You learn to live in a deadly disease. VSD syndrome: a serious illness of healthy people

If a man with a bald head and a medical mask on his face is sitting in front of you, do not rush to feel sorry for him. Perhaps right now he feels like a warrior of an invisible front who has won another day from illness. This is how I felt, flaunting the perfect skull shape after a bone marrow transplant. And try to avoid phrases like "hold on", "everything will be fine", "the main thing is to think positively." It’s annoying, but it’s really annoying. Because these phrases devalue the terrible thing with which you live every day, simplifying and flattening everything that happens to you. No, no memorials for courage are required. What is needed is such a simple (and so complex) complicity. No phrases on duty.

Serious illnesses are not so common in our life (which is undoubtedly pleasing), and no one teaches us how to deal with those who find themselves in such a situation (which creates a lot of misunderstandings). Therefore, I will try to briefly sketch out what I missed so much during that period of my life when I was that "seriously ill".

But first I would like to remind you that communication with a seriously ill person can be a difficult task that requires significant "involvement", and it is not your sacred duty. If you don't have the strength, psychological and emotional resources, don't do it. You have every right to protect yourself from difficult situations and stress. After all, no one else should take care of you. And most likely it won't.

So, let's begin:

1. Don't look at a sick person as if they were dying. Perhaps he will still survive, and he will remember your view as a person from the other world. Today he is ill, but alive. Define the dialogue by this fact.
2. No false vigor. "Hold on, soldier!" - it is somewhat immoral to give out such texts to a person who, perhaps, has been saving up strength for half a day to get to the toilet, for two months has not had the opportunity to look out the window and for six months now has been eating mashed soups and vegetables, it is somewhat immoral. I know these phrases are the easiest to hide behind. We were not taught other words. But it would be great for you to think for a couple of minutes before the conversation, and still find your personal words filled with your pain, sympathy and faith.
3. If you can help something, help. Usually, the disease is associated with a lack of vitality, limited movement and the tedious monotony of painful procedures. Therefore, if you can “dilute” this dullness with something: buy and bring an interesting book, upload a new fascinating series, record a CD with music, solve a bureaucratic issue (make the necessary information) - do it.
4. Usually the greatest burden of responsibility and involvement in the disease falls on the closest family members. Including young children or old parents. You can also support them: bring gifts to the little ones or take them to the theater, talk to the elders, sharing their fear and pain.
5. Be prepared for aggression and lack of gratitude. Here I will write about myself again. On the most difficult days, when I didn’t have the strength to open my eyes, I passionately hated everyone who in the morning was free to get out of bed, walk to the toilet, take a shower, look out the window and make breakfast. Because I could not afford any of this. For half a day I was gaining strength to get to the toilet, taking a spoonful of porridge so that in a few minutes I could say goodbye to it. No auto-training then could help me feel warmth or gratitude to anyone who was outside the hospital at that moment.
6. And one more point, which for some reason is not very accepted to pay attention to in our hospitals. This is a common physical pain. The patient himself takes it for granted. He does not have the strength to think and look for ways out of a difficult situation. The physician is usually keen on curing the underlying ailment. But if you have the strength, attention to the situation, you can always help: remind the doctor about severe painful sensations, insist on finding solutions, bring the necessary drugs.
7. A person who has a serious illness is usually quite aware of the likelihood of his cure (20% is the probability that a relative's bone marrow is suitable as a donor, 70% is the probability of surviving after a bone marrow transplant). Therefore, there is no need to flaunt your incomplete information that "my aunt's cousin was cured by eating bacon" or various information about alternative methods. You can personally believe in them. But do not impose them on a person, for example, currently undergoing chemotherapy. And then he even looks like a fool in his own eyes: he is lying here, suffering, but it was necessary, just to eat bacon.

I don't want this experience for anyone. But it is better to be ready for it in order to try to be support and friend where it is not so easy to do it.

Dinara Akhmetshina

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You cannot heal the body without healing the soul.

Socrates

The phenomenology of the crisis

Having a seriously ill person is not an easy test for the whole family. The category “family with a seriously ill person” includes families where one of the members suffers from any serious somatic or neuropsychiatric illness, alcoholism, pathological jealousy, etc.

The illness of one of the family members is accompanied by an increase in emotional stress in the family and physical stress in some of its members. Complaints about neuropsychic stress, uncertainty about the future, anxiety are most often encountered when talking with family members of alcoholics and jealous people (Eidemiller E.G., Yustitskis V.V., 2000). Scandals, unexpected disappearances of the patient from home, agonizing anxiety for him, the inability to build long-term family plans - all these events significantly complicate the life of such a family.

Psychologists have conducted studies aimed at studying the consequences of mental illness for the patient's family, de-hospitalization of the mentally ill (Brown G. E, Monck E. et al., 1962). A number of studies are devoted to the study of families with schizophrenic patients (Bateson G., 2000).

All the difficulties faced by the patient's family can be divided into objective and subjective. Among the objective ones are the increased expenses of the family, the unfavorable impact of the current situation on the health of its members, disturbances in the rhythm and routine of family life. Among the subjective difficulties, various experiences and emotional reactions are distinguished in connection with a mental illness of one of the family members:

□ confusion due to the complete helplessness of the patient;

□ confusion caused by the unpredictability of his behavior;

□ constant concern about the future associated with the inability of the patient to solve his life problems on his own;

□ feeling of fear;

□ feelings of guilt; About depression;

□ disappointment;

□ frustration;

□ rage caused by the insolubility of the problem of the disease itself.

Such family reactions are normal and natural, since they are due to the extreme complexity of the situation and the inability to influence it.

The appearance of a mentally ill person in a family leads to a significant change in its structure and relationships between its members. As a rule, there is a “stratification” of the family into three subgroups, whose members are involved to varying degrees in interacting with the patient and caring for him (Terkelsen, 1987):

1. The first group, or inner layer.Represented by a family member who takes on the role of the primary caregiver and who bears the brunt of daily care, supervision, and maintenance. Typically, this is a mother, sister or wife. The life of this family member is completely focused on the patient. If the latter has no or weakened social contacts, then this family member becomes a connecting link between him and the world and is responsible for its social adaptation. He constantly thinks about the needs and needs of the patient, takes care of their satisfaction. Most often, it is this person who searches for the causes of the disease or attempts to rationalize them, turns to specialists for help, reads special literature and contacts such families in order to support and gain new knowledge about the disease. As a rule, this person is responsible to society for the patient's behavior and the possible consequences of his disturbed behavior. Such a family member is the most sensitive and suffers most from any weakening and intensification of the symptoms of the disease.

His life is filled with constant concern for the sick. The worse the patient is doing, the more activity is required from the caregiver, who often sacrifices his personal life and interests.

2. Second group -these are family members who are less involved in day-to-day care, while retaining the possibility of realizing personal plans and interests. They continue to lead an active social life (work, study, meet friends, etc.), but their emotional connection with a sick family member is strong enough. It is more difficult for them to break away from their many professional, educational, personal and other affairs, as a result of which they often worry that the deterioration of the patient's condition may become a threat to their usual way of life and their plans for the future. Such fears and the resulting feeling of guilt can complicate relationships with the main caregiver of a sick family member and provoke defensive behavior (they may suddenly have “super important” professional and other non-family affairs). As a result, alienation (violation of the cohesion parameter) often arises between the main guardian and other family members.

Example

A woman with a 12-year-old daughter Svetlana, a disabled child, applied for psychological counseling. The girl underwent surgery to remove her eye, is currently socially adapted, has good school performance.

The girl's mother is a typical guardian representative. After the birth of her daughter, she devoted her whole life to her. During these years, the mother took care of the girl, organized expensive treatment for her in Germany. For this, she opened her own business; met mothers like her and initiated the creation of a self-help group for women with disabled children.

The girl's father was the liquidator of the consequences of the accident at the Chernobyl nuclear power plant, and the birth of an unhealthy child is a consequence of the radiation dose he received. After the birth of the girl, he began to abuse alcohol. She often behaves very aggressively towards her daughter: in a drunken state she yells at her, curses, wishes her death. Such brutal behavior of the father, who is a member of the family of the second group, is an attempt to protect himself from feelings of guilt and despair, from the inability to change anything.

3. Third groupare close and distant relatives who know about the problems associated with the patient, who are interested in him, but have practically no everyday contact with him. As a rule, they have their own view of what is happening, most often associated with accusations against the main guardian and other family members, which can increase the feeling of guilt and helplessness of the latter.

Among the factors stimulating the growth of dissatisfaction in the family as a result of the illness of one of its members, E. G. Eidmiller and V. V. Yustitskis (2000) identified the following:

1. Feeling of guilt (one's own and the patient's) for the illness.A family suffers especially hard from the illness if its members blame themselves and the patient for what happened. The severity of the experience depends on the ideas of family members and other relatives about the disease, its causes and the degree of the patient's own guilt in its occurrence and continuation. K. Terkelsen describes the two most common points of view of family members of a mentally ill person on the causes of the disease:

□ biological: families who consciously or unconsciously adhere to this theory, see the causes of the disease in some changes in the patient's body that do not depend on the patient's will. They may experience great confusion before the manifestations of the disease, overestimate the possibilities of drug treatment, they are often tormented by fear for children (that the disease is transmitted genetically) or for themselves (that the disease, contrary to all the assurances of the doctor, is contagious). At the same time, they are not inclined to blame each other for the illness or see in it the patient's punishment for his actual or imaginary sins;

□ psychological: its supporters tend to blame themselves and other family members, the patient himself. They may think that “the mother was too protective,” “the father was too strict,” “the sister rejected,” “the brother did not help,” etc. and that, therefore, they are all somehow to blame for the development of the disease. ... In addition, there is a certain aggressiveness towards the patient (“when he wants, he understands”, “if he tried himself, things would go better”) - relatives often believe that he himself is to blame for not getting well, because he does not make enough effort to do this. In this case, family members are gradually divided into accusers and accused. For the sake of their peace of mind, they try not to voice accusations aloud and not discuss who is most to blame. But covert recriminations can create a special atmosphere of painful silence around certain topics.

2... The behavior of a sick family member.Mental disorder is often accompanied by changes in the patient's behavior and brings with it demoralization, a more or less profound loss of self-control and empathy in relation to the feelings of others. Thus, studies of mentally ill people have shown that even the most bizarre behavior of a sick family member (incoherent speech, hallucinations, etc.) does not create such a strong tension in the family as his irritable, aggressive behavior.

3. Duration of illness.Both the onset of the disease and all its relapses are a significant source of subjective difficulties for the family. Most mental illnesses have fluctuations in clinical manifestations - temporary improvements are replaced by temporary worsening. Each such change deeply affects the family. Improvement causes a surge of hopes for a return to normal life, worsening gives rise to new deep disappointment. Only the accumulation of experience leads to the fact that the family is gradually liberated and ceases to be emotionally dependent on temporary fluctuations in the course of the illness.

4. The degree of disruption to the everyday life of the family.A family member's illness leads to the formation of functional voids. For example, usually the father performs a number of extremely important family functions in the family, the basis for which is his authority, personal qualities, by virtue of which his behavior is “teaching” - on his example, children learn how to solve various problems that arise in the course of their relationship with others; the father's judgments are of increased importance, persuasiveness for them. The exact opposite in this respect is the situation when the father suffers from alcoholism or reveals psychopathic character traits. A weak-willed, aggressive, dependent father, who himself requires care, creates a “functional emptiness” in the process of education.

The specificity of the family's experience of this crisis is due, in addition, to the age of the family member when he developed the disease; the presence or absence of visible defects in physical development, the so-called "weight of the defect" (Guzeev G. G., 1990). It is understood as an integral assessment of the medical and social consequences of the defeat and the time during which these consequences are observed.

There are several stages in the family's experience of this crisis event. They manifest themselves in an increase and then a decrease in tension and are accompanied by subjective experiences of different type and severity (feelings of anxiety, confusion, helplessness, etc.) and searches different ways adaptation (by trial and error, the formation of protective "family myths", revaluation of values, etc.). There are individual differences in how families experience this abnormal crisis. Stuck at one of the stages, different speed and order of their passage is possible.

Shock stagecharacterized by the appearance in family members of a state of confusion, helplessness, sometimes fear of the outcome of the disease, their own inferiority, responsibility for the fate of the patient, a sense of guilt for not doing anything to prevent the onset of the disease, or doing something that aggravated the situation. These experiences lead to a change in the usual lifestyle of family members, often becoming a source of various psychosomatic disorders and having a negative impact on relationships both within the family and outside it. Sometimes unhappiness unites the family, makes its members more attentive to each other, but more often a long-term illness, the lack of effect from the treatment and the emerging state of hopelessness worsens the relationship between family members. Basically, this phase is rather short-lived.

On stage of denialfamily members are simply not able to adequately accept and process the information received and use a variety of means of protection that allow them to get away from the need to admit the fact of the disease, which reduces the adaptive potential of the family. At the systemic level, this can manifest itself in the emergence of family myths that support family functioning, but based on an inadequate understanding of the family at this stage of its existence. Sometimes the anxiety and confusion of family members are transformed into negativism, denial of the diagnosis, aimed at maintaining the stability of the family. To achieve this goal, huge efforts and resources can be spent, which only brings further disappointment in the future.

Example

The family, whose member (a 34-year-old man) was hospitalized with a diagnosis of schizophrenia, took him out of the hospital without waiting for the end of treatment. The functioning of this family is aided by the myth that a young man is going through a midlife crisis in this way. His inappropriate behavior, isolation, lack of social contacts, outbursts of aggression are viewed by family members as a manifestation of his creative nature. Such thoughts allow the family to avoid the need to accept the fact of mental illness in the family, to cope with fear and, using the mechanism of denial, to live on without changing the previous way of life.

Denying the fact of the disease, family members may refuse to examine the patient and take any corrective measures. Some families express mistrust of the consultants, repeatedly turn to various scientific and medical centers in order to cancel the “wrong” diagnosis. It is at this stage that the so-called “walking in a circle of doctors” syndrome is formed (Mairamyan RF, 1976). A response option is possible when families accept the diagnosis, but at the same time are particularly optimistic about the prognosis of the disease and the possibility of a cure.

As family members begin to accept the diagnosis and partially understand its meaning, they sink into deep sadness - stage of sadness and depression.The resulting depressive state is associated with the awareness of the problem. The presence of a seriously ill family member negatively affects her life, the dynamics of marital relations, and leads to disorganization of family roles and functions. Feelings of anger or bitterness can lead to isolation, but at the same time find a way out in forms of “effective mourning”. Often there is a decrease in interest in work, a rejection of the usual forms of leisure activities. The need to care for a sick family member and provide special ongoing care to them can lead to ambivalent feelings. This syndrome, called "chronic sadness", is the result of the constant dependence of family members on the needs of the patient, their chronic frustration due to his relatively stable state and the absence of positive changes.

Mature adaptation stage characterized by the acceptance of the fact of the disease, a realistic assessment of the prognosis of the development of the disease and the prospects for recovery. At this time, all family members are able to adequately perceive the situation, be guided by the interests of the patient, establish contacts with specialists and follow their advice. At the system level, structural reorganizations are taking place, primarily related to role interaction.

It should be emphasized that the presence of a sick family member can lead to a decrease in the social status of the family as a whole and its individual members. Problematic behavior of the patient can cause the family to come to the attention of the police and medical institutions. Neighbors, school, employees of the patient, that is, the immediate social environment, become witnesses of deviations in behavior. On the other hand, members of such a family themselves are usually embarrassed by the fact that there is a sick person among them, and they hide it in every possible way: A kind of vicious circle is formed: the presence of a sick person in the family makes it very sensitive and vulnerable in relation to the assessments of others. This leads to family withdrawal from social contacts, which, in turn, maintains feelings of rejection. Children of school age are especially sensitive to the decrease in the social status of the family: they often become the object of ridicule, group rejection, which complicates their relationship with peers.

Psychological help

Usually, a family member who is responsible for caring for a seriously ill person turns to a psychologist. An attempt to solve their own problems is due to the great physical and psychological stress, the presence of a significant number of personal and interpersonal difficulties associated with the situation and is caused by the need to plan further life (social, professional, personal).

Psychological assistance to a family with a “problem” adult

Cases of treatment regarding a “sick” family member can be summarized in three main options:

1. A family member is really sick, as evidenced by numerous hospitalizations, inappropriate behavior, the presence of a psychiatric or medical diagnosis, systematic intake of medications, etc.

2. A family member, according to the applicant, behaves inadequately, which suggests the presence of a certain pathology, in connection with which the client faces the need to build his life taking into account this factor.

3. The behavior and reactions of a “sick” family member do not give grounds to assume that he has any mental pathology, which rather indicates the presence of problems in family relationships and inadequate perception of the family situation by the applicants themselves.

Psychological assistance can include solving the following tasks: 1. Informing the family member who has applied about the nature of the disease or referring him to a specialist who can competently explain what kind of diagnosis the patient was diagnosed with, how the disease develops and how to behave with such a patient.

2. Support, which means that the psychologist tries to listen to and understand the client, taking into account the specifics of his situation. If the latter wants to leave a sick family member or decides to break off relations (for example, a wife wants to divorce an alcoholic spouse), place the patient in a special medical institution, then he may experience feelings of guilt, shame, moral pressure from others and other family members. The task of the consultant is to help the client understand his feelings and experiences and support his decision about this situation, without exerting pressure and without using socially approved norms and stereotypes.

3. Discussion of such special issues as acceptable ways of interacting with the patient and handling their own feelings that arise in response to possible reactions of the patient. It is advisable to start by identifying the client's expectations of the patient and, if necessary, correct them in accordance with the nature and severity of the disease. There is a need to discuss the responsibilities that can be assigned to the patient that would enable him to remain included in the family system, adapt to the illness, and continue to function as a family member.

Providing psychological assistance to a family with a “problem” child

IN recent times there is an increase in the number of children with various developmental disabilities, difficulties in learning and school adaptation, disorders in the emotional and personal sphere, etc., which makes it necessary to consider the features of the organization of psychological assistance to families with similar problems.

It is advisable to organize an integrated approach to diagnostic and corrective work with such children, to involve a variety of specialists (speech therapists, teachers, defectologists and neuropsychiatric specialists). At the same time, the effectiveness of psychological assistance to a family with a “problem” child is largely determined by the psychotherapeutic component of work with the family.

1. Revealing the fact of violation.

2. Informing parents and referring the child to specialists of the required profile (psychiatrist, pediatrician, neurologist, defectologist, speech therapist, etc.).

3. Psychotherapeutic work with the child's relatives.

The effectiveness of psychological assistance to the family, according to M.M.Semago, depends on the willingness of the parents to perceive and assimilate the information provided by the specialist. If the family at this time continues to deny that there is a problem or its members are under the influence of strong affects, then all attempts to inform parents about the need for certain steps in the development and upbringing of the child may be premature.

The tasks of the psychologist are:

1. Creation of conditions for an adequate perception by parents of a situation associated with deviations in the development of their child, psychological readiness for long-term work on his development, correction and education.

2. Working out the feelings of guilt experienced by the parents, overcoming the stressful state and achieving the emotional stability of family members.

To effectively solve the problems of counseling, it is necessary to assess the nature of the response of this family to the crises that have taken place in its development, as well as ways to overcome them as resources of this family.

The specificity of providing psychological assistance to a family with a problem child lies in the fact that, as a rule, the family comes to the consultation forcibly, on the recommendation of a specialist who suggested that the child has developmental disorders. In most cases, this means a lack of voluntariness and, therefore, lack of personal motivation to receive psychological help. In some cases, parents conceal (consciously or unconsciously) unfavorable features in the development of the child, which presents additional difficulties for an objective diagnosis of the level of his development. Therefore, in the case of working with the family of a problem child, it is necessary to increase the parents' motivation for long-term interaction with a psychologist in order to receive the necessary help.

During first meeting with the family,having a "problem" child, a counselor psychologist solves the following tasks:

1. Establishing contact with family. An important factor in establishing contact with the family with the “problem” child is the attentive and supportive behavior of the psychologist. At the first contact, it is advisable for the psychologist to collect information about this family, its history, the history of the child's development. Parents can ask questions that interest them and clarify the nature of the upcoming work. This makes it possible to clarify their expectations.

2. Informing parents. At this stage, the consultant can inform the parents about the possibility of receiving help from other necessary specialists (defectologist, speech therapist, neuropathologist, narcologist, psychiatrist).

3. Preliminary identification of the parent's request. If necessary, the psychologist assists in formulating and clarifying the request, informs the parents about how it can be useful to this family.

4. Concluding a contract with the family. The contract (agreement, agreement) is a form of consolidation of the relationship between the consultant and the family. The contract fixes the agreements accepted, the mutual rights and obligations of the family and the consultant, as well as the consequences of their violation. In the case of working with the family of a “problem” child, the conclusion of a clear contract is necessary, especially in a situation of insufficient motivation of those who applied. The initiator of the conclusion of the contract is the psychologist-consultant. The contract may contain the following items: duration of work; goals and objectives of the work; desired results; the approach and methods of work of the consultant; duties of a consultant; obligations of the client; ways of assessing intermediate and final results; settlement procedure (coordination of the cost of services, payment each time for one session, prepayment, payment method); formal aspects (transfer of sessions, absence and lateness, the situation in case of illness of a family member or a psychologist); penalties in case of violation of the contract in relation to the consultant, client; grounds for termination of the contract; force majeure circumstances; the term of the agreement (from the moment of its signing by both parties).

The contract is usually negotiated and concluded orally. When concluding it, the consultant must be careful, tactful and carefully discuss all the points of the contract.

Efficiency subsequent meetingsdepends on the quality of the contact with the family established at the first meeting and its willingness to cooperate. At this stage of counseling, reflection of feelings and experiences of family members, support, empathic listening are relevant. The psychologist's use of the above techniques "triggers" such therapeutic factors as instilling hope, the universality of experiences. At this stage, the consultant also resorts to confrontation as a method of psychological influence: he points out to parents contradictions in their perception of the problem, in the value system, reveals irrational attitudes and catastrophic expectations.

Possible alternatives for solving the problem are identified and openly discussed. The counselor encourages family members to analyze all possible options without imposing their decisions, helps to put forward additional alternatives, to figure out which ones are suitable and are realistic from the point of view of previous experience and a real willingness to change and accept the fact of the child's illness. Planning an action plan to tackle existing problems should also help the family to realize that not all problems are solvable: some difficulties take too long to overcome; others can be addressed in part by reducing their destructive, disruptive impact. The feasibility of the chosen solution is checked ( role-playing games, “Rehearsal” actions, etc.).

At this stage, there is a consistent implementation of the plan for solving family problems. The consultant helps its members to build life taking into account the circumstances, time, emotional costs, realizing that there is a possibility of failure in achieving goals. Of particular importance at this stage is the support by the counselor of positive changes in the life of the family.

heavy - severe accident severe misfortune severe illness severe struggle severe depression difficult task severe punishment severe contusion severe resentment heavy burden heavy duty heavy operation heavy responsibility heavy ... Dictionary of Russian Idioms

disease - a severe illness a real illness a general illness a serious illness a fatal illness a terrible illness a serious illness a serious illness a terrible illness ... Dictionary of Russian Idioms

Alzheimer's disease ... Wikipedia

Alzheimer's Disease The brain of an elderly person is normal (left) and with pathology caused by Alzheimer's disease (right), with an indication of the differences. ICD 10 G30., F ... Wikipedia

ICD 10 A81.0 F02.1 ICD 9 046.1 OMIM ... Wikipedia

Creutzfeldt Jakob disease ICD 10 A81.0 F02.1 ICD 9 046.1 ... Wikipedia

Creutzfeldt Jakob disease ICD 10 A81.0 F02.1 ICD 9 046.1 ... Wikipedia

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ICD 10 A81.0 F02.1 ICD 9 046.1 ... Wikipedia

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