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KEITH A. ANDERSON AND NOELLE L. FIELDS The Ohio State University LYNN A. DOBB Central Ohio Area Agency on Aging Caregiving and Early Life Trauma: Exploring the Experiences of Family Caregivers to Aging Holocaust Survivors For older adults who have experienced early life trauma, the aging process can be particularly challenging as resources, abilities, and envi- ronments change. Although researchers have documented these challenges well, few studies have examined the experiences of family care- givers to older adults who have endured early life trauma. In this qualitative study, the researchers interviewed 17 family caregivers to Holocaust survivors. Content analysis revealed themes typ- ical of caregiving, including stress, filial piety, and guilt; however, these themes appeared to be amplified by the early life trauma endured by the older adults. Caregivers were also reluctant to seek assistance, as they compared their own stress with the incomparable stress endured by the Holocaust survivors. The findings provide an understanding of the specific challenges faced by family caregivers to older adults who have experienced early life trauma and hold impor- tant implications for health care professionals who work with these groups. College of Social Work, The Ohio State University, 1947 College Road, Columbus, OH 43210-1162 ([email protected]). Education and Training Manager, Central Ohio Area Agency on Aging, 174 East Long Street, Columbus, OH 43215. Key Words: caregiving, early life trauma, family caregivers, Holocaust survivors. Family caregivers play a critical role in the welfare of older adults, yet as a result of assuming this role they are vulnerable to a number of deleterious outcomes in terms of their own psychological and physiological health (Pinquart & Sorensen, 2003; Vitaliano, Zhang, & Scanlon, 2003). Although often overlooked, family caregivers can also find great satisfaction and ‘‘gain’’ from their experiences (Balducci et al., 2008; Hilgeman, Allen, DeCoster, & Burgio, 2007). A number of factors can affect caregiving experiences, such as personal and environmental characteristics (e.g., age of care recipient, living arrangements), objective factors (e.g., illness, dementia, level of assistance required), and subjective factors (e.g., feelings of role overload and role captivity; Aneshensel, Pearlin, Mullan, Zarit, & Whitlatch, 1995). From a life course perspective, the early life experiences of care recipients can also shape needs and behaviors in later life, which, in turn, can affect the experiences of family caregivers (Elder, Johnson, & Crosnoe, 2006). In the current study, we used a qualitative lens to explore the experiences of family caregivers to older adults who endured early life trauma, in this case the Holocaust. Although there is a considerable body of knowledge on aging Holocaust survivors, far less is known about the challenges faced by family members who provide care to this group. The findings from this study provide valuable insight into the intersection of trauma, aging, and caregiving and should aide in the development 366 Family Relations 62 (April 2013): 366 – 377 DOI:10.1111/fare.12000

Caregiving and Early Life Trauma: Exploring the Experiences of Family Caregivers to Aging Holocaust Survivors

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Page 1: Caregiving and Early Life Trauma: Exploring the Experiences of Family Caregivers to Aging Holocaust Survivors

KEITH A. ANDERSON AND NOELLE L. FIELDS The Ohio State University

LYNN A. DOBB Central Ohio Area Agency on Aging∗

Caregiving and Early Life Trauma: Exploring the

Experiences of Family Caregivers to Aging

Holocaust Survivors

For older adults who have experienced early lifetrauma, the aging process can be particularlychallenging as resources, abilities, and envi-ronments change. Although researchers havedocumented these challenges well, few studieshave examined the experiences of family care-givers to older adults who have endured early lifetrauma. In this qualitative study, the researchersinterviewed 17 family caregivers to Holocaustsurvivors. Content analysis revealed themes typ-ical of caregiving, including stress, filial piety,and guilt; however, these themes appeared to beamplified by the early life trauma endured bythe older adults. Caregivers were also reluctantto seek assistance, as they compared their ownstress with the incomparable stress endured bythe Holocaust survivors. The findings provide anunderstanding of the specific challenges facedby family caregivers to older adults who haveexperienced early life trauma and hold impor-tant implications for health care professionalswho work with these groups.

College of Social Work, The Ohio State University, 1947College Road, Columbus, OH 43210-1162([email protected]).∗Education and Training Manager, Central Ohio AreaAgency on Aging, 174 East Long Street, Columbus, OH43215.Key Words: caregiving, early life trauma, familycaregivers, Holocaust survivors.

Family caregivers play a critical role in thewelfare of older adults, yet as a result ofassuming this role they are vulnerable to anumber of deleterious outcomes in terms oftheir own psychological and physiological health(Pinquart & Sorensen, 2003; Vitaliano, Zhang,& Scanlon, 2003). Although often overlooked,family caregivers can also find great satisfactionand ‘‘gain’’ from their experiences (Balducciet al., 2008; Hilgeman, Allen, DeCoster, &Burgio, 2007). A number of factors can affectcaregiving experiences, such as personal andenvironmental characteristics (e.g., age of carerecipient, living arrangements), objective factors(e.g., illness, dementia, level of assistancerequired), and subjective factors (e.g., feelingsof role overload and role captivity; Aneshensel,Pearlin, Mullan, Zarit, & Whitlatch, 1995).From a life course perspective, the early lifeexperiences of care recipients can also shapeneeds and behaviors in later life, which, in turn,can affect the experiences of family caregivers(Elder, Johnson, & Crosnoe, 2006). In the currentstudy, we used a qualitative lens to explore theexperiences of family caregivers to older adultswho endured early life trauma, in this case theHolocaust. Although there is a considerable bodyof knowledge on aging Holocaust survivors, farless is known about the challenges faced byfamily members who provide care to this group.The findings from this study provide valuableinsight into the intersection of trauma, aging, andcaregiving and should aide in the development

366 Family Relations 62 (April 2013): 366 – 377DOI:10.1111/fare.12000

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of proactive steps for health care professionalswho work with families that have experiencedearly life trauma.

Background

Trauma can take many forms, and the effectsof trauma can be manifested in a number ofphysical, emotional, and social ways acrossindividuals’ lives. Extreme trauma, the focusof this study, can be defined as ‘‘direct per-sonal experience of an event that involves actualor threatened death or serious injury or thethreat to the physical integrity of another per-son’’ (American Psychiatric Association, 1994,p. 424). Examples of extreme trauma can includeexposure to genocide, military combat, personalassault, incarceration, and torture. The sequelaeof experiencing extreme trauma can appear asacute responses, such as horror and helplessness,as well as chronic and delayed-onset reactions,such as persistent anxiety, hypervigilance, socialisolation, and somatic disorders (American Psy-chiatric Association, 1994). For those who haveexperienced extreme trauma early in life, there isevidence that they may become more vulnerableto maladies of health, well-being, and function-ing later in life (e.g., Davison et al., 2006).

In terms of trauma research, Holocaustsurvivors have been the focus of a large body ofresearch and, along with combat veterans, helpto inform much of what we know about trauma.As Holocaust survivors have aged, researchershave begun to understand the lasting effects ofearly life trauma. Recent studies have foundthat survivors tend to have elevated levels ofnegative affect, depression, posttraumatic stressdisorder (PTSD), psychological distress, use ofpsychiatric medications, and, in some cases,suicidal ideation and suicide (Barak et al., 2005;Ben-Zur & Zimmerman, 2005; Brodaty, Joffe,Luscombe, & Thompson, 2004; Kahana, Harel,& Kahana, 2005; Labinsky, Blair, & Yehuda,2006; Stessman et al., 2008; Trappler, Cohen,& Tulloo, 2007). Studies have also found thatHolocaust survivors tend to report diminishedphysical health, higher morbidity, and lowerfunctional status (Ayalon & Covinsky, 2007;Collins, Burazeri, Gofin, & Kark, 2004; Kahanaet al., 2005; Stessman et al., 2008). On a morepositive note, Holocaust survivors have alsodeveloped and displayed remarkable resilience.Surviving the Holocaust has been linked tostronger social support networks, more effective

coping mechanisms, and healthier and moreresilient philosophies for living (Greene, 2010;Kahana et al., 2005; Shmotkin, Shrira, Goldberg,& Palgi, 2011).

Past research also suggests that early lifetrauma can have collateral effects on family rela-tionships and subsequent generations. Again, wecan look at the Holocaust as an example of thisphenomenon. In this case, bonds between sur-vivors and their children have been found to beunique, in terms of both their strength and qual-ity. Because of the trauma and losses suffered bysurvivors, there appears to be a tendency for sur-vivors to be highly involved with and protectiveof their children and to have exceedingly highexpectations (Wardi, 1992; Williams-Keeler,McCarrey, Baranowsky, Young, & Johnson-Douglas, 1998). Children of survivors, in turn,have been found to have unusually high levelsof interconnectedness with their parents, emo-tional dependency on their families, and greaterdifficulty in separation and individuation in rela-tionships (Berger, 2003; Brom, Kfir, & Dasberg,2001; Mazor & Tai, 1996). Whereas some stud-ies have found that family members of survivorstend to experience elevated levels of distress,most notably PTSD, others have found that thereis insufficient evidence to support this notion ofsecondary traumatization (for a meta-analysis,see van IJzendoorn, Bakersmans-Kranenburg,& Sagi-Schwartz, 2003). Finally, there is evi-dence to suggest that survivors have also passedon positive traits to their offspring, includingresilience, adaptability, and effective copingskills (Shmotkin, Shrira, Goldberg, et al., 2011).

As Holocaust survivors continue to age,family members are being called upon toassume caregiving roles. Evidence from the fieldsuggests that Holocaust survivors do indeedpresent special needs as they move into thecare recipient role (David, 2002; Rosenfield,2001). The practice literature outlines a numberof possible triggers or events that can causeemotional reactions and exacerbate symptomsof PTSD in survivors (David & Pelly, 2003).For example, assisting an aging survivor withshowering may trigger memories of the gaschambers in concentration camps, resultingin anxiety, fear, and refusal of care. Otherseemingly benign activities or environments,such as using public restrooms or waiting in line,may again trigger memories of the conditionsendured during the Holocaust. More threateningactivities, such as invasive medical procedures

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or relocation to a nursing home, may evokeeven stronger reactions. Problematic emotionaland behavioral responses to care activities andenvironments may be further complicated by thepresence of cognitive limitations and dementia.In addition, the high degree of cohesionin survivors’ families may affect caregiving,particularly in those dyads that are enmeshed(i.e., overly close or overly dependent on eachother; Mazor & Tai, 1996). It is importantto note, however, that the coping skills,resilience, and adaptability of survivors and theiroffspring may offset caregiver stress and allowcaregivers to experience significant emotionalgains (Shmotkin, Shrira, Goldberg, et al., 2011).

Unfortunately, there is dearth of empiricalresearch on caregiving to older adults who haveexperienced early life trauma. To fill this gap inthe literature, the following specific aims weredeveloped for the present study:

1. To gain an in-depth understanding of thelived experiences of family caregivers toolder adults who have experienced early lifetrauma

2. To the explore whether and how caregivingfor aging trauma survivors might be differen-tiated from ‘‘typical’’ caregiving situations.

This study is both timely and important. Theyoungest of Holocaust survivors are in their70s and the number of survivors is rapidlydeclining. It is critical to learn as much aspossible from their experiences and from theexperiences of family members who are activelyengaged in caregiving. The findings from thisstudy will provide essential data about the needsof caregivers to aging trauma survivors and theservices that can help to support this group.The use of exploratory qualitative methods isalso a critical strength to this study because solittle is known about caregiving for older adultswho have experienced early life trauma. Finally,the findings from this study may be applicableto other groups of aging trauma survivors andtheir families (e.g., aging combat veterans) andemerging groups, such as aging survivors ofother genocides.

METHOD

Theoretical Framework

The life course perspective was used as a guidingtheoretical framework in the design of this study

and in the interpretation of the results. Thisperspective looks at development over timeand sheds light on behavior by incorporatingelements of time, the environment, and theperson. Factors to consider when trying tounderstand a person or family’s experiences,such as that of a family caregiver, wouldinclude historical and life events, life course,family history, culture, community interaction,and biopsychosocial functioning (Elder et al.,2006). For families, the life course perspectivecan be particularly useful, as their lives arelinked on so many levels. Applied to thecurrent study, we propose that life events (e.g.,the Holocaust), family history (e.g., lifelonginfluence of the Holocaust), culture, and thechanging biopsychosocial resources and needsof the care recipients and family caregivershelp to shape the experiences of caregivers.The life course perspective also indicatesthat the ramifications and trajectories of thisearly life trauma can resonate throughout thelives of future generations. This perspective iscommonly used to understand the long-termeffects of the Holocaust and other early lifetrauma on individuals and their families (Berg,2010; Levy & Sidel, 2009).

Sample

Before this study was conducted, the protocolwas reviewed and approved by the universityinstitutional review board. In this study, familycaregivers were defined as family members whoprovide assistance with personal care, trans-portation, emotional and psychological support,financial management, and care management inboth community and institutional settings (e.g.,nursing homes, assisted living facilities). Holo-caust survivors were defined in this study asJewish people who were displaced, persecuted,or discriminated against by the Nazis and theirallies between 1933 and 1945 (United JewishCommunities, 2003). Holocaust survivors wereselected for several reasons, including theircurrent age, the age at the time that theyexperienced the trauma, and the researchers’ability to identify and access this group. Samplerecruitment was conducted through severalchannels. Family caregivers were contacted viamail through their affiliation with Jewish FamilyServices in three Midwestern cities. Potentialparticipants were also recruited through post-ings in Jewish community newspapers and

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newsletters. Participants were interviewed inchronological order as the researchers receivedcommunication about their interest in the study.On the basis of the diminishing variability inthe themes of the incoming data, the researchersdiscontinued the recruitment and data collectionprocesses following the 17th interview. Thefinal sample consisted of 17 family caregiversto Holocaust survivors.

The family caregivers in this study werepredominantly middle-aged (M = 56.4 yearsold, SD = 9.1, range = 43 – 85) female (70.6%),married (70.6%), well-educated (88.2% collegegraduates), adult children or children-in-lawof survivors (88.2%). The caregivers reportedhaving spent an average of 9 years in thecaregiving role (M = 9.0, SD = 6.8, range =2 – 25). The majority of caregivers did not livewith the care recipients (82.4%). Care recipients(Holocaust survivors) were predominantly intheir late 80s (M = 88.4 years old, SD = 5.2,range = 77 – 102), widowed (76.5%), women(58.8%) who either lived alone (35.3%) or livedin long-term care facilities (35.3% assisted livingfacility or nursing home). Caregivers reportedthat most care recipients required ‘‘little’’ to‘‘some’’ assistance with activities of daily living(ADLs; e.g., assistance with bathing, dressing,and toileting) and instrumental activities of dailyliving (IADLs; e.g., assistance with shopping,cooking, transportation). Over half of the carerecipients were reported to have moderate to highlevels of memory impairment (52.9%). In termsof their experiences during the Holocaust, carerecipients had been exposed to the Holocaust foran average of over 6 years (M = 6.2 years, SD= 3.8, range = 1 – 15). Almost half of the carerecipients had survived in concentration camps(47.1%), whereas the other half survived inprison labor camps (23.5%), in hiding (17.7%),or in the ghettos (6%).

Data Collection and Analysis

A phenomenological approach was taken inthis study as the intent was to understandparticipants’ perception of their roles andexperiences as caregivers. This approachallows researchers to understand the ‘‘livedexperiences’’ of individuals (Creswell, 2012).Data were collected from September 2010to January 2011. Two trained graduate-levelresearchers conducted telephone interviews

using a semistructured interview protocol. In theprotocol, participants were asked about the fol-lowing: (a) experiences in assisting with ADLsand IADLs and (b) reactions to care recipients’behavior related to early life trauma (e.g., flash-backs, difficulties with environmental stimuli).It should be noted that although a researchprotocol was used to guide the interviews, theresearchers intentionally avoided the impositionof preconceived assumptions, a key componentwithin the phenomenological approach. Duringthe interviews, the researchers engaged in activeinterviewing, a process through which theparticipant and interviewer reflectively discussand examine experiences and thoughts. Thismethod of data collection was selected to yielda rich description of the experiences of familycaregivers (Creswell, 2012).

A multistep content analysis was conductedto document and interpret the data. First,audiorecordings of the interviews were tran-scribed verbatim by the researchers and down-loaded into ATLAS.ti version 6.0 software. Tworesearchers then independently read the tran-scribed interviews. The researchers convened toestablish a preliminary coding framework basedon an existing understanding of caregiving andboth the stress and growth often associated withthis role. The data were coded independentlyby the two researchers using this establishedcoding framework. Open or free coding was alsoused for emerging themes that did not fit withinthe established framework. Multiple coding wasused with data that were illustrative of more thanone theme. The researchers then reconvened tocompare coding outcomes. Interrater reliability(or intercoder agreement) was established bycomparing the coding of the two researchers ona random selection of seven interviews (approx-imately 40% of the data). The level of agreementwas 69.7%, which indicates an adequate level ofinterrater reliability. Disagreements between theresearchers typically centered on whether singleor multiple coding should be used. In thosecases, the data in question were reviewed againby both researchers and disagreements werereconciled (Green & Thorogood, 2009). Demo-graphic data and information were also collectedregarding level of memory impairment in carerecipients and level of assistance needed withADLs (e.g., assistance with bathing, dressing,and toileting; Katz, Ford, Moskowitz, Jackson,& Jaffe, 1963) and IADLs (e.g., assistance with

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shopping, cooking, transportation; Lawton &Brody, 1969).

RESULTS

Content analysis revealed three primary themes:caregiver stress and burden, filial piety, andcaregiver guilt. Although interrelated, thesethree themes appeared to be distinct within thedata. Within each of these themes, the datawere subcategorized as either ‘‘general’’ or‘‘trauma-specific’’ to help illustrate experiencesthat characterize caregiving for older adults whohave experienced early life trauma. In additionto these three primary themes, one emerging orsecondary theme was found to exist in the data:the lifelong presence of the Holocaust in thelives of the family caregivers.

Caregiver Stress and Burden

General stress and burden. Reflective of thenature of caregiving for older adults, participantsreported that their experiences in interactingand assisting the care recipients was oftenchallenging and resulted in increased levelsof stress and burden. The following statementillustrates general caregiving stress, focusingon the temporal demands that caregivers oftenmention as a stressor:

Well I think it’s been, it’s taken a toll on my life,all of the caregiving, and just having other respon-sibilities, working, and family and, you know,in-laws and children; you know, it’s just been very,very stressful for me and I feel like now it’s sortof taken its health toll on me. (daughter, age 53)

Trauma-specific stress and burden. The follow-ing statements illustrate how early life traumaexperienced by older adults can complicate com-mon caregiving tasks and amplify caregiverstress and burden. As previously mentioned,caregivers (both family and professional) oftenface challenges in providing assistance and careto Holocaust survivors, as these activities trig-ger memories of past trauma. Past experiencesof trauma and the interaction with aging and,in some cases, cognitive impairment can alsoresult in emotional reactions, such as anger andparanoia. These emotional reactions can furtherincrease the stress of caregivers in interactingwith care recipients.

Something will trigger something from their pastand then they may not even know who you are.They’ll think that you’re somebody else. . . . Theytook (a friend’s mother) to take a shower and shefreaked out, she thought that they were taking herto the gas chambers. (daughter, age 50)

A lot of elderly people who have been Holocaustsurvivors, their short-term memory is not intact,but they still remember a lot of things, sosometimes when she’s very agitated and an aidecomes to try to help her get dressed she fights toothand nail and that’s not her. (daughter, age 55)

The last thing they ever wanted to talk abouttheir experiences—you know, they wanted to hideit from us. The story I tell is my mom has atattoo—her number from Auschwitz, she used totell us that it was our phone number. . . . Now mymom wants us to know how pissed off she is andhow pissed off she was. (son, age 57)

I think that they’re very cautious and paranoid andalways wondering, you know, what you have upyour sleeve, and that’s understandable, you know,from going through the Holocaust. So they’re veryparanoid. (son, age 52)

Filial Piety

General filial piety. Caregivers also reportedhigh levels of dedication to the care recipientsand a sense of obligation to spend time andprovide care for these older adults. Althoughthe terms are related, dedication appears tohave positive overtones and obligation negativeovertones. The concept of filial piety, the driveto care for one’s parents, captures both thededication and obligation experienced by familycaregivers. Filial piety can be a positive moti-vating force for caregivers as well as an elementthat contributes to feeling of role captivity andburden (Sung, 1998). This is demonstrated inthe following statement by a caregiver:

I wouldn’t be here (in Cleveland) if it wasn’t thatmy mother was still alive. I’m not complaining, Ihave a good life. . . . I just know that I would’veprobably made other choices had I not felt anobligation. (daughter, age 62)

Trauma-specific filial piety. As illustrated in thefollowing statements, some caregivers appearedto have an elevated sense of dedication and

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obligation due to the past trauma endured by thecare recipients. These feeling were expressed inthe drive to protect and continually monitor carerecipients, in some cases in a parental fashion.

The parent having been a survivor, when theysuffer, it’s really difficult because you sort offigure haven’t they done this enough in their life,haven’t they had enough difficulty. I also thinkthat there’s an element of the child of a Survivoralways you know feeling the obligation to takecare of a wounded parent. (daughter, age 55)

I have friends who have mothers but they are notsurvivors, and they are very different. Like if theysee their mother once a week it’s fine. And I’m like,you got to be kidding, once a week? I mean, I woulddie, I couldn’t live with myself. (daughter, age 50)

I think there’s always an element of protection,of protecting them from more pain, because itwasn’t just going through the Holocaust andlosing their families, everyone, their parents,their grandparents, their aunts, uncles, siblings.(daughter, age 55)

Well, one of the things that I’ve read is thatchildren of Holocaust Survivors tend to take onmore of a parental role with their parent thangrown children of non-Holocaust Survivors. And,sometimes I think that’s kind of true. (son, age 57)

Caregiver Guilt

General caregiver guilt. Closely related to ded-ication and obligation, caregivers also expresseda sense of guilt about not doing enough fortheir family members. This is not uncommon incaregiving (Brodaty, 2007), yet the trauma of theHolocaust appears to have amplified this senseof guilt. The following passage is reflective ofthe general guilt that family caregivers can haveand the toll that this guilt can have on their lives:

Whenever I leave I feel depressed, I feel guilty, Ifeel sad that I’m leaving her, you know, I just feelvery torn in so many directions. . . . Sometimesat the end of the day I just feel like I’m finished.And of course there’s never any time for myself,. . . but it would nice once in a while to not feelguilty, because any free time I have, I come here.(daughter, age 50)

Trauma-specific caregiver guilt. As illustratedin the next four statements, the guilt of some

caregivers appears to be multiplied or amplifiedby the trauma that care recipients had endured.Caregivers appeared to feel that they had littleroom to complain about their burden given thepast experiences of the care recipients and feltguilty in doing so.

It was a guilt feeling on my part that I felt that Ineeded to do for them just because of what theyboth had gone through. . . . When we were kidsthat if we did something wrong or there was aproblem either my mother or my father would say‘‘I survived Hitler for this?’’ (daughter, age 53)

I feel a lot of guilt because, you know, given whatmy mother went through, and so I feel like it’s notfair to just abandon her . . . guilt, I guess, to do asmuch as possible for the parents. (daughter, age 46)

I mean there was a big sense of, I don’t know ifI’d call it guilt, but that we kind of owed thembecause their lives were so difficult and because ofwhat they went through that as their children wedon’t want to make their lives more difficult. Wewould never, even growing up, we would neverwant to add to their, you know, unhappiness.(daughter, age 62)

Lifelong Presence of the Holocaust

Participants also reported a lifelong presenceand influence of the Holocaust in their lives.The sample consisted predominantly of childrenof survivors, and the Holocaust seems to haveplayed and continues to play a lasting role in theirlives, in some cases having a detrimental effectin others serving as a motivation. Although thefollowing statements are brief, they capture thefact that the Holocaust is a part of the caregivers’lives as well as the care recipients.

Posttraumatic stress syndrome, so I know thatit exists, because my whole life when I wasyounger, I was a teenager and an older teenager,my father used to have nightmares, really often.Screaming, you know and it was well, I grew upsaying, ‘‘Mommy, wake Daddy up tell him notto scream, the Nazis aren’t coming’’ ’cause that’swhat he would dream about, being chased. And soI can’t help if in my life I sometimes have thosedreams now or my kids have those dreams now.(daughter, age 55)

I mean it impacts generations really. I thinkeverybody was very motivated to succeed, it felt

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like we had to succeed for someone who didn’thave that opportunity and was killed. . . . Almostall of us were named after relatives that were killedin the Holocaust. (niece, age 43)

Well, I’ve been around survivors my whole life.I’ve never known any different. (daughter, age 62)

DISCUSSION

The findings from this study provide a number ofinteresting and informative jumping off pointsfor discussion. Prior to discussing each of thethemes found in this study, it is first helpful toreturn to the theoretical underpinnings of thisstudy. The life course perspective was used toguide this line of research, and it is evident thatthe Holocaust continues to play an influentialand reverberating role. Not unexpectedly, familycaregivers reported that the behaviors of theaging survivors at times reflected the experiencesthat they had during the Holocaust. Thesebehaviors, in turn, affected the experiences thatcaregivers had in interacting with the survivors.Caregivers also reported a lifelong presence ofthe Holocaust. For the children of survivors, theHolocaust influenced the manner in which theywere raised, the past and current behaviors oftheir parents, and their understanding of theirroles and expectations as caregivers. Again, thisis reflective of the life course perspective inwhich past events and family history are thoughtto influence the lives of current and futuregenerations (Elder et al., 2006). Interestingly,some studies have suggested that the trauma ofthe Holocaust can extend beyond the secondgeneration and that the indelible imprint of thisevent may continue to be felt for generationsto come, further expanding the range of the lifecourse perspective (e.g., Scharf & Mayseless,2011; Shmotkin, Shrira, Goldberg, et al., 2011).

The life course perspective is also evidentwhen we examine the specific themes foundwithin the data. In terms of caregiver stress,the findings highlight a number of similaritiesand differences between general caregiving andtrauma-specific caregiving and again demon-strate the lasting effect of early life trauma.Consistent with the research of family care-giving, study participants experienced caregiverstressors related to assistance with activitiesof daily living; providing supervision to carerecipients; and the balance of family, work,

and caregiving responsibilities. Caregivers alsoreported feelings of being overwhelmed withthe pressure to support aging parents in additionto adequately taking care of their own house-hold and work duties. The early life traumaexperienced by Holocaust survivors, however,seemed to amplify caregiver stress and bur-den for family members in this study. Forexample, participants reported that caregivingtasks were complicated when care provisiontriggered memories of past trauma for the Holo-caust survivor. Traumatic life events such asthose experienced by survivors of concentra-tion camps triggered negative reactions duringcaregiving tasks (e.g., bathing, undressing) andheightened the physical and emotional strain ofsome family members. Similar to the researchof David and Pelly (2003), family caregivers inthis study also reported trauma-specific caregiv-ing challenges such as care recipients’ symptomsof PTSD or chronic reactions such as persistentanxiety or hypervigilance or both (AmericanPsychiatric Association, 1994).

Another important finding was the signif-icance of filial piety and its influence on theexperience of caregiving for older adults whohave experienced early life trauma. Consistentwith much of the literature on family members ofHolocaust survivors, our study findings revealedthat family caregivers felt an obligation to ensurethat their parents were well cared for in old age.Literature further suggests that respect for olderadults plays a central role in Jewish tradition,especially as it relates to caring for, protecting,and supporting one’s parents (Friedman, 2008;Kestenbaum, 2009). In some instances, familycaregivers felt that they might have madeother life choices if not for feelings of parentalobligation, such as needing to live in close geo-graphical proximity to the care recipient. Filialpiety also manifested positively for some familymembers who reframed caregiving responsibili-ties as a ‘‘gift’’ rather than a ‘‘stressor’’ becauseof their feelings of affection and respect for theiraging parents. Feelings of obligation were com-pounded with concern for ‘‘protecting’’ an agingparent who had experienced the horrors of theHolocaust and who had ultimately survived inspite of tremendous human suffering. Moreover,family caregivers seemed to grapple with want-ing to shield survivors from any further pain inlate life associated with normal age-related lossand change (Fridman, Bakermans-Kranenburg,Sagi-Schwartz, & van IJzendoorn, 2011).

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Alongside feelings of dedication and obliga-tion, study findings suggest that family membersalso experienced an elevated sense of guilt abouttheir role as caregivers. Although caregiver guiltis well documented in the literature (e.g., Losada,Marquez-Gonzalez, Penacoba, & Romero-Moreno, 2010), the effects of the trauma of Holo-caust on care recipients appeared to intensify theguilt of family members. Caregivers reported asense of guilt around ‘‘complaining’’ about care-giving tasks because of the horrific trauma thatsurvivors had endured early in life. Attributedto this sense of guilt was the perception byfamily members that any complaint about care-giving tasks would be incomparable to the severetrauma experienced by the care recipient duringthe Holocaust. Family members expressed aninherent need to ‘‘do as much as possible’’ fortheir parents because of their past suffering.

In looking at the way that these themes inter-twine, the feelings of guilt and filial obligationexpressed by family caregivers toward agingsurvivors seems to have created a ‘‘Who amI to complain?’’ response to caregiver burden.This appears to lead to a reluctance to admitnegative feelings about caregiving tasks and adisinclination to recognize the strain of caregiv-ing in comparison to the trauma endured by thesurvivors. By failing to recognize and acknowl-edge the strain and burden of caregiving, thisgroup may be less likely to seek assistance fromother individuals and other resources of care(e.g., home health services, adult day health).Caregiver burnout could become a problem forthis group, negatively impacting the well-beingof caregivers and the care provided to the olderadults. It should be noted that reluctance toseek help is often seen in caregiving in general(Casado, van Vulpen, & Davis, 2011); however,the past suffering of Holocaust survivors seemsto make caregivers especially hesitant. From aclinical and practice standpoint, this reluctanceto acknowledge burden and seek assistanceis particularly interesting. This creates apotentially problematic situation for health careprofessionals serving families of survivors, asneeds may not be expressed and, therefore, mayremain unmet. A proactive and anticipatoryapproach to working with families of Holocaustsurvivors may be the most prudent and effectivestance for health care professionals. This hasbeen supported by the practice literature onworking with Holocaust survivors and their

families, particularly in long-term care settingssuch as nursing homes (David, 2002).

It is important to locate the findings fromthis study within the vast body of literature oncaregiving and also within the literature on care-giving in the Jewish community. The findingsfrom this study suggest that caregiving for olderadults who have survived early life trauma isboth similar to and different from caregivingin general. We suggest that caregiving forsurvivors of early life trauma, in this case theHolocaust, can be elevated due to perceptionsof family members (e.g., knowing the sufferingthat survivors have endured) and the lastinginfluence of the trauma on current behavior(e.g., resistance to care). In terms of the latter ofthese elements, caregiving to survivors of earlylife trauma may be comparable to caregivingto individuals with dementia. The challenges ofproviding care to individuals with dementia havebeen well documented, particularly the stressand burden induced by behavior problems andresistance to care (e.g., Etters, Goodall, & Har-rison, 2008). Such challenges have been foundto be a primary contributor to caregiver burnoutand eventual nursing home placement for carerecipients (Gaugler, Duval, Anderson, & Kane,2007). Given the mean age of care recipients inthe current study (88.4), the high prevalence ofdementia in this age group (approaching 45%by some estimates; Alzheimer’s Association,2012), and the level of memory problemsreported (52.9% moderate to high), the care-givers in this study may be faced with evengreater challenges than dementia caregivers ingeneral. With dementia, short-term memory isoften compromised whereas long-term memorycan stay somewhat intact. Survivors of early lifetrauma with late-life dementia may experiencerecurring memories of lives during the periodof trauma, essentially reliving their worst daysevery day (Shmotkin, Shrira, & Palgi, 2011). Aswe have seen in this study, this could make eventhe most routine activities (e.g., personal care,bathing) incredibly difficult for care recipientsand especially troubling for family caregivers.Although additional research is needed, theintersection of dementia and early life traumaappears to present challenges for caregiversabove and beyond those endured by caregiversto family members with dementia only.

Culture should also be recognized as a factorthat may have influenced the experiences andreactions of family caregivers in this study. The

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study focused on survivors of the Holocaust, andmost, if not all, of the care recipients and familycaregivers were Jewish. As both a religion and anethnicity in the United States, the perception ofcaregiving in the Jewish community is shapedby scripture, tradition, and culture (Friedman,2008). The high levels of filial piety that wereobserved in the current study may be partiallyreflective of the religious notion of honoringone’s mother and father as well as the culturalexpectations to care for one’s parents. Guilt wasalso reported by family caregivers in this studyand appeared to be related to obligations to careand the reluctance to complain about the burdensof providing care. Some have argued that Jewishcaregivers have a particularly strong tradition ofproviding care and that complaining about theseresponsibilities and relinquishing care to otherscan induce feelings of guilt (Kestenbaum, 2009).The findings from the current study add to ourunderstanding of caregiving within the Jewishcommunity and highlight the importance of thisrole with Holocaust survivors, a revered groupwith the community.

Limitations

There are several limitations that should be con-sidered in interpreting and applying the resultsfrom this study. First, the purposive samplingmethods used in this study may have introducedsome bias. Temporal strain and feelings ofbeing overwhelmed are commonly reportedproblems for family caregivers, particularly for‘‘sandwich’’ caregivers who may be workingwhile caring for both children and aging parents(Rubin & White-Means, 2009). Qualitativeinterviews tend to be time-consuming, andcaregivers with little time may have elected todecline participation in this study. As such, thisstudy may not have captured the experiences ofthose caregivers who are experiencing the high-est levels of stress and strain. The researchersalso relied on telephone interviews rather thanin-person interviews. Again, time was a concernfrom the caregivers’ standpoint; however, thisapproach did not allow the researchers toobserve the participants and to capture infor-mation about their affective states during theinterviews. Given that this is a qualitative study,it was also not possible to determine whether thelevels of caregiver burden, stress, guilt, and filialpiety differ quantitatively between caregivers toHolocaust survivors and caregivers in general.

It is possible, however, to state that these care-givers expressed strong feelings regarding theinfluence of the Holocaust on their caregivingexperiences. Additional quantitative researchwould be useful in further differentiating theexperiences of family caregivers to aging traumasurvivors.

Practical Implications

For health care professionals (e.g., nurses,physicians, social workers, counselors, andtherapists), the findings from the current studyprovide insight into what might be observed inclinical settings and what might be anticipated inworking with families with a history of early lifetrauma. Rarely do gerontological and geriatrichealth care professionals work with individualsin a social vacuum; rather they tend to work withfamily units, and an approach that embraces asystems perspective is critical in understandingand working with these families. As part of afamily system that has endured severe trauma,family caregivers experience the stressors andchallenges of interacting and caring for agingsurvivors, as well as the residual effects of‘‘living with the trauma.’’

David and Pelly (2003) provided an excellentresource on understanding the specific chal-lenges faced by aging Holocaust survivors, theirfamily caregivers, and health care profession-als. Although this work focuses specificallyon Holocaust survivors, the clinical directionsshould be applicable to other groups of olderadults who have experienced early life traumaand their family caregivers. The authors sug-gest that practitioners should be competent inthe following areas when working with familiesimpacted by early life trauma: (a) understandingthe effects of early life trauma for older adultsand the potential re-emergence of trauma laterin life, (b) assessing for the presence of PTSDand other trauma-related maladies, (c) recogniz-ing triggers and situations that can retraumatizesurvivors, (d) realizing that family caregivers toaging survivors of early life trauma may fail toreport or underreport their stress and burden, and(e) reaching out to these family systems to offerassistance and provide appropriate and effectiveinterventions and support.

For health care professionals in long-termcare institutions (e.g., assisted living facilities,nursing homes), these suggestions may have par-ticular resonance. For example, understanding

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the ramifications of moving a Holocaust survivorinto long-term care is particularly importantgiven the triggers associated with communalsettings for survivors and the elevated levelsof guilt and stress that might be anticipated infamily caregivers (Anderson, Fields, & Dobb,2011). Although nursing home placementis typically difficult for all families, familycaregivers to Holocaust survivors may feel likethey are abandoning the survivor and feel bothpersonal and cultural guilt in doing so. Davidand Cohen (2003) suggested that practitionerstake a comprehensive systems approach duringplacement consisting of the following actions:(a) supporting the survivor using environmental(e.g., arranging their room, controlling noise)and clinical approaches (e.g., active listening,reminiscing when appropriate); (b) supportingthe family through education and counseling(e.g., addressing the guilt associated with place-ment); (c) educating and supporting the staff,particularly in facilities where understanding ofJewish culture is not well established; and (d)creating and supporting the community withinthe facility (e.g., establishing a safe, supportive,understanding, and culturally sensitive environ-ment). Local Jewish Family Service agenciesare valuable resources for training and supportand can play a key role in helping facilitiesbecome better equipped to serve this population.

Whereas the Holocaust stands as a singular,horrific event, the findings from the currentstudy may also have applications to other familysystems impacted by past early life trauma.Researchers have found parallels with othergroups of older adults who have experiencedgenocide, such as aging survivors of theCambodian genocide of the 1970s. This grouphas been found to have similar symptoms oflate-onset PTSD, and their caregivers appearto face challenges that are not unlike thoseof caregivers to Holocaust survivors (Teshuva,2010). In looking beyond survivors of genocide,caregiving to aging combat veterans may alsohold some parallels to the findings in thecurrent study. As with Holocaust survivors,aging combat veterans tend to have elevatedlevels of PTSD and are also viewed as culturalicons or heroes (Wilmoth & London, 2011). Thismay increase the stress and burden of providingcare to veterans while at the same time increasethe sense of filial piety in caregivers. One couldspeculate that caregivers to veterans may bereluctant to ask for help and may feel elevated

levels of guilt if and when the veterans are placedinto long-term care settings. Although cautionshould certainly be used in comparing theexperiences of caregivers to Holocaust survivorswith other groups, the current study may providesome nascent understanding of the challengesassociated with caring for survivors of otherearly life traumas.

Conclusion

As this study of family caregivers to Holocaustsurvivors has found, echoes of early life traumacan continue to reverberate through the livesof older adults, affecting their well-being andthe experiences of their family caregivers. Thiscan create a complex kaleidoscope of emotionsfor family caregivers, including feelings ofobligation, honor, and duty concurrent withfeelings of stress, burden, and guilt. Suchemotions are not unlike those reported by familycaregivers in general; however, these feelingsseem to be amplified because of the earlylife trauma endured by the older adults. Theexperiences of family caregivers can also becomplicated by the re-emergence of trauma andsymptoms of late-onset PTSD. Working withfamily systems impacted by early life traumacalls for health care professionals to be aware ofthe influence that these past experiences can havein the lives of older adults and their caregivers,to gain competencies with specific populations,and to anticipate and address issues that mightarise across the caregiving career.

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