A Family Voice from Poland

Burden has many faces. It may come from fear, anxiety, shame and fear of relapse, or from worsening of the condition.

The biggest fear is that of relapse, and associated with this the fear that the person will stop taking their medicines. Because of this, parents become increasingly protective— who can blame them? They observe the behaviour of the person who is unwell, watching what he is doing and where he is going, to the point that they become exhausted monitoring everything about their relative. It is not that they are trying to control their relative, although it might seem so to others, it is that they want to allay any possibility of relapse or other type of crisis. For the person who is unwell, the parent’s behaviour may seem to be distrustful or suspicious and they may react negatively to it. Often parents stop thinking of their own interests, their own desires and become fixated on the unwell person.

If the person stays at home, isolated and inactive, the parent worries again, this time about how to encourage him to be active. The parents worry about too much or too little activity. They may search unstintingly for meaningful activities. In some cases parents provide work activities for their relative through friends. They may work packing groceries, stuffing envelopes, walking dogs, or mowing lawns. Sometimes they undertake more ambitious employment initiatives. All the time the burden remains, for even the responsibility of a job is seen as that of the parent who may have found the job in the first place.

Despite the known fact that people with schizophrenia are of normal intelligence, when it comes to money management, or insight into daily affairs, the illness robs them of their abilities. Parents may become involved in managing their money and advising them on expenditures, never giving them enough money to compromise their health in any way. If they are living away from the family home, it is very common for parents to pay the rent, help to buy the food, clean the flat and pick up the mail. Without this "overprotective" behaviour, eviction notices may arrive, cleanliness may be sacrificed, and the person may not eat properly.

The Family Association: Mental Health, in Krakow, Poland, like many family associations before it, carried out an inquiry connected to family burden. Most of the parents responding to the questionnaire had been caring for their relative for an average of seventeen years. The most burdensome things were helplessness, fear, the necessity of changing plans, dreams lost for their son or daughter. During an acute phase, families found the inability to communicate, and symptoms of aggression extremely difficult. A nagging question for all families was the unpredictability of the future, whether it would hold any possibilities for their loved one, and what would happen when parents could no longer care.

Having established what constituted burden, the Krakow group went on to consider what could be done to alleviate it. First of all the families should be provided with knowledge that would help them to understand the unwell person. Everyone needed hope to sustain them. A great deal of relief could be found by talking to others, the doctor, other family members and especially other families in the same position, and of finding “you are not alone”. (One family group in South Africa calls itself YANA.) In meeting together, families begin to recognize that life can go on and that you should not feel guilty about enjoying at least some of your life. It is good for families to learn that to give up all social activities and devote their entire life to the unwell person is not healthy or beneficial. Through family groups family carers get a more balanced view of their situation; accepting advice from other families who see their problems from a more rational perspective.

The Krakow group has been in existence for ten years and works out of the Occupational Therapy Workshops. Their main project is the social firm "Hotel" where 20 mentally disabled persons are employed. They also have a housing project, summer and winter camps, trips and help support a small shop which sells the crafts made by patients. They are active in public awareness and anti-stigma initiatives.

Information provided by Sofia Puchelak, President of Family Association: Mental Health, Krakow, Poland.