Caring for the Family Caregiver: A Spiritual Journey

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  • This article was downloaded by: [Northeastern University]On: 09 October 2014, At: 17:04Publisher: RoutledgeInforma Ltd Registered in England and Wales Registered Number: 1072954 Registeredoffice: Mortimer House, 37-41 Mortimer Street, London W1T 3JH, UK

    Journal of Religion, Spirituality & AgingPublication details, including instructions for authors andsubscription information:http://www.tandfonline.com/loi/wrsa20

    Caring for the Family Caregiver: ASpiritual JourneyDennis DeMond aa Chaplain Long Term Care Center , Southern Michigan, USAPublished online: 31 Dec 2009.

    To cite this article: Dennis DeMond (2009) Caring for the Family Caregiver: A Spiritual Journey,Journal of Religion, Spirituality & Aging, 22:1-2, 120-135

    To link to this article: http://dx.doi.org/10.1080/15528030903313920

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  • Journal of Religion, Spirituality & Aging, 22:120135, 2010Copyright Taylor & Francis Group, LLCISSN: 1552-8030 print/1552-8049 onlineDOI: 10.1080/15528030903313920

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    WRSA1552-80301552-8049Journal of Religion, Spirituality & Aging, Vol. 22, No. 1-2, November 2009: pp. 00Journal of Religion, Spirituality & Aging

    Caring for the Family Caregiver: A Spiritual Journey

    Caring for the Family CaregiverD. DeMond

    DENNIS DeMONDChaplain Long Term Care Center, Southern Michigan, USA

    Family caregivers are sometimes overlooked by programs thatprovide care for persons suffering from dementia. Family careproviders experience a significant amount of physical andemotional stress. In addition, they often suffer spiritual stress aswell. The need for spiritual support services is presented in thischapter. Guidelines for the development of support groups for familycaregivers are presented as well.

    KEYWORDS Dementia, Alzheimers disease, ministry model, clini-cal observation, support groups

    INTRODUCTION

    Discussions about the spiritual formation of older persons often neglect thefact that the care of the frail elderly involves a significant number of familymembers who are themselves older persons. We refer to these providers ofhelp and support as caregivers. There are a number of settings where car-egivers are engaged in caring for a dependent frail older person 24/7. Pro-viding for ones friend or loved one at home is only part of the picture.

    A large percentage of those who need around-the-clock care are inextended care facilities such as nursing homes and hospitals. For some, thisrelieves the burden of care for the family, but for most it is simply a trans-ferring the stress from in-home care to ensuring that the facility is providingappropriate care.

    The continuing drain of both physical and spiritual energy of thefamily caregiver is of concern for this article. Although many debilitatingdiseases motivate families to place loved ones in nursing homes, in this

    Address correspondence to Dennis DeMond, 1226 Tamarack Trail, Charlotte, MI 48813,USA. E-mail: DennisD@Cablespeed.com

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  • Caring for the Family Caregiver 121

    article we focus on the victims of Alzheimers disease. The model wepropose may be useful for dealing with caregivers of victims of otherdisabilities as well.

    THE NEED

    Alzheimers disease adversely affects everyone. It diminishes the heart,mind, spirit, and soul of the victim, the care providers, and the communityin which each lives, worships, and works. This disease slowly robs individualsof reason, memory, bodily functions, personality, orientation, finances, andeventually life itself. Those who provide care for the victims become victimsthemselves and struggle to maintain their identity, relationships, employment,spiritual, social, and financial equilibrium. In many cases, the communityloses the resources of a faithful citizen and in the later stages of the disease,revenues to support institutionalization.

    A variety of avenues are available to support the needs of individuals,families and communities who are adversely affected by this disease. Seeber(1995) writes that historically the church is instructed to provide publicworship, pastoral care, Christian education, fellowship, and social ministryto those in need. For those who are able to participate, these servicesprovide guidance, strength, encouragement, support, instruction, and inspi-ration. As their loved ones Alzheimers disease progresses, many caregiversreport that they find it impossible to participate in traditional services.Furthermore, they frequently report that it is difficult to find the spiritualresources necessary to meet their needs through traditional public services.Ministry with this population suggests that a specialized approach to pastoralcare be developed.

    Many caregivers report that their sacrifices seem unending. Theyquickly come to the end of their spiritual, emotional, and physicalresources. In most cases, other family members have left the caregiver tofight the battle alone. What was once an attitude of hope, courage, andstrength, quickly becomes a reservoir of loss, sadness, anger, isolation, fear,emptiness, despair, and grief. These individuals suffer with incomplete griefwork, exhaustion, loneliness, frustration, anxiety, guilt, shame, and despair.They frequently suffer in seclusion.

    At the residential care facilities where I am chaplain, approximately30% of residents are admitted for a period of up to 100 days for physicalrehabilitation. The majority of these individuals are admitted due to injuryfrom falls, accidents, hip and knee replacements, and strokes. These indi-viduals usually have a discharge care plan that assists them in returning totheir home, the home of a loved one, or an assisted-living center. The other70% residents are considered long term. They may have been admitted toone of the centers due to an inability to progress through rehabilitation,

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  • 122 D. DeMond

    received a diagnosis of advanced stage Alzheimers disease, Parkinsonsdisease, multiple sclerosis, or cancer, to name but a few.

    During the initial pastoral care assessment I have access to eachresident and his or her family, follow-up visits, quarterly care confer-ences, weekly religious services, staff referrals, social activities, familycouncil meetings, drop-in visits, and personal requests for a chaplain tovisit. I serve as a member of the multidisciplinary team and frequentlyserve as an advocate for residents and their families to members of thecare team.

    The majority of my ministry consists of offering spiritual and emotionalsupport with residents, family members, and staff. I am available to supportindividuals with formal religious services, formal and informal pastoral carevisits that may consist of prayer, communion, scripture readings, and sacredmusic. I occasionally conduct baptismal services, weddings, and I amfrequently called upon to officiate at funerals and memorial services. Idevelop and supervise two weekly Protestant worship preaching schedulesby area pastors and monitor and update a Catholic Mass, Rosary, andCommunion list at one of the centers.

    MODEL FOR MINISTRY

    Anderson (Anderson, 1990) writes that ministry with family membersrequires a variety of pastoral skills. These skills can be categorized as informaland formal pastoral care interventions. A majority of contact between thechaplain and the family caregiver will be informal. When a chaplain meetsprivately with an individual, family, or group, the visit becomes formal. Inthese visits, a chaplain may provide formal pastoral counseling, Christianeducation, Scripture reading, prayer, and in extreme situations, referral to amore qualified professional.

    Ministry with a large number of residents and family members whohave experienced similar difficulties might include a mode of pastoral carecalled support groups. Hansen (1990) writes that it is important to statethat a support group is not a therapy group; however, a support group doesprovide a variety of avenues from which therapeutic interventions can bemade. A support group provides the opportunity to support a larger popu-lation, economizes a chaplains time, expands a chaplains outreach within aspecific population and assists individuals in the development of relation-ships with individuals who are experiencing or have experienced similardifficulties and suffered related losses.

    These dynamics are especially true while supporting family memberswho have cared for a loved one diagnosed with Alzheimers disease. I findthat in most cases, these individuals have assumed full responsibility for theloved ones care for many years. As a result, they have experienced numerous

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  • Caring for the Family Caregiver 123

    losses and have been unable to come to any resolution regarding theselosses. Many of them report that they feel alone, isolated, and abandonedby family, friends, church, God, and Gods people.

    A support group can assist these individuals as they deal with theirnumerous losses. I have developed support groups for persons providingcare for Alzheimers disease patients in our care facilities. This ministryconsists of four stages:

    1. The first stage consists of recruiting volunteers.2. In the second stage, individuals who have cared for a seriously ill or

    injured loved one in their own home are asked to participate in a confi-dential pastoral care interview, sign an informed consent form, and havetheir blood pressure, heart rate, and temperature taken and charted.

    3. They are then asked to provide verbal answers to a 24-question CaregiversPastoral Care Assessment.

    4. The final portion of this interview consists of recording and charting vitalstatistics.

    Five participants are selected for each support group. The five groupparticipants are experienced family caregivers who (1) have served as theprimary caregiver for a family member who has received the diagnosis ofdementia of the Alzheimers type (AD); (2) have a loved one who hasresided at this nursing care center; and (3) choose to participate in a preses-sion, group session, and postsession interview. Other support staff partici-pates in this stage of the ministry.

    Persons choose to participate in these groups by responding to a personalinvitation, letter, or flier announcing the formation of groups. Individualsmay also choose to participate at the personal invitation of their familyphysician, Nursing Center Social Work, and/or Activity Departments.

    These groups are monitored according to the following:

    1. Participants: The facilitator measures their emotional status prior, during,and after group meetings through the vital statistics, questions, andpersonal interview.

    2. Clinical observation: The facilitator measures the individual participantsphysical demeanor (body language, facial expressions, and level ofpersonal appearance), number of positive and negative interjections intodiscussion. The groups physical demeanor (cohesiveness and interac-tions with one another) is also measured through the use of a ClinicalObservation Check list.

    3. Subjective individual observation: The facilitator asks the participants todo a handwritten pretest and posttest of how they felt emotionally andhow they perceived that they were feeling at the conclusion of eachstage of this study.

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  • 124 D. DeMond

    4. Subjective group observation: The facilitator asks the group to complete ateam questionnaire to evaluate their perception of the effectiveness of themeeting.

    5. Periodic review of the groups effectiveness: The facilitator designates aspecified time for the meeting and how many weeks the groups willmeet between each review.

    This support group ministry project was first implemented and tested at thecare center where I serve as chaplain.

    SCOPE AND LIMITATIONS OF THE PROJECT

    Although the entire family is affected by Alzheimers disease, this projectdeals specifically with the caregiver. Lustbader and Hooyman (1994) sug-gest that most family caregivers are female. The majority of caregivers aredaughters, wives, daughters-in-laws, nieces, and significant others who havesacrificed time, energy, money, and family to care for their loved one. Inmany cases, they have cared for their loved one by themselves for manyyears. More recent statistics suggest that an increasing number of men areinvolved in directly caring for a parent, spouse, or other family member.

    GOALS AND EXPECTATIONS OF THE PROJECT

    Stage 1. Twenty family caregivers who were willing to participate inthe Caregivers Pastoral Care Assessment were recruited who also agreed toparticipate, if selected, in the four 90-minute group sessions.

    Stage 2. Twenty family caregivers were interviewed: (1) A pastoralrelationship was established through administering an informed consentand Caregivers Pastoral Care Assessment; (2) the caregivers level ofemotional and spiritual pain was charted; (3) a list of words caregivers useto describe their emotional and spiritual suffering was compiled; and (4) alist of spiritual and religious practices that these caregivers most frequentlyused was developed.

    Stage 3. Five persons were randomly selected from the Stage 2 partici-pants who participated in four 90-minute group sessions. Criterion forparticipating in Stage 3 is simply stated in an acronym, KISS.

    Keep everything that is said in the group confidential. Is a closed group during the duration of the initial four sessions in this

    study. Say only the things that pertain t...

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