Janine Berg-Peer - Newsletter

Caregivers in Germany – The Challenges

ICons-scarf! - International Conference on Schizophrenia,

Chennai, India, 17.10.2008 – 19.10.08

Janine Berg-Peer – Berlin, Germany                                                      

 

First of all I would like to thank Dr. Thara and her team for her invitation to this most interesting conference. IN my talk I will concentrate on how schizophrenia or other mental illnesses affect the life and the personality of caregivers. And I hope I can convince those of you who still treat patients that it is important for the recovery process to integrate and consider caregivers.

 

The situation for caregivers has been always very hard in Germany, probably like in most countries. But it is getting worse. Why:

 

1.       The number of mentally ill persons in Germany is increasing and the financial resources are decreasing,

2.       Financial and social help for consumers is organised in a very bureaucratic way,

3.       Lacking support of psychiatrists and psychotherapists.

 

I turn to my first point: The number of mentally ill persons is increasing, as in a number of countries. The increase is most dramatic with young people, in bigger city and especially in Berlin.

 

1.      First point:

Basic health care in Germany may be better than in other countries, but it has never been sufficient: The estimated 5.000 psychiatrists in Germany are not able to take care of all those who need care. Especially in the country side the situation is very difficult. The situation in Berlin is better than in most other regions.

 

Financial cuts with the health insurance system has led to reducing the number of days a patient used to stay in hospital and to reduced funding for psychiatrists (as well as other doctors), which results in less time for mentally ill patients and the prescription of medicaments according to price.

 

2. Point:

Financial and social help for consumers is organised in a very bureaucratic way. There is help in Germany for consumers – especially in Berlin, but you have to be a very experienced consumer or caregiver in order to know where to get the help you are entitled to. From our experience in counselling caregivers we know that it takes a long time until consumers get the help, they should get – if ever. As you can imagine, these bureaucratic procedures are even more difficult to overcome for consumers.

 

3. Point:

Lacking support and cooperation from psychiatrists and therapists (I guess, it is not the first time, you hear this!) There is widespread scientific literature about the importance of cooperation between psychiatrists, consumers and caregivers in the recovery process. In practice, however, this cooperation rarely takes place. Although we have to carry a large responsibility for our mentally ill relatives, we rarely find psychiatrists, who inform us about adequately about the illness, who help us with an adequate attitude towards our children or partners.

 

The reasons – so we are told – pertain to “patient confidentiality”, the importance not to endanger the trust between therapist and consumer and – last but not least – the lacking time which means money. All these reasons have their own validity, but there are positive examples of support and cooperation and the results concerning the recovery are very encouraging.

 

Whereas psychiatrists and therapists don’t have time to tell us, what to do, they do have time, to tell us, what is wrong: Our relationship to our mentally ill family member is too close, there is too little distance, we do not trust them to take care for themselves. Very often this is true. But a better cooperation between psychiatrists and caregivers could help us to find the adequate balance between caring for our children and trusting them to manage their lives despite the illness.

 

How does this affect the situation of caregivers?

 

The burden for caregivers has always been very high. First of all, it is a terrifying experience being told, that your child suffers from schizophrenia. And sometimes it is a terrifying experience to live with a person suffering from schizophrenia.

 

About 60% of consumers live either briefly or permanently with their parents. In most cases the caregivers have to take care of bureaucratic tasks, provide food and medical help.  In addition, they carry most of the expenses. Often consumers refuse to accept medical help (because they are not sick!), which makes the situation even worse for the user as well as the caregiver. Often they do not want (because they are not sick!) or they cannot take the necessary bureaucratic steps to get financial or housing assistance. If they accept help, we can do this task for them, but if they don’t, this means they cannot get money or other forms of assistance which would then free us from additional expenditures and burdens. In a number of cases caregivers are faced with the choice: Either I keep “managing” my child or spouse, or I stop “managing” and accept, that he or she could become a homeless person.

 

As a result, a large number of caregivers suffer themselves from physical or psychological illnesses and other serious problems:

·         Heart related disorders, chronic pain, insomnia and depression.

·         Another problem are financial losses: Many caregivers have to accept early retirement, which leads to a lower retirement income. Frequently the inability of many consumers to deal with money, leads to a situation, in which the caregivers have to take over the debts.

·         Another burden results from social isolation: Many separations occur in marriages with a mentally ill family member and it is the women who stay with the mentally ill. Friends and relatives grow more distant, possibly because they do not know how to deal with the illness. Some of you stated, that a enlarged family system helps mentally ill persons, but the reality is, that many caregivers in Germany live very isolated.

 

The increase in mental illnesses and the shortage of money in the health system will lead to an increase in burden for caregivers: Why:

If patients stay for a shorter time in hospital due to budget constraints, this means that caregivers have to take care of the patient, whether his or her health has improved or not. And since it may take months until consumers have found an day clinic, an adequate living arrangements or an appropriate therapy, our mentally ill relatives stay with us for a very long time without treatment and nothing to do. The caregivers amongst you know what I am talking about.

 

The Caregivers Association in Germany

The enormous burden of caregivers has led to the foundation of the first caregivers groups in 1975 and the foundation of the association in 1992. Today we find a growing number of institutional and individual members in Germany. In Berlin we have about 300 members which is very little in a big city like Berlin. Our objectives are as follows:

 

1         Mutual support of caregivers

2         Influence on politics, administration and the health system

3         Destigmatization of mental illnesses

 

We can be proud about what we have achieved, however, it is still not enough: We offer individual and group coaching for caregivers and organize lectures with professional. We have gained some influence with important decisions in politics, social organizations and the health system, as well on the federal level as well as in Berlin. However, it is a daily struggle, because there is a strong tendency to forget us. There is some success in reducing the stigma and the prejudice about mental illnesses, especially in the case of depression. This is still much more difficult in the case of schizophrenia, where we still have to fight against the widespread assumption that schizophrenia leads to violence and criminal acts.

 

We started a number of projects in order to help consumers as well as caregivers:

 

1.       We organize jobs for consumers,

2.       We educate caregivers as family helpers (assistants) who can support families which are extremely burdened

3.       We plan to work with the police, fire fighters and judges and give them information about the illnesses and about the situation of caregivers,

4.       We cooperate in projects which educate consumers as counsellors for other consumers.

 

Two factors for the association are particularly pressing: We do not have enough members, especially not enough young members and our financial resources are very limited. Maybe we will in the long run profit from the difficult economic situation in Germany. The health system complains about high costs especially for the chronically ill. There seems to be evidence that the integration of caregivers helps to reduce the duration of the clinic stay, the amount of necessary medication, and speeds up the recovery process, and this is why the health system has discovered caregivers as a cost cutting resource. In 2008 we received more financial funds, and we received them quicker than before.

 

I would like to ask a question to all of you: Very often you focused on the need for adequate training for persons who care for the mentally ill. We have heard that two days are by no means enough, even four weeks without ongoing training is not enough. Maybe I am mistaken, but I never heard, that it is necessary to train the caregivers. Isn’t it irresponsible to leave mentally ill people for long periods to untrained persons, who themselves suffer from enormous stress?

 

I believe it is necessary to train caregivers intensively. Psycho education focuses on information about mental illnesses. This is not enough. I believe, that we need much more training in how to behave towards a mentally ill person, learn adequate coping strategies, know more about conflicts management, how to deal with our own emotions, for example our aggressions against our relatives. And especially important is that we learn how to take care of our health and to learn to lead a happy life despite the illness in the family. The questions remains: Who´s job is it?

 

As a last point I would like to highlight a special burden for caregivers which cannot be traced back to tight resources:

 

1.       Rejection by our sick family members: Often we are faced with the aggressions of our mentally ill family members and at the same time have to realize that their behaviour is a symptom of the illness. In spite of our own frustration we have go on supporting our child (or spouse). As Karp in his wonderful book “The burden of sympathy” puts it: We have to care in an empathetic way for persons, who sometimes hate us.

 

2.      Stigmatization of parents: It is not only the consumers, who suffer from stigmatization. As caregivers we suffer from the stigma of having a child with schizophrenia or depression. Implicitly and sometimes explicitly, we are told that there is something in the behaviour of the whole family or especially mothers which has led to the outbreak of the illness. The fact that the known hypotheses about mothers as a cause for schizophrenia have not been confirmed, is not very helpful for us.

 

And we respond to this: Many of us are permanently insecure about, how we should behave towards our mentally ill children (or partners). Whatever we do, we are accused of wrongdoing and we feel guilty: Either we do too much or too little. We tend to control our mentally ill children, because we fear that something terrible will happen, if we don’t. We are permanently concentrated on the situation of the mentally ill and neglect our other children or husbands or wives and last but not least we do not pay attention to our own interests and our health. How can a person constantly under stress, with physical and psychological health problems and feelings of guilt be an adequate and supportive environment for a mentally person?

 

Let me finish with something I heard yesterday: Dr. Saraceno from the WHO mentioned, that people are 1. citizens and only 2.  – maybe – schizophrenic. I would like to apply this to caregivers: We are as well 1. citizens and only 2.- sometimes caregivers.  We as well have the right to lead a happy and fulfilled life with our children, friends and our professional interests. And this is why we really need the help of professionals as well as our family members. Therefore we need:

 

·         To be partners in the recovery process

·         Adequate intensive training

·         Easier access to the medical, financial and social support system

 

I liked the idea of the King of Bhutan, who – as we learned today – demands from his government to promote the happiness of the people. Let us learn from this idea: Not only consumers have to be helped to lead a fulfilling life, but caregivers as well want to be happy: And this I not a selfish concern: I strongly believe, that a happy care giver is a better caregivers.

 

Janine Berg-Peer , Berlin

October 2008

 

Die deutsche Übersetung kommt auch noch.