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Keeping Hope and
the Spirit Alive in
Sharing the Care
ADRC Healthy Communities Summit
Atlanta GA June 18, 2015
Marty Richards, MSW, LICSW
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Goal
Examine how
religious/spiritual
concerns and belief
systems influence how
carers provide care
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Goal
Explore how a
“spiritual” perspective
can be integrated into
work with care partners
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Goal
Offer practical
strategies for assisting
families to build on
strengths and resilience
to keep hope
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Some Assumptions
All families are unique systems.
Family members and family systems can change.
Families have strengths as well as concerns.
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More Assumptions Persons may be at different places along the family developmental cycle.
What is effective for one generation may not work for another.
Carers can build on resiliency and reciprocity.
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More Assumptions
Each family has unique religious and or spiritual perspectives.
Concerns around meaning and purpose loom large.
All in the family need to maintain hope.
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Each family develops
unique imperatives
about who should care
and how care should
be provided within its
own system.
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Perspectives on Caring
Derive from societal, religious and cultural values.
Influence roles played by various family members.
Rules about caring are derived from spiritual/religious precepts.
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Issues of spiritual/religious
significance for families Family definitions can be based on religious principles.
Loss and grief loom large.
Independence/dependence/ interdependence questions have spiritual underpinnings.
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Religious/Spiritual Issues
for Families
Beliefs about “respecting elders” and “honoring parents” derive from religious teaching.
Carers feel guilt about what they “ought” to do based on religious/spiritual beliefs.
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Spiritual Themes in
Caring
Independency and reciprocity
Lessons of what the “frail” teach the “strong”
Coping with loss and grief
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Spiritual Themes
“Personhood” of care partners
Obligation and entitlement between generations
Self-care dilemmas
Making sense of suffering
Hope
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A CareSharing
Approach Person receiving care +
Person giving care=
CARE PARTNERS
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CareSharing
Is key to person-centered provision of assistance
Includes the person giving and the person giving care as care partners.
Builds on strengths
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CareSharing
Is based in the resiliency of the family unit
Is not negated by physical or mental changes
Affirms worth, respect and dignity of all
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Hope is a crucial part
of CareSharing.
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Attributes of Hope
Hope is a transcendent process.
Hope is a rational thought process.
Hope is a relational process.
Hope is a spiritual process. Farran et. al. (1995)
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Hope as a Rational
Thought Process G Goals
R Resources
A Action
C Control
T Time Farran et. al. (1995)
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“Hope Changes”
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Keeping Hope Alive
Hope is found in little and big things.
Be mindful that hope must be reasonable and realistic.
Remember “cor,” the Latin root for heart, is the center of encourage and courage!
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Keeping Hope Alive
Remind carers of what cared for PERSON still CAN do.
Give permission for carers to practice self-care.
Walk “side by side” and “shoulder to shoulder” with care partners.
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“Hope is like a road in
the country; there was
never a road, but when
many people walk on it,
the road comes into
existence.” Lin Yutang
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Keeping Hope Alive
Help find “bridges” to hope.
Assist with finding things to look forward to.
Encourage care partners to reach out.
Remind carers they cannot be all things to all people.
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“Hope is not about
believing that we can
change things. Hope is
about believing what
we do makes a
difference.”
Havel
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Understanding Family
Dynamics Assists Service
Providers,
Religious/Spiritual
Communities, and Care
Partners to Keep Hope
and Heart and the Spirit
Alive for All Involved.
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Family Dynamics
Roles
Rules
Secrets
Responsibilities
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Maintaining the role
of “family member ”
for the person cared
for is KEY.
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Secrets
All families have them; some have been hidden for years.
Old secrets may not be today’s secrets.
Shame exists around secrets.
Needs for forgiveness and healing are often present.
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Responsibilities
Families constantly balance responsibilities.
Each family works out its own equilibrium.
Conflicts can exist between work and home.
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Responsibilities Issues come up between generations and belief systems can interfere.
Competing responsibilities can overwhelm persons.
There are benefits in assisting families to evaluate and make choices.
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Family Feelings Exist for both care partners.
Need to be acknowledged and named. Naming decreases negative power.
Are not “good” or “bad.” They are.
Sharing with others makes them more bearable.
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Family Feelings
Sadness
Fear
Anger
Guilt
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Family Feelings
Helplessness
Hopelessness
Powerlessness
Ambivalence
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It is Also Possible to
Share
Laughter
Love
Joy
The “spiritual”
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Assessment of Family
Relationships
What long term positive interactions exist for the family?
Is this a family history of conflicted relationships?
What are the family strengths?
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Assessment of Family
Relationships
What has worked in the past for this family that could be used now?
What new skills could they learn?
What is the best way to offer assistance?
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Ethical Dilemmas For
the Family
Revolve around “quality of life”
What to tell…who to tell of the diagnosis and functional concerns
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“Quality of life” has
many meanings.
Each person has a
unique definition.
Know how each care
partner perceives this.
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More Ethical Dilemmas
Safety vs. autonomy
Driving
Decision making challenges
Bounded choices
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Goals for Helping
Families Cope:
Change from a “crisis mentality” to a “comforting presence.”
Small steps can move from stigma and stagnation to “well-being.”
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How Religious/
Spiritual Themes
Can be Integrated
in Practice
to Keep Hope Alive
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Putting Themes in
Practice
Assess how the “spiritual” is understood by families. Build on their definitions.
Utilize spiritual “strengths” and “inner resources.”
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Themes Into Practice
Affirm a sense of resiliency.
Explore beliefs about what is owed between generations.
Be present to both care partners.
Emphasize the “personhood of all.”
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Themes into Practice
Listen to stories.
Explore the meaning of suffering.
Work on unfinished business.
Consider sadness, loss and grief.
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Themes into Practice
Reframe self care questions.
Discuss bounded choices.
Maintain hope.
Use creative arts.
Remember seed planting.
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Integrating the Spiritual
Into Work With Families
Utilize the gifts of all ages to keep the family functioning.
Assist in negotiating barriers to service provision.
Know how beliefs affect choices.
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Integrating the Spiritual
Model effective communication skills.
Teach limit setting.
Stress contingency planning.
Build on “community” to assist families.
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Integrating the Spiritual
Make intentional use of spiritual support persons when appropriate.
Understand how precepts and beliefs may affect family’s end of life decision making.
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Spiritual/Religious
Community as Support
Educate faith communities in ways to best offer support to care partners.
Carers who been “givers” can learn to be receivers by examining beliefs about “independence”.
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Spiritual/Religious
Community As Support
Spiritual communities and service agencies can work together to offer assistance to care partners.
Remember all have a common goal of assisting care partners.
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Spiritual/Religious
Community As Support
May need assistance in overcoming physical and emotional barriers to support care partners
Can offer respite care, support group space, and friendly visiting
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Spiritual/Religious
Community As Support Can offer retreats for care partners
May adapt specific rituals or create new ones to deal with caregiving transitions
May remind carers of to share the “spiritual”
“
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Spiritual Leaders As
Resource
Clergy/other spiritual leaders can be resources.
They need help with communication with families.
Providers and these leaders can learn respectful referral skills.
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“Hope is an act of collaboration.
It cannot be achieved alone. We
offer grains or fragments of
hope to one another so that
everyone’s sense of possibility
can grow. In this way we can do
together what might seem
impossible alone. “
Kathleen Fischer
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Resources
Farran, C.J., Herth, K.A. & Popovich, J.M. (1995). Hope and Hopelessness: Critical Clinical Constructs. Thousand Oaks, CA: Sage Publications.
Lustbader, Wendy. (1991).Counting on Kindness: The Dilemmas of Dependency. New York: Free Press.
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Resources
Potts, D.C., Everman, L., Glazer, S.M., Morgan, R.L. & Wallack M. (Eds.). Seasons of Caring: Meditations for Alzheimer’s and Dementia Caregivers. Clergy Against Alzheimer’s Network. <www.SeasonsofCaring.org>
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Resources Richards, Marty. (2010) Caresharing: A
Reciprocal Approach to Caregiving and Care Receiving in the Complexities of Aging, Illness or Disability. Woodstock, VT: SkyLight Paths Publishing.
Thibault, Jane Marie. & Morgan, Richard L. (2009). No Act of Love is Ever Wasted: The Spirituality of Caring for Persons with Dementia. Nashville: Upper Room Books.