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Some information for
carers
'If someone in your family
has schizophrenia, you need understanding, love and support from others.
No one causes schizophrenia, just as no one causes diabetes, cancer or
heart disease. You are not to blame - and you are not alone' (Expert Consensus
Treatment Guidelines for Schizophrenia).
Coming to terms with a diagnosis of schizophrenia
can be difficult for everyone, including close relatives and friends.
You may experience feelings of confusion, shock, guilt, fear, isolation
or even relief, and while these are all normal feelings, you should seek
help in coming to terms with them. One of the best things you can do for
yourself as a relative or friend of someone who has been diagnosed with
schizophrenia, is to learn as much as you can about the condition. The
information in this section will provide you with a solid basis from which
to start and we urge you to read through its contents. When you have some
more time, you can find out more by looking through our list of recommended
web sites, by joining a support group and talking to others who have had
similar experiences, by talking to a trusted health professional or by
phoning teh Fellowship's Helpline. By arming yourself with knowledge and
allying yourself with other carers and helping professionals, you are
providing yourself with the essential tools for living well with schizophrenia.
Some practicalities
It would be reassuring if the medication
used to treat schizophrenia removed all the distressing signs of the illness
but this unfortunately is not always the case, with some negative symptoms
usually remaining (although newer antipsychotics are more effective in
dealing with these) and in some circumstances, positive symptoms reappearing.
Following are some practicalities which others have found helpful in living
effectively with schizophrenia.
Providing structure
A structured environment means providing familiar and manageable routines
and expectations. As a family, agree on house-rules and acceptable behaviour,
and decide on what actions are to be taken should those rules be broken.
Make sure you follow through with these agreements. Being consistent in
your attitudes and behaviour will enforce your family structure.
Helping with motivation
It is a good idea to encourage your relative to participate in activities
wherever possible but try to keep these activities familiar in the beginning.
Gradually introduce more stimulation through newer routines, people and
activities as too fast a re-introduction may seem disturbing or even threatening.
Where possible, start where the person shows any interest in an activity,
and where they might become involved with encouragement.
Keeping it simple
Schizophrenia can affect people's ability to make decisions: people may
change their minds frequently or they may take what seems to you to be
a long time in coming to simple decisions. While this may seem to be an
act of stubbornness or a deliberate attempt to irritate others, it's important
to remember that a mental illness can impair the decision-making functions
of the brain, and that someone who is affected is likely to have genuine
difficulty with what seems so easy to others. It may be tempting to make
the decision for the person but try not to do so. Being patient and letting
the person make up their own mind (in their own time) will help to develop
confidence and independence.
Maintaining information and sticking
with treatments
Help your relative to keep a record of information on what symptoms have
appeared, what medications are taken (including dosages) and the effects
of various types of treatments. It's also useful to keep a note about
your relative's future health appointments, so that you can remind them
when the time comes. Medication is almost always necessary in the treatment
of schizophrenia but taking medication can often become problematic for
people and this can escalate into a serious problem if left unattended.
People stop taking their medication for a number of reasons, some of which
include: a lack of insight about the illness, unwanted side effects, forgetfulness
or a feeling of being well again. Below are some suggestions which may
help you to keep your relative on track with medication3:
- Talk to the doctor about changing either
the dosage or the type of the medication to reduce unwanted side-effects.
- Explain to your relative that they are
feeling well again precisely because they have been taking their medication.
Remind them that once the medication stops taking effect (usually a
couple of weeks after cessation), the symptoms are likely to return
and this could mean future hospitalisation.
- Make tablet taking in the family a ritual.
If one or more of you take medication (even vitamin pills), it can sometimes
help to have everyone take their tablets at the same time. This will
help not only with forgetfulness but will also help to 'normalise' the
experience.
- Buy a weekly pill box, which can be helpful
for people who simply forget to take their medication.
- Discuss the option of injectable medications
with your relative and with the treating specialist. These 'depot' injections
are usually given fortnightly and because they are administered intravenously,
you can be sure that your relative is getting it (they can't spit it
out, hide it under the tongue etc.).
- Never sneak pills into a person's food.
If paranoia exists, this will only increase it and eliminate any existing
trust between you.
Dealing with persistent symptoms
Many people who have long-term schizophrenia are left with what are called
'residual' symptoms. Many of these residual symptoms centre around distrust
and bizarre thinking and the best way of dealing with these symptoms is
to 'reality-base' the person who is experiencing them. The term 'reality-base'
means bringing the person back to the here and now by telling them the
reality of the situation as you see it.
An example: "I don't need medication
because I am now well".
A response: "Yes, I agree you are much better now but that is due
to the effects of medication. If you don't continue to take it, you may
become ill and end up in hospital again".
The statements should always be simple and
direct. When you have reality-based someone, move on to the next point
of conversation. Never agree with bizarre thinking as this only reinforces
the truth in their mind. Never argue about a piece of bizarre thinking,
just reality-base the person in a firm but calm manner.
Persistent hallucinations are distressing.
If the optimal use of medication has been assessed, there are still other
ways of minimising the disruptive effect of hallucinations. It is a matter
of learning to focus the attention on something else, such as TV, radio
or an interesting activity. Some people use headphones to block out the
hallucinations, while others plan their week so that they have to concentrate
on some occupational activity or rehabilitation program. Physical exercise
is another avenue to explore. There are many other ways of tackling this
problem (discussed elsewhere in this guide) so discuss the subject with
health workers and with carers in your local support group.
Learn the warning signs of suicide
Tragically, people who have schizophrenia are in a high-risk bracket for
suicide. One in every ten people will complete suicide and so any threats
of suicide should always be taken very seriously. Below is a list of how
people often show their suicidal feelings:
- Being withdrawn or unable to relate to
people around them.
- Having definite ideas of how to kill
themselves, and maybe speaking of tidying up affairs or giving other
indications of planning suicide.
- Talking about feeling isolated and lonely.
- Expressing feelings of failure, uselessness,
hopelessness or loss of self-esteem.
- Constantly dwelling on problems for which
there seem to be no solutions.
- Hearing voices which may be instructing
them to do something dangerous.
Seek help from your relative's doctor and
other family members and friends. Call 999 or a hospital emergency room
if the situation becomes desperate. Always stress to your relative that
their life is important to you and to others and that his or her suicide
would be a tremendous loss and burden to you, not a relief. If suicide
is attempted, phone someone to come and be with you and get in contact
with your local support group and let them know what has happened.
Handling a crisis
In some cases, behaviour caused by schizophrenia can be bizarre and threatening.
If you are confronted with such behaviour, do your best to stay calm and
non-judgemental, be concise and direct in whatever you say, clarify the
reality of the situation and be clear about the limits of acceptable behaviour.
Seldom, if ever, will a person suddenly lose total control of their thoughts,
feelings and behaviour. Family members or close friends will become aware
of a variety of behaviour which gives rise to mounting concern: sleeplessness,
ritualistic preoccupation with certain activities, being suspicious and
unpredictable outbursts are all common early warning signs. During these
early stages, a full-blown crisis can sometimes be averted. Often the
person has ceased taking their medication. If you suspect this, try to
encourage a visit to your healthcare provider. If this is not successful
(and the more psychotic the person the less likely it is to be so), you
should contact your provider by phone in order to get advice. You must
also learn to trust your intuitive feelings. If you are truly frightened,
the situation calls for immediate action - call the police on 000.
It may help you to know that the person
is probably terrified by his/her own feelings of loss of control. Further,
the 'voices' may be giving life-threatening commands. In the person's
mind, messages may be coming from light fixtures, the room may be filled
with poisonous fumes or snakes may be crawling on the window. Accept the
fact that the person is in an 'altered reality state'. In extreme situations,
the person may 'act out' the hallucinations, for example shatter the window
to destroy the snakes. It is imperative that you try to remain calm. It
is also imperative that your relative get medical treatment. While waiting
for medical help to arrive (or before attempting to take your relative
to hospital), the following suggestions may prove helpful:
- Remember that you cannot reason with
acute psychosis.
- Do not express irritation or anger.
- Don't threaten or shout.
- Don't criticise - it will only make
matters worse.
- Don't bait your relative into acting
out wild threats - the consequences could be tragic.
- Don't stand over your relative if they
are seated. Instead, seat yourself.
- Avoid direct, continuous eye contact
or touching.
- Comply with requests that are neither
endangering nor beyond reasons. This provides the person with an opportunity
to feel somewhat in control.
- Don't block the doorway, however do
try and keep yourself between your relative and an exit.
- Decrease other distractions immediately
- turn off the television and radio.
- Express understanding for what your
relative is experiencing.
- Speak quietly, firmly and simply.
It is obviously far better, if possible,
to have your relative go to the hospital voluntarily. If you do not think
your relative will listen to you, see if a friend can talk the person
into doing so. Some have found that presenting their relative with a choice
seemed to work. "Will you go to the hospital with me, or would you
prefer that John take you?" Such an approach may serve to reduce
the person's feeling of helplessness. Offering choice, no matter how small,
provides some sense of being in control of the horrible situation in which
they find themselves.
However, should the psychotic episode involve
violence, there may be no time for all the above strategies and more drastic
measures need to be taken to protect both you and your relative from harm.
Don't be hesitant to call the guards. Tell them that your relative has
schizophrenia, explain what it is that your relative is doing and that
you need the help of the police to obtain medical treatment and to control
the violent behaviour. If you are alone, contact someone to come and stay
with you until the police arrive. The doctor who has been involved with
the care of your relative should be advised of the situation as soon as
possible.
Emergency Planning
It is always a good idea to try as far as possible to plan for any crisis
which may arise due to your relative's condition. Some points to adopt
in your normal routine are listed in the table below:
- Keep a list of phone numbers for the
police, your healthcare providers and the emergency department of your
local hospital handy so that they are quickly accessible.
- Find out ahead of time which hospital
to go to in case of an emergency.
- Know which family members and friends
your relative may trust more than others in an emergency.
- Find out whom you can phone for support
at any time of the day or night.
- If applicable, decide who will take
care of other children.
- Consider explaining the situation ahead
of time to your local garda station to get advice about what to do.
- Know that the crisis situation may be
less frightening to your relative if the emergency procedure has been
explained and is anticipated.
A last word
Remember that schizophrenia affects everyone differently: both individuals
and families. What we have presented here are only a few tips to help
you through the initial, confusing stages. It is really important to keep
your knowledge up to date: attend your local support group regularly,
join a family support course or call us on our national helpline. Most
importantly, remember that schizophrenia does not have to be a life-sentence
- people can and do recover. But also remember that you too need love
and support. Look after yourself and everything else will follow.
Acknowledgement
The Schizophrenia Fellowship would like
to thank Schizophrenia Ireland for permission to reproduce this section
of their information kit.
References
1. SANE Australia (1998) Carers Handbook:
Caring for someone who has a psychiatric disability, Melbourne
2. ibid.
3. ibid.
4. Schizophrenia Society of Canada: Learning
About Schizophrenia: Rays of Hope
5. SFNSW (1999) Schizophrenia: Information
Guide, Sydney
6. World Schizophrenia Fellowship (1992)
Schizophrenia: Dealing with a Crisis, Pamphlet 15
7. Schizophrenia Society of Canada, op.cit.
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