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EmailAging Survivors and Potential Difficulties in the Healthcare System
Paula David, MSW
Baycrest Centre
Toronto
As Survivors age and require various supports from the healthcare system, it is vital that healthcare workers of all disciplines be aware of their unique histories. The impact of early life trauma coupled with the post war years of immigration, adaptation and now aging, are important factors for healthcare providers to consider. While we cannot fathom the horrors and losses that Survivors have endured we must be aware of aspects of everyday life that might add to their burdens. The most practical help is the willingness to listen. We can try to understand what they have experienced and how they have internalized those experiences and coped in the years that followed the war. As each story is unique and each person is different, there are no rules or guidelines to follow when caring for aging Survivors. Yet there are certain vulnerabilities and attitudes that many Survivors share that may offer insights that will help to sensitize, provide awareness and increase understanding about the people for whom you are providing care. It is best practice to be aware of as many potential concerns as possible in order to knowingly and sensitively respond to an individual. In order to listen well, the following should be kept in mind.
Vulnerability to loss and illness. Holocaust Survivors may be particularly vulnerability to experiences that are part of the aging process, such as loss, separation, illness or institutionalization. Because there was no opportunity to grieve or mourn during these catastrophic years, an experience of extreme stress may elicit volcanic feelings of the past and produce complicated problems.
Need to “bear witness”. Many Holocaust Survivors have a strong need to “bear witness.” As eye witness to this unbelievable chapter in human history, Survivors want to make sure that the Holocaust not be forgotten and that future generations know about it in ways that are not distorted. As is always the situation when responding to Survivors’ needs, there are also those who might consider ‘bearing witness’ as threatening or intrusive. As part of their coping mechanisms, many Survivors have over the years, constructed the narrative of their War Years in a manner that generates the least pain. In as much as we should honour a Survivor’s need to bear witness and document personal testimonials, we should also honour a Survivor’s need not to. In both instances, individuals may change their minds as they age and regardless of directive, we should be supportive.
Absence of Kin. Aging Survivors without kin may be a group at risk and may need increased community supports. These individuals are truly alone in the world, since the Survivor friends that constituted their ‘substitute’ families post War are either passed on or also coping with aging and loss.
Attitudes to doctors. Doctors in the Concentration camps performed selections where they decided who would die immediately and who would test their chances in the Camp. They supervised the killings in gas chambers, and ordered, directed and carried out direct killing of debilitated patients by means of phenol injections. Doctors were consulted on how best to keep selections running smoothly, on how many people to keep alive so that they could fill slave labour quotas, and how to burn the enormous numbers of bodies that strained the capacities of the crematoria. Some doctors selected people to participate in a range of medical experiments in the name of research, where people suffered a range of indignity and torture. Many did not survive these experiments. Doctors thus played a significant part in selecting who was to live or die.
Attitudes to Institutionalization. Entry into a nursing home or home for the aged is especially difficult for Holocaust Survivors for whom this is not the first experience with the loss of home, family, community, privacy and freedom. Memories of transportation to camps and ghettos may be reawakened as they enter what is likely to be their last home. Regardless of their War experience, Survivors were stripped of their personal autonomy, possessions and their lives were dependent on others. Institutions may generate those same feelings.
Facing Death. When facing their own death, some Survivors feel they will experience the same pain and humiliation as those who died before them in the Holocaust. Survivors may see death as a personal defeat and may still feel a profound emotional obligation to outlive their persecutors. Many Survivors have spent most of their lives committed to and struggling to survive. It may not be within their frame of reference to contemplate or succumb to death at the end of a life span.
Triggers: Environmental Factors that Trigger Difficult Memories
There are specific circumstances that have the potential to trigger painful memories for Survivors of the Holocaust. A trigger is something that may bring back difficult memories for a Survivor. Reminders of the trauma of the Holocaust are always present – different ones for different people. When a Survivor is ill, cognitively or physically impaired or just feeling vulnerable; different events, objects or comments may become triggers. Many of normal day-to-day activities or situations may be a trigger that provokes an adverse physical, emotional or behavioral reaction. For those Survivors who are hospitalized or in a long term care facility, many aspects of the institutional environment may invoke more than one trigger for residents who are Survivors.
It is important to remember that what may be a trigger for one individual may not cause another any difficulty at all. All frail Survivors may respond to any number of triggers with a specific memory or a flooding of memories, but the cognitively impaired may respond to a particular trigger and actually feel as though she is reliving the memory. Aging, sickness and impairment may make some Survivors susceptible to triggers that were not an issue when they were younger. Caregivers need to be aware of the more common triggers, and appreciate that even common triggers recall unique and different memories.
Advancing age and ill health has increased the need for Holocaust Survivors to have contact with health care workers in hospitals, institutions for the aged and in the community. Aging itself is a difficult process for Survivors and some Survivors are reluctant and even afraid to ask for help. Basic trust has been destroyed and many are suspicious and cynical. There is a need to understand how to provide the exceptional care to this extraordinary and heterogeneous group.
The following chart of “Potential Triggers for Holocaust Survivors” has been presented in an earlier edition of If Not Now. This is an updated and revised version that because of its importance, bears repeating.
Potential Triggers for Holocaust Survivors
Event or
Trigger Potential
Response Reason Response Tips
Taking a shower
• Refusal
• Unusual fear
• Crying,
• Screaming
• withdrawal
In the concentration camps, The Nazis herded Jews into the gas chambers, telling them they were going to shower. They were stripped and pushed into rooms that looked like shower rooms. They were crammed in for maximum efficiency, the doors were locked and poisonous gas came out of the shower heads. Be as reassuring as possible, and remind person that you are helping them to feel clean.
Offer options of bath or bed bath where appropriate.
Be very respectful of privacy and nudity.
Be prepared to offer flexible schedule
Check to see if family member’s presence would help.
Do not force the issue.Always identify yourself and explain the reason for your actions.
Taking a Bath
• Refusal
• Unusual fear
• Crying,
• Screaming
• withdrawal
Nazi ‘doctors and researchers’ conducted horrific experiments with Jews immersed in tubs of water. They included electroshock, freezing and scalding. Many inmates were dipped into tubs of harsh chemicals for cleansing and delousing purposes. Offer options of shower or bed bath where appropriate.Be very respectful of privacy and nudity
Be prepared to offer flexible schedule
Check to see if family member’s presence would help
Do not force the issue.Always identify yourself and explain the reason for your actions.
Fear of Public or Strange Washrooms;
Smell of Urine or Feces
• refusal to use washrooms, incontinence or withholding
• adverse reaction to strong smells
The Jews were transported to concentration camps on cattle cars, with no sanitary conditions, often for days at a time. Many died in transit. Strong smells were everywhere. In the camps there were no washrooms, just makeshift facilities and no privacy. Sanitary conditions in the camps were almost non-existent. The smell of waste may easily trigger the memory of those train rides. Emphasize immediate cleanup post toiletingMaintain deodorized environmentMake washroom as homelike as possible ie. pictures, coloured towels, familiar scents etc.Be respectful of nudity and inability to self-toiletEnsure there are no smells in the corridors and public bathrooms.
Lack of Privacy
• Withdrawal
• Secrecy
Whether in a ghetto, concentration camp or in hiding, there was no privacy for the Jews, and at any given moment, the world as they knew it could be turned inside out. Being forced to be with others could be very frightening. Allow for as much privacy as possible
In shared rooms ensure a designated private space
Accommodate unusual hoarding (ie. change of clothes under pillow)
Small spaces, crowded conditions, lack of personal space
• Anxiety
• Withdrawal
During the war, Jews were either forced into ghettos or concentration camps or survived in hiding. All of these meant cramped, over-crowded and desperate living conditions. In the ghettos, six families were commonly assigned to one small apartment. In the camps, six individuals could be sleeping on the same wooden tiered shelf. In shared rooms ensure a designated personal private space and make the resident aware that you understand and respect their need for privacy
.Respect individual right not to join a group program and allow for individual time with staff and/or solitary time where desired. Establishing trust may encourage individuals to join groups.
Where possible and preferable allow for individual room.
Medical History –taking or Personal Questions
• Refusal to cooperate
• Upset or depression
Routine medical histories can be family mysteries for Survivors. They may not know family medical histories and sadly most relatives died prematurely and violently. Simple questions can raise complex memories. Be empathic and respectful when listening to someone’s story when they offer it to you. Revise standard medical history taking to accommodate lack of information. Have notations on forms to accommodate these changes. Be prepared to listen to Holocaust history when asking historical questions or any reference to family loss.
Requests to do Medical Procedures
• Refusal
• Distrust
• Fear
Many Survivors underwent atrocious experimentation by ‘doctors’ and ‘technicians’ in the name of treatment or research. Many ‘patients’ died in the process, and the Survivors were often left with life-long damage. Explain all treatment options cautiously according to cognitive abilities. Spend time with an individual to ensure understanding. Try to have family or trusted friend support on hand. Where cognitively competent, respect individual right to refuse treatment.
Shaving, Hair Cuts and Personal Grooming
• Refusal or anxiety re hair cuts or shaving
• Extreme anxiety re baldness
For camp inmates and in the ghettos, personal grooming and privacy were next to impossible. Upon arrival at the concentration camps, all men and women had their heads shaved, so that often individuals were unrecognizable. This was a further form of humiliation. Spend time preparing individual and reminding of personal and aesthetic benefits
Allow options regarding hair care, i.e. Preference of time, date, style etc.
Where appropriate, wigs may be a therapeutic response to baldness.
Receiving injections
• Refusal
• Fear
• Anger
Many Survivors were tattooed with numbers for identification. These were done without anesthetic with series of needles. Once tattooed, only numbers identified them. Explain all treatment options thoroughly.
Provide a rationale for the need and distinguish the present from the past.
Normalize the procedure as part of the treatment plan.
Try to have family or trusted friend support on hand.
Wristband Identification
• Removal
• Refusal to wear
Wristbands could be reminders of being depersonalized during the War, known only by number or location. Try to avoid or use only when essential (i.e. wanderer’s bracelet).
Where necessary use design that is as non-institutional and as attractive as possible.
Lining Up for Treatment or Service
• Refusal of treatment
• Anxiety in line
In the camps, Jews lined up for food rations, ‘toilets’, roll call, deportations and even murder. Sometimes they were awakened in the middle of the night and made to stand at attention for hours—until guards felt like releasing them. Military order and lineups were the norm. Avoid requiring individuals having to lineup for programs, services or treatment. Always try to individualize services or treatments.
Harsh, Strong or Unpleasant Smells
• Strong physical or emotional reactions
Sanitation in the camp barracks and in the ghettos consisted of the dumping of harsh antiseptics. People were often placed in lye prior to medical experimentation, and these smells may have horrible associations. Where antiseptic smells are unavoidable, prepare patients ahead of time and explain why it is necessary, (i.e. cleaning, maintenance etc.)
Continue reminding as necessary.
Illness and feeling unwell
• Denial
• Attempts to disguise symptoms
In the concentration camps, the ill and the elderly were immediately sent to the gas chambers. If a person became ill, the safest route would be to keep it secret and remain out of sight. Use a positive and proactive approach to wellness so that change in health status will be recognized promptly. Be aware of changes in health status and any possible attempts to disguise it.
Do not over react to illness, providing as much explanation as possible.
Don’t over react to illness.Try to understand the symptoms and if they have any link t the past.
Where possible discuss positive treatment management.
Secure areas, locks on doors, physical restraints,
Limited access
• Frantic trying to ‘escape’
• Assuming they are trapped
• Panic
Survivors were forced into walled ghettos, barbed wire enclosed concentration camps, barred prisons etc. All personal freedom was removed and any chance of escape was very slim. No escape meant eventual death. Jews in hiding rarely showed their faces in public for fear of exposure. Today, any sense of limited movement of restraint can be very difficult. Where possible avoid locked doors and accommodate wanderers with alternative options. (such as wandering alert bracelets etc)
Where unavoidable, have internal wandering options available giving patients a sense of choice and control of environment.
Avoid use of restraints.
Flashlights
Examining lights or bright lights
• Fear
• Anxiety
• Refusal to cooperate
Camps and ghettos were lit at night by bright searchlights to ensure everyone remained in place. Guards used flashlights to find people in hiding and round them up for deportation. Where possible avoid flashlights on rounds and bright examining lights. Nightlights in patient rooms and corridors are preferable. Strong overhead lighting in exam rooms should be avoided and where necessary should be explained.
Family members or visitors saying goodbye
Staff changes
• Inability to let go
• Depressive reaction
• Withdrawal
Throughout the War, Jews saw their children, parents, other relatives and friends being taken away or murdered in front of them. Most never saw each other again. After the War, Survivors went through series of discoveries as they realized the enormity of the losses. Separation is difficult and can be terrifying. When families leave a unit, staff should be present to provide reassurance, discuss visit and plan next one.
Be cautious of promising ongoing relationships when they are not truly feasible.
Staffing consistency is important
Staff changes should be announced ahead of time with adequate time for farewells.
Foreign languages or heavy accents
• Distrust and fear
Rarely did the guards, soldiers and authorities of the roundups, camps and ghettos speak Yiddish, the first language of most Survivors. A foreign language or a strange accent usually meant trouble. When a patient responds to a foreign accent, first connect on a personal basis. Once this is established spend time explaining where you come from and why you moved. A quality care can overcome these fears.
Loud voices and sounds
• Distrust and fear
The guards and soldiers in the ghettos and camps were never quiet and gentle. Jews were yelled at, shoved and forced in all communications. Maintain a quiet and confident tone of voice.Encourage colleagues not shout back and forth in the halls.
Loudspeakers should be used only for emergencies.
Sounds of others crying or screaming
• Fear or similar reaction
Survivors lived through many different and painful horrors. The sounds of grief and tears are ready reminders. The combination of loud noises, others anguish and the inability to respond may be very upsetting. Spend time with people in pain and try to understand the parameters of their pain. If this is ineffective, try to give people in pain, crying and screaming their privacy. Where appropriate be reassuring to others that the individual is being cared for.
Dogs and other Animals
• Unusual fear
• Revulsion
Dogs were used as guard dogs and attack dogs in rounding up Jews, imprisoning and intimidating them. Dogs were often used to discover hidden Jews. Nazi pets were generally given more and better food than inmates. Be cautious about pet visitations for Survivors on units. Avoid large or noisy animals, but be aware that many people may also benefit from spending time with an animal. Check first.
Group organizing, directing people to line up, or to the left or right
• Refusal
• Moving quickly away
• Fear
Upon arrival at the Concentration Camps, Jews would be “selected”. for life or death, and sent to the left or the right….either directly to the gas chambers or to the slave barracks. These ‘selections’ were often the last time that family members saw each other. Avoid patient/resident lineups for program, services or treatment. They are undignified at any time.
Allow individuals to move according to their own pace.
Routines and schedules
• Non- compliance
• Direct sabotage
The Nazi war-machine was an efficient and orderly attempt to annihilate all Jews. They were known for their efficiency and keeping on schedule. Routines and schedules are unavoidable in institutions. Explain their presence to support resident quality of life and explain carefully to clients. Be prepared to be flexible and accommodate individual need.
Meal Time And Food Presentation
• Refusal to eat
• Overeating
• Hoarding of food
• Chronic unhappiness with food
Withholding of food, designated minimal portions, rough handling, and almost inedible foods were dished out to long lines. Many starved to death. Thus, poor service, (perceived or real) small portions or new foods could be difficult. Meals should arrive as consistently as possible and be as personalized as possible. Where meals are delayed, explanations should be prompt with clear time frames of when food will be available.
Accommodate those residents who feel the need to wrap food up at meals to take back to their rooms.
Not enough food
Hunger pangs
• Food hoarding or hiding
• Eating too fast
Hunger was an ever-present feeling during the war years. Many starved to death. Not feeling hungry and always having left-over food could be very important. Often trading, stealing or hoarding food could be punishable by death, so secrecy is also a factor. Establish an environment that there is always food available and it is ‘safe’ for individuals to request it. There should be clear communication and signs reinforcing this.
Where there is hoarding, this should be accommodated in a manner that is safe for everyone rather than prohibited. (i.e. a fresh roll always on hand in a patient’s room to provide reassurance)
Jewish Holidays
• Anticipatory fear
• Not involved in festivities
During the War, the Nazis often raided Jewish communities, killing and rounding up Jews on Jewish holidays; knowing they would be either at home or in the synagogue. Many Jews were murdered in their synagogues while observing a Jewish holiday. Staff should be aware of the Jewish calendar and upcoming holidays. They should not assume the impact of a particular holiday on a particular individual. Find out how the individual observes a particular holiday and try and accommodate. Understanding and support should be given to individuals as required.
Christian symbols
• Adverse reaction to jewelry, holiday decorations or seasonal music
Christian symbols such as the cross or Christmas decorations were part of the culture of the enemy. These symbols reflected that the camps were not representative or supportive of Jewish people. As such, these symbols today have the potential to trigger a difficult memory. Staff needs to be aware of the sensitivity some people may have to Christian symbols and reactions may vary. Since reactions vary so much, it is impossible to generalize what may be problematic.Where there is an issue, remove the particular symbol until a personal trust is established.
Ambulance or Fire Sirens, alarms, bells, whistles
• Extreme anxiety in an ambulance
• Adverse reactions
Sirens, whistles and bells were often the signals for people to be rounded up and deported. They were also used to define the times in the camps and precede public announcements to prisoners. These are unavoidable sounds. When they occur, staff should be available to reassure patients, explaining what is occurring and why the particular noise is happening.
Night-time or dark rooms
• Extreme fear
The most dangerous time was at night; when in the darkness all type of atrocities could happen. Staff needs to identify which residents are at risk at night. Patients who feel the need should have nightlights or some other illumination available at night.
Nightmares
• Extreme disorientation
In the camps, sleep may not have offered much needed rest, as nightmares about the daytime would intrude. Nightmares about the past may be more vivid today. Be sensitive to Survivors who suffer nightmares. A nightlight may be helpful.
Allowing flexibility with sleep schedules may accommodate fears of nightmares. Give comfort, empathy and a warm drink until the resident is settled.
Reminiscence
• Refusal to discuss relatives or family history
While many Survivors have the need to tell and re-tell their story, others cannot bear to recount their tragic past. Even simple questions regarding family or country of origin may be too difficult to discuss. Learn about individual sensitivities regarding telling their ‘story’. We can never know what we may provoke. Be prepared to listen where that is important and not to pry where the person is uncomfortable. We do not have to know all the details in order to provide sensitive care. Always exert caution and discuss the past only where there is a safe connection established.
Certain recorded or live music
• Anxiety
• Refusal to listen
Concentration camps often had loud speakers and camp personnel might select their favourite music. Those or similar pieces would be reminders of those days. Also, some Yiddish music might bring back reminders the people who sung or played these songs and are now gone. Identify which music triggers negative reactions and avoid.
Be aware both of volume and choice of music.
There is enough choice in both secular and Yiddish selections to support selections that bring pleasure.
Discussion of Financial Matters
• Over reaction to discussion of costs
• Not revealing of financial status
Survivors were robbed of all their assets during the War and had to start over. Many are very cautious about revealing their financial status today and concerned that they always have secured “enough” money, in case someone attempts to rob them again. Also, some people managed to escape Europe before the War if they had enough money or valuables to buy their way out. Be particularly sensitive when making financial enquiries. It may be necessary to involve children or other family to supplement costs if an individual refuses to pay full fee even if he can afford it.
Be prepared to fully explain rationale for costs.
Relocation
• Anxiety, fear of abandonment
Some of these feelings would be normal for all people facing relocation to a hospital or nursing home, but Survivors may have extreme reactions as they recall forced relocation, deportation to camps and never seeing loved ones again. Ensure that as much preparation as possible takes place prior to moving in. i.e. visits, meeting staff, personal effects in room etc.Family members should have free and ready access to the institution and be a valued part of the care team.
Advanced Planning, Making end of life directives
• Refusal to discuss
Many Survivors have been so intent on their survival, that discussing end-of- life directives, funeral preferences, burial sites etc. may be too painful for them. Be particularly sensitive when discussing end of life directives and burial plans. It may be necessary to involve children or other family to participate in the discursion or to make decisions if the individual will not discuss.
Be prepared to fully explain rationale for costs.
Specific Clothing Items
• Fear or similar reaction
A religious icon, a Star of David around an employees neck, high heels that resound on a hard floor or even a certain colour may remind a Survivor of a wartime incident Where possible, remove the piece of clothing or the item until a trusting relationship can be established and the patient is focused on the individual rather than the item.
Consulting or MeetingMedical Personnel
• Fear, anxiety or refusal to cooperate
Medical experimentations, selections by physicians and the indifference of health care providers during the War may explain a Survivor’s generalized mistrust of all medical personnel and procedures New personnel should introduce themselves and take a few minutes to personalize the visit. All examination and treatment procedures should be explained fully in advance, and ceased if the patient becomes too anxious or upset.
Dentist and Oral Pain
• Fear, anxiety
• Refusing to acknowledge pain or accept treatment
In the camps, gold fillings were forcibly removed and teeth were extracted. Subsequently starvation and lack of proper hygiene caused many dental problems. The use of dental “gas” or even the mention of this term by dentists may bring back memories of death by gas. The bright light aimed at the dental chair may also cause adverse reactions. Explain all routines and procedures at least 2X using different language to ensure understanding.Proper oral hygiene should be maintained to ensure as little intrusive care as possible.Use high-speed suction and selected room deodorizers to eliminate odour.
References and Further Reading
Rosenbloom, M. (1983) Holocaust Survivor in Late Life. Paper presented at the annual conference of the North East Gerontological Society held in Newport, R.I. in May, 1983 and is partly based ob the author’s article in Social Casework, April, 1983, “Implications of the Holocaust for Social Work.”
Joffe, H.I., Joffe, C. and Brodaty, H. (1996) Ageing Jewish Holocaust Survivors: anxieties in dealing with health professionals. Medical Journal of Australia, 165, November, 517-520.