Terminally ill Aging Holocaust Survivors: Considering the Effectiveness of Bearing Witness and Completing a Written Life History

Faith Malach, MSW, RSW
Baycrest Centre for Geriatric Care,
Toronto

As the number of aging Holocaust Survivors increases, one must raise the question of whether or not, bearing witness to the horrors experienced during the Holocaust, serves as an effective or beneficial means of resolving past issues and experiences for survivors.

Increasingly, individuals in major cities around the world have the opportunity to visit museums and memorials dedicated to educating and remembering the Holocaust. In one such Holocaust Centre in Toronto, visitors are provided with a guided description through time, where photographs and objects depict the lives of many European Jews prior to the war. Next, a presentation vividly paints the horrors and tragedy that occurred when the Nazi Party was formed and Adolf Hitler was appointed Chancellor of Germany. Finally, guests are presented with a personal account of the life of one strong individual who survived persecution.

It is amazing, that although museums, monuments and tributes remembering the Holocaust have become more prominent, there still exists so many untold stories, undisclosed secrets and unidentified needs for survivors and their second and more recent third generation family members. There has been an obvious shift in age for survivors and today, these innocent victims who have been subject to unimaginable loss and suffering, are reaching later-life where they may once again be facing the loss of loved ones, as well as their own aging, deterioration of health, or death. These circumstances may be associated with the resurfacing of past traumatic loss.

Although literature on the Holocaust is growing and major themes for focus of study have appeared, in general, little attention has been made to understanding the effects of the Holocaust on aging, and more specifically how the experience of massive trauma relates to the experience of death and dying for Holocaust Survivors.

MAJOR THEMES: Consequences of the Holocaust: Post-Traumatic Stress Disorder (PTSD) and Survivor Syndrome

Though literature may focus on various aspects of surviving the Holocaust, this writer found that most authors included in their writing at least a small section which described the horrors of the Holocaust. Descriptions of the Holocaust recount the terrifying experiences of kidnapping, torture, starvation and forced labour within concentration camps. Moreover, authors describe how survivors and victims of the Holocaust witnessed murder and brutality, experienced total helplessness, medical experimentation, loss of identity and loss of family (Allodi,1994; Newman, 1979; Rosenbloom, 1983, 1985).

As if the suffering during the Holocaust was not enough, the literature indicates that the suffering continued for survivors following their liberation. The literature suggests that, as a result of the tremendous brutality experienced during the Holocaust, survivors may present with traumatic symptoms such as lack of trust, intrusive thoughts, distressing nightmares, physiological reactivity to traumatic reminders, excessive guilt, intensified fear and depression (Krystal, 1981; Rosenbloom,1983,1985).

From a psychological perspective, following World War I, when reactions to trauma were first described, symptoms were formally classified as "Gross Stress Reaction" in the DSM-I. The DSM-II then minimized the reactions to trauma and changed the diagnosis name to "Transient Situational Disturbance". Once again, the symptoms were renamed, when in 1980 the DSM-III categorized the anxiety disorder as "Post-traumatic Stress Disorder (PTSD)". In May of 1993, in concordance with the DSM-III revisions, the DSM-IV diagnosis remained as PTSD, based on six criterion groups, which focus on the exposed traumatic event as well as the re-experienced trauma and disturbing symptoms (Allodi, 1994; Tomb, 1994). The DSM-IV diagnosis of PTSD also included in its description categories of acute, chronic, and delayed onset of symptoms. These categories were created in order to take into account that symptoms may remain latent for many years following the traumatic event, sometimes only to appear following a "trigger" event (Allodi, 1994; Cohen, 1977; Tomb, 1994).

In addition to the DSM classification of symptoms experienced by survivors, the literature discusses "the Survivor Syndrome" which was coined by Krystal and Neiderland, after they observed the distinct symptoms of Holocaust victims (Allodi, 1994; Cath, 1981; Cohen, 1977; Newman, 1979). The characteristics of the Survivor Syndrome include, depression, loss of selfesteem, disturbance of body-image, survivor guilt complex, somatization, hypochondriasis, chronic anxiety, agitation, disruption in maturation, helplessness, and extended mourning (Cohen, 1977; Hirschfeld, 1977; Kinsler, 1978; Newman, 1979). In analytic terms, Hoppe describes the psychopathology of the Survivor Syndrome as a lack of basic trust, severe feelings of guilt, deep-rooted disturbances of body image, failure to adapt to a new culture or country, regression to infantile behaviour, and fixation upon one's childhood and lost family (Newman, 1979). Although the Survivor Syndrome is generally confirmed by the literature, Cath (1981) and Heilbronn (1994), point out the danger of overgeneralizing symptoms to all survivors and suggest that focus should also be placed on the potential for recovery of survivors.

Factors describing the adjustment of survivors are not prominent in the literature. Minor mention was made by Newman (1979) and Danieli (1981) that survivors who fled to Israel made more successful adjustment than those who settled outside of Israel. The explanation provided did not appear to be based on empirical testing. Rather, it was rationalized that adjustment was more successful in Israel where Holocaust Survivors were welcomed with open arms and could enjoy the perceived safety afforded by the Jewish Homeland. It is clear that more research needs to be conducted on the adjustment patterns of survivors and their ways of coping after the Holocaust.

Children of Survivors - Second Generation

The literature on the Holocaust not only focuses attention on the survivors, but also on the second generation or children of survivors (Fogelman and Savran, 1980; Kestenberg, 1983;).

The children of Holocaust Survivors are considered to be a distinct group as they are perceived to be living "in a double reality, that of today and that of the parents past" (Kestenberg, 1983, p.24). The literature describes a common behaviour of survivors following their liberation. As a result of their tragic and massive loss, survivors felt alone and abandoned and in order to replace their lost families, they immediately married other survivors and bore children (Newman, 1979). The literature stresses that children created meaning and hope for survivors and that children were sometimes viewed as compensation for the survivors loss and pain endured during the Holocaust (Cohen, 1991). Wardi (1994) writes that children represented the reason for their parent's living as well as becoming "memorial candles" symbolizing victory over the Nazis.

A significant amount of the literature focuses on the distinct relationships between survivors and their children (Cohen, 1991; Fogelman and Savran, 1980; Newman, 1979; Rosenbloom, 1983). Firstly, literature on survivors and their children addresses the subject of communication, and indicates that children of survivors may find it difficult to discuss the horrors their parents experienced. The explanations for this phenomena suggest that difficulties arise because the children wish to protect their parents from painful memories, or may remain silent as a way of coping with their own fears and anger (Fogelman and Savran, 1980).

Secondly, the literature suggests that children of survivors may need to understand, identify and take on their parents' suffering in order to be closer with them (Fogelman and Savran, 1980; Newman, 1979). However, in contrast with those findings, other studies suggest that the children of survivors may feel obligated to continue telling the history and experiences of those persecuted and tortured (Newman, 1979).

The literature also describes the attachment relationship of survivors and their children. The literature points out the overprotective nature of many survivors; as a result of the loss of their own family members, survivors experience extreme separation anxiety and enmeshment, as separation and loss is associated with death, disappearance and abandonment (Newman, 1979; Wardi, 1994). As can be imagined, parental expectations placed stress on the children of survivors and the struggle with control was an issue. One study conducted in Montreal, which focused on control issues between survivors and their children, found statistically significant differences between survivors and non-survivors regarding self-control. The results of the study indicated that survivors had greater difficulty controlling their children, therefore supporting the belief that children of survivors may reject parental expectations. Furthermore, survivors often placed high demands for achievement on their children with hopes that the children would make up for the losses of the past (Newman, 1979). In response to their parents' demands, children may feel guilty separating and attempt to fulfill their parents' expectations, or in contrast, they may reject their parents' expectations and separate or rebel (Newman, 1979).

Wardi (1994) looks beyond the childhood attachment to survivor parents and explains that, while some second generation children succeed in establishing long-term relationships, other children of survivors have difficulty with attachment in relationships and balancing closeness and distance.

The literature on children of survivors also addresses whether children experience similar symptoms of distress as their parents. Fogelman and Savran (1980) discuss their observations from leading nine short-term groups for adult children of survivors, and their findings indicate that children of survivors may experience symptoms similar to those of their parents, including guilt, nightmares, depression, anxiety, aggression, somatization and alienation (Kahana, 1981; Newman, 1979). Finally, Herzog (1981) makes mention of a study by Barochas and Barochas that found that, the children of survivors show symptoms which would be expected if they actually lived through the Holocaust...These children wake up at night with terrifying nightmares of the Nazi persecution, with dreams of barbed wired, gas chambers, firing squads, torture, mutilation, escaping from enemy forces and fears of extermination (p. 212).

It appears from what is presented in the majority of literature, that children of survivors may experience similar symptoms of trauma as their parents. However, just as the literature on Holocaust Survivors recognizes that not all survivors experience negative symptoms, the literature also notes that children of survivors may adjust well to the impact that the Holocaust had on their parents (Csillag, 1993; Fogelman and Savran, 1980; Newman, 1979).

In response to the findings that "survivor" symptoms may be experienced by children of Holocaust victims, a New York group has formulated a "child of survivors profile" and another study group has been formed in Boston comprised of analysts treating children of survivors (Herzog, 1981). Also noted in the literature is the International Association of Survivor Children, which was formed to ensure that the Holocaust is not forgotten (Rosenbloom, 1983). Hopefully, programs and research on children of survivors will expand and lead to a greater understanding of this populations experiences, suitable treatment and successful adjustment.

Grief and Mourning

The literature on the Holocaust also discusses the issue of grief and mourning for survivors. Many survivors lost most of their friends and family during the Holocaust, without the opportunity to say their goodbyes. Within the concentration camps, mourning was in fact dangerous, as "Tears and crying, wailing and loss of self-control were the most dangerous reactions in the concentration camp. Such outbursts would have been the reason for the cruel enemy to select the pathetic victim at once for the gas chamber" (Cohen, 1991, p. 227). After the war, survivors continued to find difficulty mourning their losses, as survivors had no place to mourn, no cemetery to visit and no monuments honouring those left behind (Wardi, 1994). As well, the literature suggests that some survivors experienced extreme guilt labelled "survivors guilt" for having lived through the Holocaust while so many other individuals perished (Cohen, 1977, 1991). Rosenbloom (1985) identifies that survivors' guilt may resurface in later life when aging holocaust survivors once again experience the loss of loved ones. It is important when working with survivors, that one recognize that mourning the loss of loved ones is a process that continues throughout life for the survivor and that the survivor may require support during their lifelong grieving.

Aging Holocaust Survivors

Today, survivors of the Holocaust are in their sixties, seventies and eighties, approaching the losses that accompany aging and later life. Danieli (1981) writes that "Old age in itself is potentially traumatic for survivors" (p. 11). The literature on aging survivors suggests that loss suffered during the Holocaust, may resurface in later life. It is important that health-care providers understand and prepare for the possibility of re-traumatizing experiences. For example, as survivors lose loved ones, they may re-experience feelings of abandonment and loss (Danieli, 1981). Furthermore, as survivors age and may require institutionalization, they may experience emotions similar to when they were previously taken from their homes only to be placed in ghettos and concentration camps (Cohen, 1991; Danieli, 1981). Danieli (1981) describes in great detail that hospitalization frequently brings out psychotic-like delusions of being in a camp again. The survivors are again confined and given numbers....They may see the doctors as Nazis. They may feel that they are being tested, restrained, and operated on as though they were undergoing Nazi experiments (pp. 197-198).

Furthermore, Segall (1994) writes that "nursing homes may trigger many memories of the Holocaust. A shower may look like a gas chamber. An elevator may look like a deportation train. A screaming, incontinent housemate may sound and smell like a bunkmate at a concentration camp" (p. B-1). Similarly, Cohen (1977) writes that patients may feel helpless and dependent on doctors and nurses, whom they may have difficulty trusting. Hirschfeld (1977) provides a statement to illustrate this of a survivor who commented to nursing staff "be sure to lock the door; never let a male nurse come in while I'm not decent" (p. 1189). It is understandable how survivors may be hesitant and fearful of trusting medical staff in an unfamiliar environment, following their experience of being led to believe that families would be taken care of and provided for, during the Holocaust.

The literature also makes reference to the importance that survivors place on their body image, strength and mobility. Cohen (1977) explains that in the death camps, inmates were forced to cut their hair, walk around unclothed and often looked skeletal as a result of starvation. Furthermore, inmates were selected for survival based on their strength and mobility. As Rosenbloom (1985) states, "disease meant an automatic death sentence" (p. 188). It is understandable how aging survivors may become fearful of torture and death, when they begin to lose functioning of body parts or lose weight as a result of illness. As well, the literature also discusses how survivors who lose the control of bodily functions may recall the humiliation and helplessness experienced in the concentration camps when they were forced to dispose of natural waste in overcrowded boxcars and barracks (Cohen, 1991). Moreover, a request for a survivor to expose one's nakedness may result in fear or humiliation and prescribing medication may cause paranoia (Cohen, 1977). Hirschfeld (1977) shared the comment of one survivor who accused the nurses and doctors of experimentation; "You're just experimenting on me with all these tests. They didn't get me, so you are trying" (p. 1188).

Not every possible situation that may occur in an institution is mentioned in the literature as a potentially difficult experience for a survivor, yet, one could postulate the possible negative experience that a survivor may be faced with. For example, a survivor may experience difficulty with intrusive tests, bathing and showering, loud noises, visiting pet programs, medical staff in lab coats, constant room changes and crowded hallways.

Health care providers must be aware of the potential distressing reactions of survivors prior to their occurrence, so that survivors do not experience re-traumatization. Health care providers must also be aware of how the aging of survivors impacts on the lives of second generation survivors. Wardi (1994) states that the second-generation member may experience inner conflict with a feeling of dual loyalty towards surviving parents and loyalty to oneself. This conflict may occur for many reasons. Firstly, due to the tremendous loss of family during the Holocaust, families of survivors may be small and the responsibilities of caring for an elderly parent may rest upon the children. Children of survivors, with little reference or model for caring for an aging parent, may feel resentful, overwhelmed and unsure of how to assist their loved one (Cohen, 1991; Danieli, 1981). Furthermore, Cohen (1991) discusses how children of survivors may not be able to care for their aging parents, as a result of accumulated feelings of resentment due to the enormous expectations placed upon them by their parents, as children of survivors. In contrast, children of survivors may feel guilty for their parents' suffering and be devoted to caring for them as best as possible (Cohen, 1991; Wardi, 1994).

It is evident that researchers have begun to take an interest in the experiences of aging Holocaust Survivors. Surely though, as the number of aging Holocaust Survivors increases further, health care workers will need to place increasing importance on the findings in the literature and continue educating those working with this populations' special needs.

Bearing Witness

Another area of exploration for aging Holocaust Survivors is, bearing witness. The issue of retelling, bearing witness, or passing on the legacy of the Holocaust experience is extremely important for aging survivors. The literature explains that, survivors have a need to tell their life story and to teach future generations about the horrors that were experienced (Cohen, 1991; Krell, 1990; Rosenbloom, 1985; Weiss and Durst, 1994). Moreover, Cohen (1991) writes that "by allowing survivors to tell their stories, practitioners help them fulfill both the need for catharsis as well as the need to find meaning in all they have lost" (p. 231). Merowitz (1981) further details the benefits of bearing witness and suggests that, bearing witness may be an attempt to exact vengeance. It may be an attempt to secure comfort by persuading others to share suffering. "Bearing witness" may be an attempt to obtain reparation--to be remembered by another is to have one's existence validated in a way that transcends selfhood and personal time. Bearing witness may also be a try at extracting endurable meaning from what has happened. (p. 243)

Moreover, bearing witness may be involved in the process of retelling one's life, as past experiences are recalled and reminiscence acts as a tool for providing meaning to one's life and reducing the fear of dying (Weiss and Durst, 1994).

Life review and the telling of one's personal story, is becoming a useful tool through which Holocaust Survivors are able to reconcile their past horrors. Projects such as the Spielberg videotaping project have already provided a large number of Holocaust Survivors with the opportunity to record and retell their stories. When working with Holocaust Survivors, the use of bearing witness and sharing stories may provide a valuable and useful therapeutic device.

Methodological Limitations in the Literature

Although there is a substantial amount of literature on the Holocaust, the majority of writing is descriptive and relies on anecdotal data. Few pieces of the literature are based on empirical tests, qualitative or quantitative, and therefore, there is little mention of samples, hypotheses, methodologies, control groups and statistical findings. Therefore, readers have little idea as to how authors collected their data, or who provided the information. For example, Herzog (1981) makes mention of a study by Barocas and Baracas, yet no description of the sample or method of data collection is provided. Similarly, Danieli (1981) discusses the findings of a study by Kleinplatz on the adjustment of Israeli and North American children of survivors, but also fails to describe methodological points such as data collection, sampling and methods of analysis. Finally, Fogelman and Savran (1980) present their observations from their experiences with leading groups for children of survivors yet fail to provide the reader with specific information and examples from their method of evaluation, testing and sampling.

Of particular note, the literature on the Holocaust appears to generalize the symptoms and experiences of survivors and their children. Only a minimal number of writings include a sentence indicating that not all survivors and their families experience negative effects as a result of the Holocaust. This methodological issue is important, as the effects of the Holocaust may be as diverse as the actual experience of suffering through the Holocaust. Moreover, it may be important to be able to distinguish between the experiences of concentration camp survivors, those who survived through hiding, and those who escaped capture in order to identify similarities and differences among survivors. Readers must keep in mind that although the literature on Holocaust Survivors is often intriguing, the findings must not be generalized to include the entire population of survivors.

Finally, it is imperative that researchers keep in mind the ethics involved in research with Holocaust Survivors and their families. Survivors may have difficulty coping with their past and may wish to remain silent. Researchers must be respectful of survivors perceptions and fears and should be prepared to offer available support to survivors if research is expected to open painful wounds.

The literature has begun to address aging survivors, but still does not directly present information on those Holocaust Survivors who are diagnosed with a terminal illness and who are facing death. Based on the above findings in the literature, it would not be a great leap to assume that dying survivors experience effects of the Holocaust. The fear of death was strong during the Holocaust and may resurface upon a terminal diagnosis. Furthermore, the dying survivor may be fearful of treatment, pain and hospitalization. Separation from children following death might bring about attachment anxieties and survivors may have few family members to care for them during illness. As well, the literature already suggests that some survivors feel the need to tell their story in order to have others bear witness and to find meaning in all of their losses. These questions are extremely important and have yet to be researched in depth.

When considering any aspect of research with survivors, it is important to consider the ethical dilemmas or issues which may be present. The researcher must take into consideration, the past experience that the subject has had during the Holocaust, and must be respectful, sensitive and empowering to the subject, during their descriptive recollection of the horrifying events experienced. Furthermore, the subject must be told prior to beginning the research study, that emotional and difficult issues from their past will be discussed, and to ensure that the subject is both prepared and aware of the resurfacing of issues.

In determining the effectiveness of completing a written life history with a terminally ill Holocaust Survivor, it should also be established that the intervention assists the dying survivor in acceptance of the past and contributes to providing comfort and resolution prior to death. It may also assist the researcher in gaining insight and knowledge about the Holocaust Survivor's experience with death as well as the relationship between death and past experienced horrors.

It is extremely important to recognize that those who survived the Holocaust are quickly aging, and that it is necessary to both understand the individualized needs of dying survivors, as well as to understand and become educated about their horrifying pasts. Research must be conducted in order to ensure that this populations needs are met and that effective social work practice is being conducted.

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