Aging/End of LifeAging/End of LifeCrisis or OpportunityCrisis or Opportunity

For Individuals and Service For Individuals and Service ProvidersProviders

Our Talk: Values We Hold DearOur Talk: Values We Hold Dear

Independence (=Identity?)Independence (=Identity?)

Productivity (=Purpose?)Productivity (=Purpose?)

Inclusion (=Community?)Inclusion (=Community?)

Self Determination (=Power and Self Determination (=Power and control?)control?)

End of Life/DeathEnd of Life/DeathDoes it end the talk?Does it end the talk?

Destroyer of independence, return to Destroyer of independence, return to dependence, loss of identitydependence, loss of identity

Why am I? question of purpose replaced Why am I? question of purpose replaced by the Why? of death?by the Why? of death?

End of community as we know it.End of community as we know it.

Often even less control and powerOften even less control and power

In Old Systems of CareIn Old Systems of Care

Aging and Death a “Key Indicator” of Aging and Death a “Key Indicator” of

Loneliness and loss of connectionLoneliness and loss of connection

Injustice, no power, at hands of family Injustice, no power, at hands of family and/or systemand/or system

AbandonmentAbandonment

Family woundsFamily wounds

In “New” SystemsIn “New” Systems

Loneliness often still there: Who are the Loneliness often still there: Who are the unpaid friends?unpaid friends?

Evidence of disconnection even while Evidence of disconnection even while living in “the community”living in “the community”

Disconnect between family and staff often Disconnect between family and staff often still therestill there

Routine medical care can become end of Routine medical care can become end of life issue—quality of life assumptionslife issue—quality of life assumptions

New Challenges and CrisesNew Challenges and Crises

Death as “double injustice”Death as “double injustice”

Disability enough to deal with, why this?Disability enough to deal with, why this?

Aging, disability, death=cursesAging, disability, death=curses

Anger by staff and others atAnger by staff and others atFamilyFamily

Other staffOther staff

LossesLosses

Challenges and Crises (cont.)Challenges and Crises (cont.)

Processing of Grief and Loss:Processing of Grief and Loss:

By families and friendsBy families and friends

By transitions and change, including By transitions and change, including turnover. Turnover increased by turnover. Turnover increased by unrecognized griefunrecognized grief

By stigma and stereotypesBy stigma and stereotypes

Challenges and Crises (cont)Challenges and Crises (cont)

Pressures and ParadoxesPressures and Paradoxes

““They don’t understand” vs. “Move on They don’t understand” vs. “Move on quickly.”quickly.”

Importance of relationships, not program Importance of relationships, not program or plan.or plan.

Pressure to fill the empty slot, bed, or Pressure to fill the empty slot, bed, or place at the tableplace at the table

Ambivalence and PreparednessAmbivalence and Preparedness

Don’t need a plan yet”Don’t need a plan yet” vs.vs. Clients’ age range Clients’ age range 59 59 to 85to 85

““In our care”In our care” VS.VS. “Not on my shift”“Not on my shift”

““Comfort of hospital”Comfort of hospital” vs. vs. Questioning hospital Questioning hospital carecare

““We’re his family”We’re his family” vs.vs. Family: nursing Family: nursing home home planplan

Michelle Wiese. (2007) End of Life Care and Dying in Place: Choices and Needs of People with Michelle Wiese. (2007) End of Life Care and Dying in Place: Choices and Needs of People with Intellectual Disabilities and their Carers. IASSID. Intellectual Disabilities and their Carers. IASSID.

Ambivalence and ProtectionismAmbivalence and ProtectionismDo you talk about it?”Do you talk about it?” vsvs “He couldn’t comprehend it”“He couldn’t comprehend it”

Client asking about deathClient asking about death vs.vs. vs.vs. “I change the subject”“I change the subject”

Client queries body change Client queries body change vs.vs. “You’re getting old, forget it”“You’re getting old, forget it”

““They [clients] talk about They [clients] talk about vs.vs. “…I don’t want to upset her” “…I don’t want to upset her”death all the time” death all the time”

Michelle Wiese. (2007) End of Life Care and Dying in Place: Choices and Needs of People with Intellectual Disabilities Michelle Wiese. (2007) End of Life Care and Dying in Place: Choices and Needs of People with Intellectual Disabilities and their Carers. IASSID. Capetown.and their Carers. IASSID. Capetown.

AntithesisAntithesis

Of Growth and LifeOf Growth and Life

Of Power and Control (“theirs” and “ours”)Of Power and Control (“theirs” and “ours”)

Of Presence, Participation, and Of Presence, Participation, and MembershipMembership

The Perfect StormThe Perfect Storm

Currents in DD systems and care is toward Currents in DD systems and care is toward growth, development of potential, new life.growth, development of potential, new life.

End of life not in the plansEnd of life not in the plans

Currents in health care toward healing, cure, Currents in health care toward healing, cure, fix, death too often enemy and disability fix, death too often enemy and disability evidence of failure.evidence of failure.

God bless this tiny little boatGod bless this tiny little boatAnd me who travels in it.And me who travels in it.

It floats and floats for years and yearsIt floats and floats for years and yearsAnd sinks within a minuteAnd sinks within a minute

And so the soul on which we sailAnd so the soul on which we sailUnknown by years of thinking Unknown by years of thinking Is deeply felt and understoodIs deeply felt and understoodThe minute that it’s sinking.The minute that it’s sinking.

-Michael Leunig-Michael Leunig

OpportunityOpportunity

To be “faithful” to our values rather than To be “faithful” to our values rather than “successful.”“successful.”To remember connections to past, To remember connections to past, present, and futurepresent, and futureTo re-member connections to communities To re-member connections to communities of which people have been a partof which people have been a partBuild new communities of care and Build new communities of care and meaning.meaning.Build new partnerships and collaborationsBuild new partnerships and collaborations

Faithful PracticeFaithful Practice

Faith:Faith:

““A process of hoping backwards and remembering A process of hoping backwards and remembering forwards.” Paul Lehman. forwards.” Paul Lehman.

Choices and Advanced Care Planning are not just Choices and Advanced Care Planning are not just about treatments, DNR’s and AD’s, but what has about treatments, DNR’s and AD’s, but what has given life meaning. Move that forward, front and given life meaning. Move that forward, front and center, in the final journey.center, in the final journey.

RememberingRemembering

Remember is more than paying attention.Remember is more than paying attention.

Remember: Connections with past and Remember: Connections with past and future.future.

Re-Member: Connecting to communities Re-Member: Connecting to communities of which I have and have been a partof which I have and have been a part

Re-menting: Holding memories for othersRe-menting: Holding memories for others

That that person’s life mattered, and every That that person’s life mattered, and every life matters. life matters.

Personal and Professional Faith as Personal and Professional Faith as Capacity to Embrace ParadoxCapacity to Embrace Paradox

Paradoxes of Aging and End of LifeParadoxes of Aging and End of Life

Honor and IndignityHonor and Indignity

Blessing and CurseBlessing and Curse

Growth and DecayGrowth and Decay

Wisdom and SenilityWisdom and Senility

Engagement and RenunciationEngagement and Renunciation

Paradoxes of RolesParadoxes of Roles

Staff, family, and/or friendStaff, family, and/or friend

“ “Be with” as well as “do for”Be with” as well as “do for”

“ “Care for needs” as well as “celebrate Care for needs” as well as “celebrate gifts.”gifts.”

Specialized supports vs. “give it away”Specialized supports vs. “give it away”

Know what we don’t know, and use that to Know what we don’t know, and use that to invite others in.invite others in.

OpportunityOpportunity

Revision not as decline but as journey.Revision not as decline but as journey.How can we help that to be as self determined How can we help that to be as self determined as possible? What is really important to you as possible? What is really important to you now? Retirement and endings.now? Retirement and endings.To build new networks of care and support for To build new networks of care and support for both people with developmental disabilities, both people with developmental disabilities, staff, and families.staff, and families.

Opportunity to RevisionOpportunity to Revision

Independence: “Who am I?” to “Who have I Independence: “Who am I?” to “Who have I been?”been?”

Productivity: “Why am I?” to “What Productivity: “Why am I?” to “What difference can I make now, and have I difference can I make now, and have I made?”made?”

Inclusion: “Whose am I?” to “Who Inclusion: “Whose am I?” to “Who remembers me?” “Whose have I been?”remembers me?” “Whose have I been?”

Self Determination: “Choices heard and Self Determination: “Choices heard and honored in my final days.”honored in my final days.”

““Unique” Tasks of AgingUnique” Tasks of Aging

Reaffirm covenant obligations to communityReaffirm covenant obligations to communityBlessing…how have you been that, done that, Blessing…how have you been that, done that, and give that?and give that?Honor in aging, dignity, respect, appreciationHonor in aging, dignity, respect, appreciationFaith in face of lossFaith in face of lossReconciliation of discordant experiences, e.g., Reconciliation of discordant experiences, e.g., letting go, reunion, forgivingletting go, reunion, forgiving

- The Challenges of Aging: Retrieving Spiritual Traditions. - The Challenges of Aging: Retrieving Spiritual Traditions. The Park Ridge Center.The Park Ridge Center.

Challenges to People with Disabilities Challenges to People with Disabilities and People who are Aging and and People who are Aging and

CaregiversCaregiversWho is their community? Family, work, staff, Who is their community? Family, work, staff, other consumers?other consumers?

Where do they have, receive, and give the Where do they have, receive, and give the blessing?blessing?

How are their journeys and survival stories How are their journeys and survival stories honored and respected?honored and respected?

Is grief/faith practice honored and supported?Is grief/faith practice honored and supported?

Can we look back with them, and support Can we look back with them, and support remembering, reconciliation, reunion?remembering, reconciliation, reunion?

Covenant Obligations to Covenant Obligations to CommunityCommunity

What communities have they (and we) What communities have they (and we) been part of?been part of? What do you want to do with them?What do you want to do with them? Who’s been important to you?Who’s been important to you?What have been my favorite activities?What have been my favorite activities?

Thru pictures, revisiting, place to volunteer, Thru pictures, revisiting, place to volunteer, membership rituals (it’s never too late)membership rituals (it’s never too late)

(Resource: A Guide to Building Community Membership for Older Adults with (Resource: A Guide to Building Community Membership for Older Adults with Disabilities. Harlan, Todd, and Holtz. Institute for Study of Developmental Disabilities. Harlan, Todd, and Holtz. Institute for Study of Developmental Disabilities. UCEDD of Indiana.)Disabilities. UCEDD of Indiana.)

Giving and Receiving BlessingGiving and Receiving Blessing

What have been someone’s key strengths What have been someone’s key strengths and gifts? and gifts?

How could they give them to others, How could they give them to others, including young workers and including young workers and professionals, families, and friends?professionals, families, and friends?

What do you want others to have that What do you want others to have that remind them of you?remind them of you?

Blessings in the IHP ProcessBlessings in the IHP Process

Restoring Honor in AgingRestoring Honor in Aging

How do we as professionals and How do we as professionals and caregivers ask for their blessing?caregivers ask for their blessing?

Turn charts and records into stories.Turn charts and records into stories.

Revision “consumers” as “survivors” and Revision “consumers” as “survivors” and “veterans.”“veterans.”

Telling “them” what “they” have meant to Telling “them” what “they” have meant to “us”“us”

Maintaining Faith in Face of LossMaintaining Faith in Face of Loss

Help people prepare.Help people prepare.Help people participate in the rituals of Help people participate in the rituals of loss and mourning.loss and mourning.New efforts to honor practices of New efforts to honor practices of spirituality and build supports that will be spirituality and build supports that will be there at the end.there at the end.

Resources: Resources: Books Beyond Words, My Own Grief Book (Bethesda Lutheran Books Beyond Words, My Own Grief Book (Bethesda Lutheran Homes and Services, Inc.) and Mark Markell Homes and Services, Inc.) and Mark Markell Helping People with Helping People with Developmental Disabilities Mourn: Practical Rituals for CaregiversDevelopmental Disabilities Mourn: Practical Rituals for Caregivers. Fort . Fort Collins,CO: Companion Press. Collins,CO: Companion Press. www.centerforloss.comwww.centerforloss.com

Rationales for Paying Attention to Rationales for Paying Attention to Spiritual SupportsSpiritual Supports

Tapping the power of the sacred in Tapping the power of the sacred in people’s livespeople’s lives

Ways that people find meaning and copeWays that people find meaning and cope

Cultural competency/cultural humilityCultural competency/cultural humility

Self DeterminationSelf Determination

Quality of LifeQuality of Life

Impact on HealthImpact on Health

ReconciliationReconciliation

Telling their story, in pictures and words, Telling their story, in pictures and words, e.g., supported writing, life stories.e.g., supported writing, life stories.

Re-membering connections with families, Re-membering connections with families, friends, old staff.friends, old staff.

Reunion with others or placesReunion with others or places

Return home, to the people I knowReturn home, to the people I know

Anticipatory Grieving by ProvidersAnticipatory Grieving by Providers

Moments to teach and talk about death Moments to teach and talk about death and loss with those we support.and loss with those we support.Build relationships with local resources so Build relationships with local resources so the comforters are not strangers.the comforters are not strangers.Address and honor spirituality.Address and honor spirituality.Staff in-serviceStaff in-serviceGrief and Loss Response TeamGrief and Loss Response TeamLoss assessments, planning ahead with Loss assessments, planning ahead with family and guardians.family and guardians.

Key Strategies for GrievingKey Strategies for Grieving

First, recognize it and welcome it. “Grief First, recognize it and welcome it. “Grief delayed is grief denied and grief denied is delayed is grief denied and grief denied is grief delayed.”grief delayed.”

Create a safe place for it. A sanctuary. Create a safe place for it. A sanctuary.

Be alert for behavioral expressions.Be alert for behavioral expressions.

Key Strategies for GrievingKey Strategies for Grieving

Accurate and honest information and Accurate and honest information and support to process it.support to process it.Enable maximum involvement in the social Enable maximum involvement in the social and spiritual activities surrounding deathand spiritual activities surrounding deathKeep connected with key supportive Keep connected with key supportive relationshipsrelationshipsMaximize opportunities for expression of Maximize opportunities for expression of grief and condolences.grief and condolences. - - Jeffrey Kaufmann, Jeffrey Kaufmann, Helping Persons with Mental Retardation Mourn.Helping Persons with Mental Retardation Mourn.

At the End of the JourneyAt the End of the Journey

Caring for and with the whole communityCaring for and with the whole community

Families, friends, staff, connectionsFamilies, friends, staff, connections

Creative rituals of loss and celebrationCreative rituals of loss and celebration

Honoring individual differences and Honoring individual differences and community as a whole.community as a whole.

At the End of the JourneyAt the End of the Journey

““I forgive you”I forgive you”

““Please forgive me”Please forgive me”

““Thank you”Thank you”

““I love you”I love you”

““Goodbye”Goodbye”

Recovering the “Profess” in Recovering the “Profess” in ProfessionalProfessional

Capacity to journey with others: loyalty, fealtyCapacity to journey with others: loyalty, fealty

Capacity to deal with the tough ethical and Capacity to deal with the tough ethical and spiritual questions that disability and end of life spiritual questions that disability and end of life so starkly raise for usso starkly raise for us

Capacity to recognize and celebrate those holy Capacity to recognize and celebrate those holy moments and miracles of accomplishment and moments and miracles of accomplishment and growthgrowth

Capacity to give thanks for discovery, meaning, Capacity to give thanks for discovery, meaning, and gift to usand gift to us

Capacity to sacrifice, give up, for sake of othersCapacity to sacrifice, give up, for sake of others

ResourcesResources

Three page listing of good resources, Three page listing of good resources, including those mentioned, on The Boggs including those mentioned, on The Boggs Center website (under Health in the Center website (under Health in the Projects area) and AAIDD. Projects area) and AAIDD. http://rwjms.umdnj.edu/boggscenter/projects/end_of_life.htmlhttp://rwjms.umdnj.edu/boggscenter/projects/end_of_life.html

Powerpoint of Presentation: Powerpoint of Presentation: www.aaidd.orgwww.aaidd.org

Pax and ShalomPax and Shalom

Rev. Bill GaventaRev. Bill Gaventa

The Boggs Center on Developmental DisabilitiesThe Boggs Center on Developmental Disabilities

Robert Wood Johnson Medical School/UMDNJRobert Wood Johnson Medical School/UMDNJ

P.O.Box 2688P.O.Box 2688

New Brunswick, New Jersey 08903New Brunswick, New Jersey 08903

732-235-9304732-235-9304

Email: bill.gaventa@umdnj.eduEmail: bill.gaventa@umdnj.edu