ANXIETY DISORDERS
The Caregiver
The following section is based on extracts from:
Nine, Ten , Do it Again: A Guide to Obsessive Compulsive Disorder
2nd edition, 1997. 91 pages
From the Cover: The author, Kathryn I'Anson is the Director of the Obsessive
Compulsive & Anxiety Disorders Foundations of Victoria (Australia) . The material has
been reproduced by kind permission of the author. The British and Australian term for
"support person" is "carer".
This is one of the most informative and easy to read books I have come across on OCD.
The author's style is such that you feel she is talking to you on a one to one basis
explaining OCD both from the feelings of the sufferer and from those of the caregiver.
Extract from the Chapter for the Family and other Support
People
Helping the Carer
If you are a spouse, sibling, mother, father, child or friend of a person who has OCD,
then it is quite possible that you have been suffering too. Carers of people with OCD have
to deal with many emotions that arise as a consequence of living with and caring for a
sufferer. You are likely to feel worried, frustrated and confused, and sometimes
despairing. These difficult feelings arise from the impact of the OCD on your relationship
and environment and because it is so hard to see someone close to you either battling or
in despair over thoughts and behaviours that seem to make to sense. Maybe insidious guilt
thoughts creep into your mind. "Is it my fault?", "What have I done
wrong?", Should I have loved and cared for him/her more?" Maybe you feel angry
and confused - simply can't understand how it is possible that this person, who seems
quite rations in all other respects, just can't stop these ridiculous behaviours. Have you
secretly wondered, "Is it attention seeking, laziness, naughtiness?'" On top of
all these conflicting feelings, there is the feeling of helplessness you just don't know
what to do.
The Following ideas and strategies may help:
Do not condemn yourself for having negative feelings. They are natural reactions to a
difficult and confusing illness. You cannot be expected to understand behaviours and
emotions which you have not experienced yourself - at least initially. You will develop
greater understanding if you spend time reading relevant material and listening to your
family member and other sufferers at support groups. However, negative feelings will
continue to arise - occasionally or often, and self-condemnation and guilt over these
feelings will only make them more difficult to let go. Accept your feelings, and actively
find a way of releasing them on a daily basis - for example, talk them through with a
friend, cry, go for a long walk or drive, do an activity such as gardening, painting or
craft which enables the creative expression of feeling.
Obtain support and care for yourself.
Maybe you have a great circle of family and friends who provide an empathic listening
ear and practical help when you need it. If not, you might consider joining your local OCD
Support Group where you will find some people to care for you, and you can talk to and
learn from other carers who have been in similar situations. If your own state of mental
and emotional health is suffering, it may be helpful for you to see a therapist. This will
be a positive act of affirmation that your health and needs are important, and will put
you in a better position to help the sufferer effectively.
Obtain and read information and books about OCD so that the disorder can put into a
proper perspective.
As you learn more, you will be able to make some new choices about your feeling and
reactions to the OCD. For example, you will learn that your family member's strange and
excessive behaviours are not caused by a lack of willpower, and that pleading, threatening
or cajoling them to stop will not help. You will learn to accept that the OCD impulsive
urge, anxiety and intrusive thoughts are the compelling force behind the repetitive
behaviours, the slowness, the constant questions or requests for reassurance. You will
also learn that you didn't cause it. You will recognize the important part you can play in
your family member's recovery and discover many ways that you can help. The recovery
journey will not e easy and you will still feel frustrated and despairing sometimes.
However, now you know why you are feeling this way, and that your feelings are a reaction
to the OCD, not the sufferer.
Take Some Time Our for Yourself
Every week - or every day if possible, spend some time doing something that you really
enjoy and where you cannot be interrupted. We all need some time to ourselves, and we all
need time to relax, have fun, and to pursue those goals that interest us. If you are able
to look after you own mental and emotional well-being, you will cope better with the
stresses that the OCD brings into you life.
Helping The Sufferer
If you have been living with a family member who has had severe OCD for along period of
time, it is likely that the disorder has caused significant disruption and distress to
your home life, relationships and social life. Possibly you have been involved in the
sufferer's rituals or avoidance behaviours, trying to ease her distress, or just to keep
the peace.
Avoidance Behaviours:
People with OCD avoid many situations or objects that trigger their compulsions. Your
involvement in avoidance behaviours may take many forms - for example, you may do all the
shopping because the sufferer's compulsions are triggered by contamination and decision
making fears involved with buying food, or you may always have to cook the meals, clean
the house, or answer the home telephone or the front door because of similar triggers of
compulsions and the sufferer becomes too distressed if pressed to to these things. There
are several things that you can do to help ease the daily stresses as is the sufferer in
their recovery.
Share your knowledge and new understanding of the disorder with the sufferer.
The isolation that four family member has been feeling has been an enormous burden, and
she has been feeling distressed and guilty about the affect of the disorder on you. Now,
hopefully, you will both be able to talk about the disorder, and express your feelings
about it, openly and honestly. This will be a great beginning to the healing process for
both of you, and any other family members of friends that are involved.
Encourage the sufferer to talk to you about her disorder.
This will help you to understand exactly how her obsessions and compulsions, have been
interwoven into the daily fabric of her life, an yours. This may be very difficult for as
it is often very embarrassing and to explain, so ask, but don't push and let her tell you
in her own time. When your family member does decide to confide in you, listen
attentively, encourage her to get it all out , and thank her for trusting you. Return this
trust by accepting what she tells you as an hones and accurate account of what she feels
and experiences. Ask questions, if you need to, to clarify what the anxiety or compulsion
or obsession in and when it occurs, but don't start trying to engage the sufferer in
discussion about the logic of her behaviours. The sufferer will immediately catch on to
the fact that you do not understand, and it may be a long time before she will confide in
you again.
Encourage the sufferer to to obtain professional help.
Your role here will be to provide support and encouragement, and if she agrees, to
offer some practical help in locating an experienced therapist. If the sufferer decided to
try behaviour therapy, and if you have been extensively involved in the rituals or
avoidance behaviours, it will be important that you join in the therapy at some stage. The
sufferer will need your help as she begins doing the work with exposure and response
prevention, and so you will need to know what to do, what not to do, and the best ways to
support her. If you and other members of the family are involved in the sufferer's rituals
or avoidance behaviours it is important that you begin to reduce your involvement and find
ways of normalising the family routines. Firstly, discuss this with the sufferer - don't
just abruptly stop your involvement as this may cause her a great deal of agonising
distress. Tell her that you want to reduce your part in the rituals or avoidance
behaviours to help her get better, and decide with her which ones you and other family
members will no longer participate in. Set some realistic goals together, and make sure
that the whole family agrees to abide by the plan. Once you begin to work cooperatively
together in this way, your situation will gradually change and the sufferer will no longer
take your involvement for granted. When the sufferer undertakes behaviour therapy or a
self-help programme, the work you have done together will give her a great head start.
Once therapy begins - whether pharmacotherapy" [medication] " or behaviour
therapy, your involvement in the suffer's rituals and avoidance behaviours should be
reduced to zero - if at all possible. The doctor or therapist will need to be informed if
y our involvement continues, so that they can work on this aspect with the sufferer.
Create a Supportive Home Environment:
The home is often the primary setting of compulsions, and is also generally the 'haven
of avoidance' for the anxiety sufferer. The less tension that in 'in the air' the better.
If there are significant conflicts in some the family relationships, it would be very
helpful to the sufferer if these conflicts are worked through and resolved - including
those conflicts that include the sufferer.
Ask your family member to tell you when she is having a particularly hard day.
Your family member's symptoms may flare up when her anxiety is high, she is depress, or
when she is stressed about something. Offer what support you can, and be flexible in terms
of what you are expecting from the sufferer on that day.
If you notice improvements, however small, acknowledge them, and encourage the sufferer
to reward themselves for the progress. Fro example cutting down a hand washing routine by
5 minutes, or reducing a checking ritual from 50 checks to 40 checks may seem
insignificant, but represents a great step forward by the sufferer. Your recognition and
praise will encourage her to keep trying.
Try to maintain a non-judgemental and accepting attitude toward the sufferer. A
non-judgemental attitude from you and all the family, to sufferer, and avoidance or
personal criticism, will enable the sufferer to focus her efforts at coping and getting
well, rather than expending her efforts i dealing with anger and resentment.
Laugher is good medicine.
When the sufferer is doing well, and having a good day, a bit of humour and laughter -
offered with sensitivity, is great balm to soothe away some of the painful feelings and
thought which arise.
Be patient.
None of the treatments or self-help programmes that are available for sufferers provide
quick 'cures' - or even immediate relief. Recovery is a slow and gradual process. Be
prepared to support the sufferer on a long-term recovery programme, and don't make
day-to-day comparisons. Recovery always includes slips and set-backs - the important thing
is that the set-back isn't interpreted as failure. The guilt and stress that will arise
from thoughts and feeling of failure could make the set-back much more difficult to
overcome, than if it is viewed as an opportunity to learn.
There can be no simple, straight-forward plan that will smooth away every rock on the
road to recovery. Every person who has OCD, and every family who has a sufferer as a
member, has a different set of symptoms and circumstances to deal with, different
relationships, different personalities and a whole complex array of different influences,
Try these ideas and strategies, and draw upon all the resources and support that you have.
Slowly, but surely, you and sufferer will discover the treatments and self-help strategies
and ideas that will work for you."
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