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 one’s 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 shouldn’t be put off for too long, obviously. Choosing the best time is difficult, and relies on knowing the person involved well.

Underlying Fears

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 children’s 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.

Practical Help

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 Huntington’s 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.

Family interactions

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.

Physical Environment

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.