's your choice - enables the carer to back their own caring authority up, by reminding sufferer that this is what the experienced professional prescription
was/is saying was necessary for recovery , and therefore what the family caring situation, and the after-care service delivery, has to achieve.
[ not underminding it by dealing exclusively with family sufferer - 'confidentiality' 'building trust' ..' it's the choice of the sufferer' etc ] .
It is not the choice of the sufferer.
Sufferer is a dependent.
What they can do, depends upon and follows sustaining and protecting the position of the caring carer, and fitting in with their support system; their other obligations

Advocating change in the care situation means recognising and dealing
within the limits of the carer position first - BEFORE raisng the matter with the dependent sufferer.

In dependency, professional and sufferer cannot decide on anything between them, and the professional should not assume a decision can be come to; a decision should not go that far.
It should not be entered into, or considered as a reality, until the consequences for the carer in their care situation, are raised and agreed with the carer.

Why do we shout at them and dos it matter Schizophrenia: How Should One Behave? ... [ I have taken this from Healthy Place .com I would like to acknowledge that - it is very much admired by me and represents my experience also [ interpolations by me are within brackets and are not in italics ]

My advice: remove the anxiety, first; start in tactfully and maybe with a subject the S. is acquainted with - the family will know about this - and experienced in it, maybe more so than you - but not at a level where you make a fool of yourself - " cool " !!!!

It may seem odd that one has to ask...
,"How should one behave towards a person with schizophrenia or allied disorder?" ..
However, most people do not understand what it is that makes it difficult for people with the disorder to communicate.
The general public feels embarrassed and sometimes frightened to hold a conversation with a person who has a mental illness.

... [ Sufferers with this condition find it difficult to hold on to the direction as to 'what went before' and putting that with what is to come. Holding on to that is difficult.

.... see ... paragraph 5 ideas

When certainty about the future is loosened off 'inside' the mental functions, anxiety will build ...
particularly for those personalities who were introvert - somewhat obsessional before illness
- the ones who will have negative schizophrenia - a routine - and if not present, then a ritual - a habit is used, and 'clung to', making change to a new routine difficult to make acceptable .

A routine that lies ahead is more definite, and is more 'outward' connecting.
There is a lot of disuse of 'neuronal activity' in schizophrenia that might be repaired.
The neurons are not lost - just the connections are loosened and do not come into the picture
- they need using, to link them up again.
Taking part in a conversation which is a 'to and fro exchange' makes for difficulty in obtaining and holding on, to the referential background
to what is going on with the conversational exchange.
Sufferers will often seem to ignore what the other is saying,
but return to what they themselves were and are saying - pursuing their own thread - they are either on ? 'surer ground' for their inner associations,
or are not taking in the context which the other is following
i.e. the 'other' has a context and a direction which their inner minds will follow - but the sufferer does not continue to catch up with the context - maybe does not become aware - maybe cannot match it from their curent 'thought store'
it can be a boring and a tiring exchange - for both are at a loss - more difficult and less correctable by the sufferer.
It can lend some seeming urgency, a kind of bullying - in what sufferer wants, and wants to say
- they need to be sure it has been and will be attended to,
not at the pace and priority the listener sees as comfortable, but accepted now - perhaps so that it can drop out of the holding position.
in sufferer's mind it doesn't need to be a worry any more, can be let go for other things. in sufferer's mind ?
It can be exasperating and irritating - to give up your 'control' of the flow.- recognise it is all too much for the moment, better to back off, let time go by, allow 'distancing' from what is temporarily an anxious situation ]

---

This pamphlet tries to give some pointers as to how to behave and is for families and for the general public.

Speak Slowly & Clearly[ and build in 'cues' ]

We have learned that we need to speak slowly and clearly to persons with schizophrenia - to make the sentences short so that they are not too complicated and to wait to make sure that what we are saying is reaching the person.

see paragraph 5 Why is this technique useful?

A person with schizophrenia explains:
"My concentration often floats in and out so that I only hear part of a sentence. Maybe I will miss two or three words. This will make it very difficult for me to understand.
Recently I went on a family outing. There were other families there and I could hear everything that everyone was saying to everyone else. The sound and all the people moving about came in on me so much I began to get quite frightened.
I was agitated and irritated at the same time. I felt I wanted to defend myself in some way. My dad took me to a quiet place where we sat and had a cup of tea.
We didn't talk about it. We just sat and drank our tea and I began to feel less threatened."

Sometimes they do not want to talk and cough or grunt or turn their head away when noi=ot ready - better often to wait - listening - and let them speak first. Responding continuously is more difficult than starting with the subject they want to introduce . 'They ? Provide Structure & Instructions

People with schizophrenia need structure in their lives. Routines that are comforting and predictable. They are useful to someone whose medical condition often makes life very unpredictable.
Routines provide anchoring external references onto which the sufferer can project and attach their internal thoughts, which are often otherwise 'at a loose end', and unconnected, and then can be taken into misbeliefs or nothingness. [ Routine provides for anchor points coming up ahead. ]
It is useful to help them set up a schedule and a few tasks to accomplish at certain times of the day or week.

[ An external framework with a schedule such as two or three sessions in the week on an interest activity, or an educational programme, or a sheltered work of suitable grade, gives sufferer a forward looking engagement, that the brain can point its memory to, and prepare for, by 'priming' ; and assembling those appropriate network connections that will be useful at the time of participation ahead.
Practice within these sheltered and graded outside activities, exercises reconnecting to the social requirements within the activities.
Especially if you can revive an interest , experience, and skill already there, with an outside activity.
The regular preparation for the week ahead schedules re-establishes a holding onto something coming up. It rebuilds an internal matching framework . Something upon which the brain can get itself primed co-ordinated, in advance. Think of attempting a crossword clue - searching for the answer, failing, setting that aside to do something else, returning to the clue much later - the answer often comes straightaway ; something has been holding the problem and working on it in the background - priming.
The activities, matched to the experience and interests of the sufferer, also provide 'breaks in caring' , giving carer a time to themselves. a predictable time to themselves. High emotion hanging around which affects the illness badly, has time and space to dissipate away. ]
Professional commissioners and providers should see the provision of an external framework of activities as aftercare TREATMENT

It's absence to be registered as a NEED UNMET in the Needs Assessment stage of the Care programme Approach, and at the regular Review stage, something still to be provided. This registration gives management a failure of service - to be remedied.

Is it possible to achieve this? Some people with schizophrenia are very disabled or become so from time to time.
It is not always possible for them to follow a schedule, although it is beneficial to try to maintain a definite routine. However, when your relative, client or friend attempts a task but isn't able to complete it or does it wrong it is not at all helpful to say things like: "Can't you get anything right?" or "Let me do it!" even when you are very frustrated.
Break tasks into simple components to create the possibility of success and to encourage the feeling of being useful. Give only one instruction at a time.

Maintain Equilibrium

Sometimes you may feel you are walking on broken glass when your relative or someone you know is having a particularly difficult time. At that time you have to summon up all your energy so that you can maintain their trust while at the same time maintaining equilibrium at home.

Here are some ideas towards that goal:-

· Be friendly
· Be accepting
· Be encouraging
· Make time to listen
· Include them
· Treat them with respect

These behaviours should also be adopted by the general public.

Avoid the following:

· Being patronizing
· Being critical
· Pushing them into situations they are not comfortable with
· Being gloomy
· Arguing with them, or with others while they are present
· Giving them a lecture or talking too much
· Getting yourself into difficult situations with them

When a Crisis Comes

Sooner or later when a person has schizophrenia a crisis will occur. When this happens there are some things you can do to reduce or avoid the potential for disaster. Here are a few pointers:-

· Remember that you cannot reason with acute psychosis
· Remember that the person may be terrified by his/her own feelings of loss of control
· Do not express irritation or anger
· Do not shout
· Do not use sarcasm as a weapon
· Decrease distractions - turn off TV, radio, dishwasher, etc.
· Ask any casual visitors to leave - the fewer people the better
· Avoid direct continuous eye contact
· Avoid touching the person
· Sit down and ask the person to sit down also

Changes in Circumstances

Often, a relative or friend will move or change his circumstances in some way without informing anyone.
Social workers and other mental illness professionals are inclined to tell parents, "Let him take responsibility for doing this," or "It will be a learning experience for her."
This type of advice indicates to us that many people in the helping professions do not understand the nature of schizophrenia. Our advice differs.
We know from experience that many persons with schizophrenia are often unable to take responsibility for informing others about such matters.
If we leave them to do so we are likely to end up dealing with the much more complicated mess
that will have to be sorted out when the consequences of this lack of action come about.
A pension or social assistance cheque fails to arrive and the person is cut off from benefits.
Bank communications, bills, etc., are not received and not paid.
Rent is neglected and the person is evicted.
Possessions are left behind. Premises are left uncleaned.
Our advice is look after these matters as a matter of course, if you suspect your friend/ relative won't.

Offer Choices

People like to feel that they are in control of their lives.
Sometimes it is difficult to persuade someone with schizophrenia to do what is best for them.
Thus it is useful to offer a choice. "Will you take a walk now or after lunch",
might be a way to suggest a walk, a shower, or any activity that you may feel useful or enjoyable. People with schizophrenia often have feelings that change very frequently,
so that what someone may refuse at this moment he or she may agree to do later in the day or week.

Going to the Doctor

A person with schizophrenia gives their perspective: -

"A lot of people of my acquaintance complain that all psychiatrists are good for is prescribing pills or giving injections - and perhaps that's true.
Some people seem to want to go to the psychiatrist and get some real counselling.
They would like to talk about their housing and they would like
to talk about what the psychiatrist can do to help them get back to work,
or at least what would be their strengths if they tried.
I don't know whether anyone has a psychiatrist who will help like this.
Usually it's, 'See the social worker'. But one of the men I see when I go for my appointment
says the social worker is never in when he comes for his appointment.
The trouble with me is that I have such high anxiety just walking in the out-patient door
that by the time the doctor says 'Come in,' all I want to do is get out of there!
So it's a case of him saying 'How have you been?' and me saying, 'Fine,' and then responding that way to every question he asks me.
He's trying to help but I'm about to explode. So I guess all my psychiatrist is good for is prescribing pills."

Holiday Time

"I dread holiday times when families are all supposed to get together, eat and drink and generally enjoy each others' company.
For me, times like these bring back feelings of disappointment, resentment, sadness and a whole host of other emotions.
Christmas, for example, has not been a good time for me or the family for many years.
There were times my brother was in hospital, times he was home but barely stable,
times he had to be taken to hospital during the holiday, times the police came.
If I dread it, what does it mean to him? When he thinks a lot is expected of him,
he usually handles it well for a few hours, but after that he 'crashes'
- I mean he retreats to his inner self, or he gets extremely agitated.
Last year, each visiting family member took my brother aside for a mini-visit,
a one-on-one chat and that seemed to work a little. At least he knew everyone cared.
But when it came to the big dinner he disappeared to his room.
He just cannot process a lot of noise, people, snatches of conversation - it's just too much for him."

Final Thoughts

Do you help frail, old ladies across the street? Use some of that attitude in rethinking your treatment and interaction
with a person who suffers from schizophrenia who may live near you.
This doesn't mean that you need to be overly friendly, but don't ignore them.
Engage them in conversation, but don't be intrusive.
People with schizophrenia, like a physically frail person, cannot defend themselves as well as a person in full possession of physical and mental powers.

Some people are on heavy doses of medication that may slur their speech or make them react slowly. (Quite often this is mistaken for drunkenness.)
Take into account that sometimes the person may be anxious and may withdraw.
Let people withdraw, but leave the door open.
Maybe ask them to visit you when they feel they are able.
Offer a cake or a plant or some other friendly gesture.
Send or drop off a postcard or greeting card with a brief, friendly message every so often.

back to home page

	.