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The Jewish Orthodox Caregiving Study – The Untold Story

Support for family caregivers is currently a national public health objective. Recognizing the value of this resource can reduce health care costs and make an overall contribution to improved health and quality of life for our loved ones, the rationale for increased federal funding is that the better the health of caregivers, the longer and more successfully they can remain in their valuable caregiving roles.

In  previous  issues  we  have  discussed the  design  of  the  first  study  of  Ortho- dox Jewish Caregiving (the JOCS) and the  findings  as  presented  to  the  pub- lic  health  community.  A  collaboration among  researchers  at  L’Orech  Yomim/ Center  for  Healthy  Living,  Case West- ern   University,   Columbia   University, and the Morehouse School of Medicine, survey results supported the hypothesis that  burden  among  Orthodox  Jewish caregivers  is  greater  than  the  general population.  The  questionnaire  and  re- port are available on the resource tab at www.lorechyomim.org.

Two aspects of our collaboration here had not been shared:

  • Responses  to  the  open-ended  questions, and
  • A  survey  instrument  designed  to learn Jewish community leadership view on the matter.

MEMBERS OF OUR COMMUNITY SEEK HELP

Listen to the voices of our neighbors:

Caregivers express their concerns in the open-ended question:

- Not only am I concerned about the costs of my mother’s care,  I also feel the pressure of not being able to do my work effectively (which translates into reduced income).

-  Even  our  kosher  nursing home  makes  it  difficult  for  Shomrei Shabbat  relatives  in  walking  distance to  visit  on  Shabbat  (locked  stairwells, alarms, etc.)1

- I am not opposed to sup- port groups or counseling, but given the time pressure I am under, if I wanted to do something for myself I would much prefer  to  exercise.

-  Because  I  am  not available on the Sabbath or holidays in case of emergency the religious issue for me is concern that my aunt will get the care  she  needs  on  those  days,  if  necessary.

-  I  do  the  best  I  can,  but  I  often feel guilty and wish there were more services to help seniors with health problems.

- For me as caregiver, this generation is not prepared.

- For all memorials for Holocaust survivors not adequate and not funneled to the living.

- I have started to feel the physical effects of the stress on my body–both the physical stress of not sleeping etc. and the emotional turmoil and the effects on my own family. I have a difficult time making sure everyone has what they need from me. There are times when I’m so distracted. I have become clumsy, forget- ful and depressed.

And in “aspects of caregiving most difficult for me”:

Resentment of unshared burden • Lack of privacy due to paid help in the home •Day/night confusion (not sleeping between 11 p.m. and 4 a.m.) • Dementia • Dealing with the patient’s emotional up/downs • Trying to help and love my parent who is terminal • Dealing with “sundowning” (strong fear and anxiety and confusion that sets-in at evening) • Emotional drain of seeing my mother debilitation and depression at her deteriorated mental condition • Lack of time for my large family-balancing caring for my grandmother and doing things for my husband and children • Get- ting support from family when needed •  Availability of an advisor when needed • How to feel when father doesn’t want to shower and have to encourage and push for him to do. I end up feeling that I’m not giving my father proper respect when having to take care of his needs • I wish I could convince Aunt Frieda to utilize Jewish communal services in our area • Better time management for myself and my family • Making decisions as far as treatments and medical procedures • Difficult mother in law • Needing to perform tasks which hurt or cause discomfort to my mother • Dealing with constant ill-humor • Worrying • How to deal with with father when he doesn’t want to get up to eat dinner. I’m  not sure where my kibud av comes in: Wake  up or let sleep • Scheduling outside activities • Respecting mother’s independence and assuring her good judgment, especially regarding safety and health.

 

THE LEADERSHIP AND COMMUNITY RESPONSE

In addition to determining what they are, an essential element for addressing these caregiver needs is the attitude and perception of our community leaders. Below is a sample of questions contained in the brief survey instrument we designed to assess their knowledge and sensitivity towards Orthodox Jewish caregiver needs. These include executives at Jewish community centers, providers of care, bikur cholim, as well as hospital chaplains and clergy. If they become aware of the needs they will place them on their agency’s agenda.

Our very preliminary findings suggest that additional efforts in educating community leaders may be helpful. We encourage consumer groups, rabbinical organiztions and community-based organizations to adapt and administer the questionnaire, and give it the full test. It is available at the publication tab, www.lorechyomim. org. The process, we believe, will foster a greater awareness of the caregiver needs as well as the design and delivery of new services.

Through these pages and our cross-national study, disseminating results to public health professionals we have raised awareness to the additional burden of the Orthodox Jewish caregivers.

A fundamental principle in organizational development is that quality leadership impacts on service delivery. Educating community leaders should be a focus. The open-ended survey tool, the JOC Leadership Survey will facilitate the process.

The 1998 US Government report, Informal Caregiving: Compassion in Action observes:

“In our society, informal caregivers often go unnoticed except by those who depend on their care. The recipients of informal caregiving understand how important their caregivers’ efforts are to their personal well-being. We would like the leaders of all segments of society — including policymakers, educators, the clergy

and the media –to acknowledge and celebrate informal caregiving as one of the notable strengths of our Nation’s families and communities.

In the years to come, it will become increasingly important to formulate policies that support and sustain informal caregiving. These policies must  recognize that families and communities cannot always meet the needs of their ill and disabled members by themselves. Moreover, individual caregivers cannot be expected or required to do so much that their own health and well being is placed in jeopardy. A great deal of debate may need to go into determining what are reasonable expectations for informal caregivers and how much is “too much.” In order to accommodate the needs of informal caregivers, society may also need to adjust expectations in other areas of life, such as in the workplace. Some “family-friendly” policies have been put in place, but much more thought and effort needs to be given to developing additional ways of enabling — but also, when necessary, providing relief to — informal caregivers.”

Public programming and funding have since been expanded. The Orthodox Jewish community should not fall behind.

In conclusion, we beg the question. How is the Jewish community faring? Were we to conduct organizational and individual self-assessments, what would we determine? Have we made adequate progress? Is there a service delivery model in place? Is it effective?

It is insufficient and unrealistic to expect family caregivers to seek out help on their own. It is our responsibility, under the moral banner of vahavta leracha komacho, love thy neighbor as thyself, to reach out to them and provide our neighbors, friends, relatives with support. The JOCS and other studies have identified the levels of assistance most needed. The information should be utilized to garner the resources for providing the interventions identified such as transportation, respite, guidance and emotional support.

The genuine voices of Orthodox Jewish caregivers in our community are telling and should be heard.

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This is the third and final installment of this series. Visit us at kolhakavodnews.org for the previous feature articles and lorechyomim.org for a host of additional caregiver resources. 1 Note: Jewish Action Magazine (Summer 2013) re- ports that Woodmere Health and Rehabilitation Center in New York, which serves many Orthodox clients, ap- proached Portal Logics to develop a “kosher door,” an electronic door that would comply with all federal and state safety standards, yet enable its use on Shabbat and Jewish Holidays. It is OU certified and is available for installation by hospitals and nursing homes.

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