caring for the family caregiver: a spiritual journey

17
This article was downloaded by: [Northeastern University] On: 09 October 2014, At: 17:04 Publisher: Routledge Informa Ltd Registered in England and Wales Registered Number: 1072954 Registered office: Mortimer House, 37-41 Mortimer Street, London W1T 3JH, UK Journal of Religion, Spirituality & Aging Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/wrsa20 Caring for the Family Caregiver: A Spiritual Journey Dennis DeMond a a Chaplain Long Term Care Center , Southern Michigan, USA Published 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 PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use of the Content. This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to anyone is expressly forbidden. Terms & Conditions of access and use can be found at http://www.tandfonline.com/page/terms- and-conditions

Upload: dennis

Post on 16-Feb-2017

213 views

Category:

Documents


1 download

TRANSCRIPT

Page 1: Caring for the Family Caregiver: A Spiritual Journey

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

PLEASE SCROLL DOWN FOR ARTICLE

Taylor & Francis makes every effort to ensure the accuracy of all the information (the“Content”) contained in the publications on our platform. However, Taylor & Francis,our agents, and our licensors make no representations or warranties whatsoever as tothe accuracy, completeness, or suitability for any purpose of the Content. Any opinionsand views expressed in this publication are the opinions and views of the authors,and are not the views of or endorsed by Taylor & Francis. The accuracy of the Contentshould not be relied upon and should be independently verified with primary sourcesof information. Taylor and Francis shall not be liable for any losses, actions, claims,proceedings, demands, costs, expenses, damages, and other liabilities whatsoever orhowsoever caused arising directly or indirectly in connection with, in relation to or arisingout of the use of the Content.

This article may be used for research, teaching, and private study purposes. Anysubstantial or systematic reproduction, redistribution, reselling, loan, sub-licensing,systematic supply, or distribution in any form to anyone is expressly forbidden. Terms &Conditions of access and use can be found at http://www.tandfonline.com/page/terms-and-conditions

Page 2: Caring for the Family Caregiver: A Spiritual Journey

Journal of Religion, Spirituality & Aging, 22:120–135, 2010Copyright © Taylor & Francis Group, LLCISSN: 1552-8030 print/1552-8049 onlineDOI: 10.1080/15528030903313920

120

WRSA1552-80301552-8049Journal of Religion, Spirituality & Aging, Vol. 22, No. 1-2, November 2009: pp. 0–0Journal 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, Alzheimer’s 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 one’s 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: [email protected]

Dow

nloa

ded

by [

Nor

thea

ster

n U

nive

rsity

] at

17:

04 0

9 O

ctob

er 2

014

Page 3: Caring for the Family Caregiver: A Spiritual Journey

Caring for the Family Caregiver 121

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

THE NEED

Alzheimer’s 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 one’s Alzheimer’s 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,

Dow

nloa

ded

by [

Nor

thea

ster

n U

nive

rsity

] at

17:

04 0

9 O

ctob

er 2

014

Page 4: Caring for the Family Caregiver: A Spiritual Journey

122 D. DeMond

received a diagnosis of advanced stage Alzheimer’s disease, Parkinson’sdisease, 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 chaplain’s time, expands a chaplain’s 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 Alzheimer’s disease. I findthat in most cases, these individuals have assumed full responsibility for theloved one’s care for many years. As a result, they have experienced numerous

Dow

nloa

ded

by [

Nor

thea

ster

n U

nive

rsity

] at

17:

04 0

9 O

ctob

er 2

014

Page 5: Caring for the Family Caregiver: A Spiritual Journey

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 God’s people.

A support group can assist these individuals as they deal with theirnumerous losses. I have developed support groups for persons providingcare for Alzheimer’s 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 Caregiver’sPastoral 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 Alzheimer’s 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 participant’sphysical demeanor (body language, facial expressions, and level ofpersonal appearance), number of positive and negative interjections intodiscussion. The group’s 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.

Dow

nloa

ded

by [

Nor

thea

ster

n U

nive

rsity

] at

17:

04 0

9 O

ctob

er 2

014

Page 6: Caring for the Family Caregiver: A Spiritual Journey

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 group’s 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 Alzheimer’s 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 Caregiver’s 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 to your caregiving experience:(a) Group

is not designed to voice complaints about either one of the two centers,

Dow

nloa

ded

by [

Nor

thea

ster

n U

nive

rsity

] at

17:

04 0

9 O

ctob

er 2

014

Page 7: Caring for the Family Caregiver: A Spiritual Journey

Caring for the Family Caregiver 125

staff members or another participant. (b) Please share complaints aboutone of the two centers or staff members with the appropriate Administrator,Director of Nursing (DON), Social Work, or Chaplain during routine workinghours. (c) Please be polite while others share their caregiver experiences.

• Share the floor with others: Please share the group time with each other!Listen to their stories and share your story when it is your turn.

These criteria are designed to assist the facilitator in maintaining an ambi-ence of professionalism, encouragement, and safety. Their purpose is toassist and motivate participants in the give-and-take process of sharing andlistening to each other’s stories. This criterion also assists the facilitator inmaintaining control over the benchmarks and outcome of the study.

Stage 4. An ongoing, open-ended support group for all family caregiverswith loved ones residing at the facilities was established. The KISS rulesimplemented in Stage 3 were adopted for participation in this supportgroup.

METHODS AND PROCESS USED

During the first stage of this study, fliers and letters were sent to localchurches, hospitals, and family physicians for advertising and recruiting.The staff was asked to assist with referrals and personally invite caregiversto participate.

In the second stage, participants are asked to spend approximately onehour with the nursing home chaplain. Prior to participation, the caregiversare asked to sign an informed consent form.

The caregiver was asked to share his or her experiences as a familycaregiver. These experiences relate to the closeness of his or her family oforigin, names of organizations that have provided help, some of the spiri-tual issues that he or she may have experienced as the primary caregiver,the support he or she received from her faith community, religious practiceshe or she found most helpful and the type of support that was found mostand least helpful.

During the third stage, the chaplain acted as facilitator and host to thegroup but did not direct the conversations of the caregivers. The chaplainpresented the group agenda, explained group principles and group rules,and facilitated the formation of the group. The agenda and rules enabledthe development of a safe environment for caregivers to share their story.

The group model used in this process is based on the PRAY principle:

• Purpose: To offer a safe place to work out feelings of suffering and unre-solved hurt, fear, and frustration that have been perpetuated by the illnessand care of a loved one.

Dow

nloa

ded

by [

Nor

thea

ster

n U

nive

rsity

] at

17:

04 0

9 O

ctob

er 2

014

Page 8: Caring for the Family Caregiver: A Spiritual Journey

126 D. DeMond

• Resolve: To discuss weekly/daily concerns and frustrations that thepersonal caregiver has as a result of their experience and not of the CareFacility.

• Aim: To find reasonable and realistic means to handle unresolved feelingsof grief and loss caused by the onset and progression of Alzheimer’sdisease and dementia in a loved one and learn spiritual exercises that canbe shared with our loved ones.

• Yield: To an open forum, supportive team, genuine compassion, articu-late facilitator, nonjudgmental presentation, expressing the compassion ofman and God in crisis situations, the validation of feelings, and encour-agement to accept what we cannot change.

Through the use of this paradigm, the chaplain presented the purpose, goal,aim, and process of each group:

The caregiver’s support group consisted of four 90-minute groupsessions. Prior to the start of the each group, a nurse or qualified individualcharted each caregiver’s blood pressure, heart rate, and body temperature.Refreshments were provided along with time for individuals to socializewith other group participants. During the actual discussion portion of eachgroup session, the facilitator charted each interaction between groupmembers using a Clinical Observation Checklist. This checklist assisted inassessing tendencies of group interaction and group cohesion.

At the start of each group, there was a 15-minute administrative period.During this period, the facilitator explained the purpose, rules, process, andcontent of the session. This informed participants of what was expectedduring the group session and set the stage for the remaining time for thegroup.

The second portion lasted approximately 30 minutes. The facilitatorbriefly discussed some of the changes and losses that many caregiversexperience and ways that caregivers typically handle these losses. The facil-itator then asked the participants if any of these dynamics sounded familiarand gave them an opportunity to briefly share their stories. This time is notmeant to be a gripe session about what is or is not happening at the center,but is meant to be a time that is set aside to assist each participant in sharingsome of the personal losses that he or she experienced and ways that he orshe coped with these losses while caring for the loved one.

A period of approximately 15 minutes was set aside to present the spir-itual, physical, and emotional benefits of prayer. At this time, the BLESSprayer (Bryant, 2004) was introduced to the participants. The BLESS prayerprovides a personal and practical way for caregivers to communicate withGod and for God to communicate with them. The BLESS prayer fosters anopportunity to experience a sense of closeness to God, loved ones, otherfamily caregivers and center staff. This prayer model provides a concretemodel from which the spiritual, physical, emotional, and social needs can

Dow

nloa

ded

by [

Nor

thea

ster

n U

nive

rsity

] at

17:

04 0

9 O

ctob

er 2

014

Page 9: Caring for the Family Caregiver: A Spiritual Journey

Caring for the Family Caregiver 127

be placed before God. It furnishes a spiritual activity that the caregiver canshare and practice with his or her loved one. The BLESS prayer:

B – Body. Pray for health/healing, for “daily bread”/physical needs to be met.L – Labors. Pray for God’s help in the person’s work, school, daily tasks.E – Emotional needs. Pray for comfort, reassurance, hope, joy, peace, etc.S – Social needs. Pray for healthy relationships with family, friends, associates.S – Spiritual needs. Pray for continually deepening relationship with God,

neighbor, and self.

Approximately 15 minutes was set aside to give participants an opportunityto practice the BLESS Prayer. During this period, the facilitator introducedeach letter of the prayer and allowed participants to provide short sentenceprayers to express the needs found in this letter. The final 15 minutes wereused to allow participants to share what they learned from the group, whatwas most helpful, and what could have been present that would have beenmore helpful.

After each session, a nurse charted each caregiver’s blood pressure,heart rate, and body temperature. Refreshments were available to provideparticipants with a time of fellowship informal group formation.

After the completion of the four group sessions, each participant wasasked to meet with the facilitator to discuss and evaluate his or her perceptionof the effectiveness of involvement in the study. The following issues werediscussed and used as criterion for evaluation:

1. Review the Alzheimer’s disease caregiver’s pastoral care assessment.2. Review and discuss lessons learned though participating in this

project, and3. Discuss follow-up pastoral care, continuation of the support group, referral

or discontinuation of pastoral care services.

The fourth stage of this study consisted of the development of anopen, on-going support group. This was accomplished through postingfliers, sending invitations via centers’ newsletters, and briefing each familycounsel of the purpose, day, time, and place of the two support groups.

FINDINGS AND EVALUATION OF THE PROJECT

Table 1 provides a summary of the age and gender of caregivers andloved ones, the duration of caregiving, and loved ones’ medicalcondition.

Overall, there were no marked changes in the reading of the vital statisticsfrom the beginning to the end of the initial sessions.

Dow

nloa

ded

by [

Nor

thea

ster

n U

nive

rsity

] at

17:

04 0

9 O

ctob

er 2

014

Page 10: Caring for the Family Caregiver: A Spiritual Journey

128 D. DeMond

Blood Pressure

For 15 of the 20 participants the two blood pressure readings (systolic ordiastolic) either changed in opposite directions (for example, systolicincreased while diastolic decreased) or one of the two readings did notchange at all. Only one participant showed a slight increase in both systolicand diastolic pressures. Three participants showed decreases in bothsystolic and diastolic blood pressure from the beginning to the end of theinitial session. Although not likely to represent a physiologically importantchange, these decreases do suggest that these individual caregivers mayhave experienced some benefit in this initial stage.

Heart Rate

Most participants experienced a small decrease in heart rate from thebeginning to the end of the initial interview. One participant experienced alarge increase in heart rate, a change that is not explained by any specificobservation or circumstance of the meeting.

When asked to provide a number between 1 and 10 (1 being the leastand 10 being the greatest) that best rated their emotional and spiritual pain,the caregivers described their individual pain as shown in Table 2.

TABLE 1 Demographic Information for Participating Caregivers and Their Loved Ones(N = 24)

Age Average (years) Median (years) Range (years)

Of Caregiver 59.2 59.5 20–86Of Loved One 76.9 78.5 49–92

Duration of caregiving Average (years) Median (years) Range (years)

3.58 3.0 0.5–10

Diagnosis Alzheimer’s disease Parkinson’s disease Dementia Other*

5 2 3 14

Gender Female Male

Of Caregiver 17 7Of Loved One 13 11

*Other diagnoses reported by caregivers included cancer (1), neck surgery and paralysis (1), vascular peripheral disease (1), heart attack and stroke (2), stomach and heart problems (1), stroke with dementia (4), heart attack with a little dementia (1), AD with Parkinson’s disease and dementia (1), triple bypass surgery and broken hip (1), and vegetative state (1). In one instance (stomach and heart problems), the loved one’s chart listed a diagnosis of AD, but the caregiver said that he did not accept this diagnosis.

Dow

nloa

ded

by [

Nor

thea

ster

n U

nive

rsity

] at

17:

04 0

9 O

ctob

er 2

014

Page 11: Caring for the Family Caregiver: A Spiritual Journey

Caring for the Family Caregiver 129

Severe Pain was defined as pain so severe that the caregiver could notconcentrate on caring for the loved one. Although no participants ratedtheir pain as severe, several said there was time that their pain felt that way,but only through crisis experiences.

When asked to state the word that best describes their spiritual and emo-tional pain, the caregivers developed the list presented in the Table 3.

TABLE 2 Emotional and Spiritual Pain of Caregivers (N = 24)

Ratings Number Comments

No pain (1) 1 This caregiver denied spiritual or emotionalpain, but expressed frequent episodes ofanger and resentment toward family for nothelping with caregiving responsibilities.

Moderate Pain (2-4) 15 One caregiver reported that she only experienceda level of 2, because it was an honor for herto care for her husband; however, she hasbeen hospitalized with stomach and lowerbowel issues

Constant Pain (5) 4Chronic, Debilitating Pain (6–8) 4Severe Pain (9–10) 0

TABLE 3 Caregivers’ Words Describing Spiritual & Emotional Pain

Descriptor, Qualifier No. of responses

Descriptor, Qualifier No. ofresponses

Abandoned, by family and close friends

1 Helplessness 7

Acceptance, of disease and reality of death

2 Hope:, when she was admitted to LTC and about the future because he was a Christian

2

Agony 1 Hopelessness 2Angry, a little bit 1 Injustice 1Anxious about the future 1 Loneliness 2Challenged 1 Mourning, General 1Concern 2 Numbness 1Despair 2 Overwhelmed 1Discouraged 1 Powerlessness 3Empathy, because she was a Christian 1 Sad 4Fear, of everything 1 Sorrow 2Frustrated 4 Stress 1Grief 1 Uncertainty, not sure of what

to do and if what I was doing was done right

1

Guilt, for not being able to do enough to provide the necessary care and for being angry so much

2 Upset 2

Happy that I could help 1 Very worried 1Heart pain 1 Weakness 1

Dow

nloa

ded

by [

Nor

thea

ster

n U

nive

rsity

] at

17:

04 0

9 O

ctob

er 2

014

Page 12: Caring for the Family Caregiver: A Spiritual Journey

130 D. DeMond

From this broad representation of theological diversity (shown in Table 4),all of the 24 caregivers who were interviewed reported that they found reli-gious/spiritual influences and practices helpful in their caregiving journey.When asked, “Did you find religious/spiritual influences and practices(prayer, faith, etc.) helpful while serving as a caregiver?”,23 caregiversresponded “Yes” and one caregiver responded with “Sort of.”

Table 5 presents the list of spiritual and religious influences and prac-tices that were most frequently used.

Stage 3: Group Sessions

At the conclusion of the second stage, seven caregivers were invited toparticipate in the third stage of the group study.

Table 6 provides a summary of the age and gender of these seven sup-port group members and their loved ones. Table 7 presents theologicaldemographics of care group participants. The duration of caregiving, andloved ones’ medical condition are presented as well.

During the third stage, the facilitator hosted the group and providedthe rules and agenda for the group. The facilitator did not direct the conver-sations of the caregivers. For instance, the chaplain presented the groupagenda and rules to assist in drawing the group members together and toprovide enough structure to assist in developing a safe environment forcaregivers to share their story.

At the start of each group session, the Serenity Prayer was led by thechaplain to encourage a more spiritual and emotional atmosphere. This devo-tional time was intended to inspire unity and trust amongst the group. Thistime was followed by a 15-minute administrative period. This time was usedto set parameters to clarify the group expectation and answer questions.

The second portion of the group lasted 30 minutes. The facilitatorbriefly discussed some of the changes and losses that many caregivers

TABLE 4 Theological Demographics of ParticipatingCaregivers (N =24)

Religious Preference No. of Caregivers

Christian 20Congregationalist 3

Lutheran 3Methodist 4Baptist 6Presbyterian 1Mormon 1Nazarene 2Jewish 1Hindu 1

No Religious Preference 2

Dow

nloa

ded

by [

Nor

thea

ster

n U

nive

rsity

] at

17:

04 0

9 O

ctob

er 2

014

Page 13: Caring for the Family Caregiver: A Spiritual Journey

Caring for the Family Caregiver 131

reported they experienced and ways that these caregivers typicallyhandled losses. The facilitator then asked the participants if any of thesedynamics sounded familiar and gave them an opportunity to briefly sharehis or her story.

A Clinical Observation Checklist was developed to assist in thecharting and assessment of individual tendencies during group interac-tions. This checklist was monitored and completed by the facilitatingchaplain during the 30-minute discussion portion of the group. Only the

TABLE 5 Most Frequently Used Spiritual and Religious Influences and Practices

Influence or Practice Number Comments

Prayer: Pastoral, personal, & other (Lord’s Prayer and Serenity Prayer)

23 One person reported that she said the Lord’s Prayer as a mantra to remind her that God was there to help.

Music (sacred) – Listening and singing

16

Scripture reading 12 Bible study with others—2 caregivers; Bible on tape—1 caregiver.

Faith: God, Jesus, church, and others

11

Worship 9Marriage relationship - Covenant

relationship4

Family relationships: Brothers, sisters, and children

3

Daily Devotional: Our Daily Bread and Upper Room

3

Men’s Group for church 2 Helped with maintaining the house and car, watched loved one while spouse went shopping, exercise group; One said their men’s group planted, watered, and cared for a garden for them annually.

Being able to serve their loved one 2Laughter 2 “Not that my husband’s disease was funny,

but focusing on the absurdity of our situation helped me to deal with the pain.”

Communion Lord’s Supper 1Hope 1 That God was working in the couple’s livesReading autobiographies of the

great saints1

Enjoying life 1 The individual reported that spouse would soon be gone if individual didn’t enjoy each day that when spouse died, individual’s life would be over too. Individual said that this view is what made the death of spouse endurable.

Accepting death as a part of the cycle of life

1

Sewing 1 Assisted individual in focusing on losses and used as an avenue to recreate something new out of the griefD

ownl

oade

d by

[N

orth

east

ern

Uni

vers

ity]

at 1

7:04

09

Oct

ober

201

4

Page 14: Caring for the Family Caregiver: A Spiritual Journey

132 D. DeMond

interactions that occurred during the group discussion portion of thesupport group were recorded. Entries were not meant to report the exactnumber of interactions between group members, because frequentlyindividuals would interact several times in one encounter. Entries weremeant to simply reveal general tendencies by individuals during groupdiscussion. At the start of each session, the chaplain told the participantsthat the checklist was not meant to be a verbatim, but simply a tool toshow communicational tendencies of group members between groupmember’s interactions. The following individual tendencies weremonitored:

1. total number group interactions;2. number of positive interactions;3. number of negative interactions;

TABLE 6 Demographic Information for Participating Support Group Members and TheirLoved Ones (N = 7)

Age Average (years) Median (years) Range (years)

Of Caregiver 59.86 65 38–74Of Loved One 76.71 77 58–91

Duration of Caregiving Average (years) Median (years) Range (years)

4.3 3.0 1–10

Diagnosis Alzheimer’s disease Parkinson’s disease Dementia Other*

2 N/A 3 2

Gender Female Male

Of Caregiver 6 1Of Loved One 1 6

Other diagnoses reported by caregivers included neck surgery and paralysis (1), heart attack, stroke and dementia (1).

TABLE 7 Theological Demographics of ParticipatingSupport Group Caregivers (N = 7)

Religious Preference No. of Caregivers

Christian 6Congregationalist 3Methodist 1Baptist 1Nazarene 1

No Religious Preference 1

Dow

nloa

ded

by [

Nor

thea

ster

n U

nive

rsity

] at

17:

04 0

9 O

ctob

er 2

014

Page 15: Caring for the Family Caregiver: A Spiritual Journey

Caring for the Family Caregiver 133

4. number and type of facial expressions;5. body language (open and closed);6. language (verbal expression) to include animated, lethargic, confrontive,

and supportive; and7. homework.

Group cohesion was quickly established as evidenced by the followingcriteria:

1. Members began making telephone calls in between sessions to encourageeach other.

2. Members sent greeting cards to encourage each other.3. Some members car pooled to meetings with each other.4. Most members came to meetings early and stayed late to encourage each

other.

Following the 30-minute discussion period, a period of 15 minutes was setaside to present the spiritual, physical, and emotional benefits of prayer. Atthis time, the BLESS prayer was used for the participants. .Fifteen minuteswere set aside to give participants an opportunity to practice the BLESSPrayer. In the final review, it was found that the participants looked formore time to express silently their needs and concerns.

The final 15 minutes were used to allow participants an opportunity toshare what they had learned during the session. Group and individualsurveys were utilized as a method to gain insight and modification in meetingthe needs of both the group and individual caregivers.

After the completion of the four group sessions, each participant wasasked to meet with the facilitator to discuss and evaluate his or her perceptionof the effectiveness of involvement in the study.

Stage 4: Ongoing Support Group

The fourth stage of this study consisted of the development of an open,ongoing support group at the two nursing care centers where I work. Thiswas accomplished through posting fliers, sending invitations via centers’newsletters, and briefing each family counsel of the purpose, day, time andplace of the two support groups.

One of the participants expressed that this experience reminded her of the“Incomparable Deity” as found in Isaiah 41:10. Price (1966, p. 172) writes:

The persistent emphasis upon the personal pronoun I is calculated tosignify the Divine Presence. God promises to uphold His servant withthe right hand of my righteousness (10), “with my victorious righthand” (Heb.). I will strengthen thee—equip you for conflict; I will

Dow

nloa

ded

by [

Nor

thea

ster

n U

nive

rsity

] at

17:

04 0

9 O

ctob

er 2

014

Page 16: Caring for the Family Caregiver: A Spiritual Journey

134 D. DeMond

help thee—in the actual strain of the conflict; I will uphold thee—sustainyou to the point of actual victory.

CONCLUSION

This group process validated the theological perspective of God’s infinitecare, love, and grace. This model is consistent with a pastoral care programfound within the parish, hospital, nursing home, or other care facilities. Thismodel is viable in assisting hurting people wherever they may be found. Itcrosses doctrinal themes, racial, gender, and cultural distinctions. The signif-icance of this model is that it is all inclusive for the support of caregivers atvarious stages of their caregiving journey.

The chaplain who hosts this type of ministry takes on a unique role. Heor she must be knowledgeable of and open to the reality that highlymotivated individuals will find positive solutions, therefore the chaplain’sinput may be as simple as facilitating the meeting. This chaplain found thatmembers of this group, as caregivers, had an innate quality withinthemselves to help others to succeed and to find hope in their own healingand renewal.

The descriptive data and participant feedback found within this studywere encouraging and are applicable to other pastoral care providers whominister to family caregivers. However, due to the size of the population,length of study, and limitations found within this context of ministry, thischaplain recommends that further studies be conducted.

A chaplain must never underestimate the opportunity for healingand renewal arising within the pastoral care relationship. This pastoralcare study reveals that, as God’s representatives, chaplains can and doprovide the necessary environment in which caregivers can meettogether to share and encourage each other in their caregiving journey.In this study, descriptive data was obtained, charted, evaluated, andpresented to show how a caregiver support group is an effective ministry ina nursing home setting. As the Baby Boomer generation ages, this chaplainbelieves that there will be an even greater need for this type of ministrywithin institutional care.

REFERENCES

Anderson, H. (1990). Pastoral care and counseling. In Rodney J. Hunter, NewtonMalony, Liston O. Mills, & John Patton (Eds.), Dictionary of pastoral care andcounseling. Nashville, TN: Abingdon Press.

Bryant, S. (Ed.) (2004). The privilege of prayer. In The Upper Room: Daily devo-tional guide (p. 36). Nashville, TN: Upper Room Press.

Dow

nloa

ded

by [

Nor

thea

ster

n U

nive

rsity

] at

17:

04 0

9 O

ctob

er 2

014

Page 17: Caring for the Family Caregiver: A Spiritual Journey

Caring for the Family Caregiver 135

Hansen, H. (1990). Support groups. In R. J. Hunter, N. Malony, L. O. Mills, & J. Patton(Eds.), Dictionary of pastoral care and counseling (p. 1243). Nashville, TN:Abingdon Press, 1990.

Lustbader, W. & Hooyman, N. R. (1994). Taking care of aging family members: Apractical guide. New York: The Free Press.

Price, R. (1966). The incomparable deity. In Beacon Bible commentary. Vol. IV (p. 172).Kansas City, MO: Beacon Hill Press.

Seeber, J. J. (1995). Congregational models. In M. A. Kimble, S. H. McFadden, J. W.Ellor, & J. J. Seeber (Eds.), Aging, spirituality, and religion: A handbook (253–269).Minneapolis, MN: Fortress Press.

Dow

nloa

ded

by [

Nor

thea

ster

n U

nive

rsity

] at

17:

04 0

9 O

ctob

er 2

014