Coping with Behavioural Disturbances
by Pete Ellis
in Huntingtons Disease
Department of Psychological Medicine
Wellington School of Medicine
A presentation delivered to the Wellington Conference 1997
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Coping at Different Stages
So, how do people cope at different stages?
At the time of initial diagnosis, there is often a
period of denial. Those who have been through the predictive testing programme will be
familiar with this as the period in the morning of waking up and questioning whether the
result was only a bad dream, but others will recall family members who had clear signs of
disease but adamantly insisted that they did not need to see a doctor. In some way, not
being told that they had now developed the disease allowed them to continue to cling to
the hope that their symptoms were not of any significance.
The other phase of the response to grief are now
familiar to many people through the work of Elizabeth Kubler Ross. The anger at fate, the
"what if" and "if only" questioning of ones own and others past
behaviour, and the depression. The only point I would like to stress is that while denial
is usually the first stage, the other stages occur in any order and recur over a period of
time until the person reaches some acceptance of the situation. However, if things
deteriorate, confronting the person again forcefully with the effects of their illness,
there can be a further period of grief and adjustment. For example, one can become used to
early symptoms of te disease and adjust to these, but having to give up work may provoke
considerable distress and further grief.
There is a need for diagnosis, as the start of
working through the implications for the sufferer and the family, but there is also a need
for timeliness in this. Early symptoms evolve slowly, and insistence by family on
immediately seeking confirmation of the diagnosis may not be welcomed - although it
shouldnt be put off for too long, obviously. Choosing the best time is difficult,
and relies on knowing the person involved well.
The person facing probable diagnosis of HD is
likely to be confronting various fears, including abandonment by family and friends, the
fear of losing their job in the near future if their employer is unsympathetic, angry and
frustrated at the loss of what they had hoped for in the future and facing grieving for
their childrens risk of the same condition, and perhaps not being able to see them
grow up as they had planned.
Of course, the spouse and the family will be facing their own fears around similar issues.
So, what is available to help? This slide
outlines some key issues in the area of practical support. These are essential resources
for people and can ease some of te worries about the condition. However, it is important
to acknowledge that acceptance of these forms of help can be difficult. It means that one
is giving up some independence, and accepting that the illness is indeed advancing. This
can increase fears of further incapacity, and concerns about how these will be faced.
There is also the issue of accepting others into the privacy of your own home, doing tasks
that you considered to be yours, often to a standard less than you expected yourself.
I would also like to mention stigma. I have just
been at the College of Psychiatrists meeting in Christchurch which is running back to back
with the Schizophrenia Fellowship meeting. It is interesting to reflect on how well the
Huntingtons Association has been able to put over a sympathetic view towards HD in a
range of media, and begin to change public opinion and acceptance.
The families and sufferers of those with HD
face challenges in responding to changing feelings and capabilities of those affected. It
is important to remember that these feeling may fluctuate from day to day and hour to hour
in unpredictable ways. Over time it is necessary to repeatedly restructure expectations of
the affected person, and accept increasing limitations of what they can do. The disease
tends to lead to the affected person becoming more self centred and dogmatic, and there is
a need to accommodate this as far as possible. If you can, avoid confrontations if they
are over minor issues. Sometimes it is possible to put things in a different way, to get
around some of these difficulties. For example, rather than saying: "You have to eat
lunch now!" it might be possible to put this as "Would you like to have lunch in
the kitchen or the dining room?"
People with advancing HD tend to become
attached to regular routines and to become anxious when these are altered. It is useful to
keep to a schedule of regular meals, exercise and social contact. Social contact can be difficult to maintain and tend
to come to rely on family and particularly good friends. It can be helpful to set up a
regular weekly schedule of visits rather than unexpected dropping in when possible, and to
cherish the friends who do maintain this contact. Inevitably there will be extra events,
such as clinic visits or distant relatives visiting. These need warning for the person,
but it is generally suggested that this should be only a day or two ahead so that the
person does not become too anxious about the event.
Looking after the physical environment is
also important, particularly to ensure safety and to prevent falls. Sometimes the person with HD will accept some
necessary limitation on their activity, such as giving you driving, or giving u p cooking,
more readily from the doctor than from family.