presentation 218 sabrina schalley anticipatory grief in als families

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ANTICIPATORY GRIEF IN ALS FAMILIES Sabrina M. Schalley, LCSW Patient Services Director ALS in the Heartland November 2014

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Page 1: Presentation 218  sabrina schalley anticipatory grief in als  families

ANTICIPATORY GRIEF IN ALS FAMILIESSabrina M. Schalley, LCSW

Patient Services Director

ALS in the Heartland

November 2014

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MY HISTORY:

Academic: Licensed, Clinical Social Worker since 1995

Professional: Twenty years of counseling experience in the field of grief and loss; Certified Grief Recovery Specialist in 2011

Personal: I have been honored to have been the primary caregiver for a beloved family member diagnosed with a terminal illness

ALS Experience: Six years as the primary Social Worker for over 200 patient families

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WORKSHOP OBJECTIVES:

Learn the principals of Anticipatory Grief; Comprehend how Anticipatory Grief impacts

families touched by ALS; Develop an understanding of when and how

to counsel families on this issue; and Increase feelings of preparedness to address

Anticipatory Grief with patient families in practice.

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DEFINITION OF TERMS:

Loss = Change = Grief Grief: the physical, psychological, spiritual,

cognitive, and behavioral responses to the (perceived) threat of a loss

Mourning: the outward expression of grief

Bereavement: the state of having suffered a loss

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ANTICIPATORY GRIEF:

Response to awareness of a life-threatening or terminal illness in oneself or a significant other and the recognition of associated losses

Rando, TA, ed (2000)

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ANTICIPATORY GRIEF:

(in “normal” language) Is what happens when you know there will be a

loss, but it has not yet occurred. This is what occurs when you or your loved one is

diagnosed with a terminal illness and have time to prepare.

Unlike bereavement after a death, anticipatory grief is experienced by both the person who is ill and by the other family members.

This grief process has a clearly defined beginning; it also has a definite ending.

Unlike bereavement, anticipatory grief can include a period of hopefulness when the disease is being effectively managed.

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ANTICIPATORY GRIEF

Potential losses associated with illness: Loss of body control Loss of hopes, dreams Loss of employment/finances Loss of independence and control Loss of feeling of self-worth Loss of role in the family Loss of love Loss of stability and security

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FACTORS THAT INFLUENCE THE INTENSITY OF ANTICIPATORY GRIEF MAY INCLUDE:

The nature of the relationships between family members

The importance of the role the person who is ill plays in each family member’s life

The quality of life the family has experienced since the diagnosis was made

The length of the illness and the burden of caregiving

The way the family copes with sorrow, change, and loss

The ability of the family members to communicate thoughts, feelings, and needs to each other

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FACTORS THAT INFLUENCE THE INTENSITY OF ANTICIPATORY GRIEF MAY INCLUDE:

The amount of support the family gets from relatives, friends, and the community in general

The family’s cultural, ethnic, and religious background

The health of the other family members The presence of other stressful situations

within the family (e.g., financial problems, strained relationships, single parent households, etc)

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FAMILY RELATIONSHIPS:

A terminal disease like ALS has the power to strengthen healthy family relationships or shatter already weakened ones.

The constantly changing abilities, roles, and physical appearance of the person who is ill puts tremendous strain on each family member.

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AND, EVEN MORE:

People in certain situations must often cope with extra pressures:

Newlyweds who are still establishing a marital relationship

Families with changed financial conditions, social status, and usual responsibilities

Families where there has been a divorce People who must make major life decisions

before they may be ready People who have had difficult or uncompleted

previous loss experiences

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AND, EVEN MORE CONTINUED…

Couples with dependent children Adolescents – In general, this age child has

difficulty in dealing with a degenerative disease like ALS

Young children – Change and the disruption of normal routines may upset young children

People who receive an inaccurate prognosis. If the person dies too soon, the family may feel angry and deprived. If the person survives past the predicted span, fatigue or stress may cause difficult feelings.

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ANTICIPATORY GRIEF SYMPTOMS:

The emotions that accompany anticipatory grief are similar to those after a loss, but can be even more like a roller coaster at times. Some days may be really hard. Other days you may not experience grief at all.

Sadness and tearfulness Fear – Including not just the fear of death, but

fear about all the changes that occur. Irritability and anger – Both in the patient and the

caregivers. Loneliness – A sense of intense loneliness is often

experienced. Unlike grief after a loss, the feeling that it’s not socially acceptable to express anticipatory grief can add to feelings of isolation.

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ANTICIPATORY GRIEF SYMPTOMS CONTINUED:

Desire to Talk – Loneliness can result in a strong desire to talk to someone, anyone, who might understand and listen without judgment.

Anxiety – When you are living in a life & death reality, it’s like living in a state of heightened anxiety all of the time. Anxiety in turn can cause physical symptoms such as tremulousness and shaking.

Guilt – For some people the time prior to a loved one’s death can be a time of great guilt. You long for your loved one to be free of pain (and hence, die), yet you fear the moment that death will actually happen. You may also experience survivor guilt – that you can continue on.

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ANTICIPATORY GRIEF SYMPTOMS CONTINUED:

Intense concern for the person dying. Rehearsal of the death – Family members

may find themselves visualizing what it will be like to have their loved one gone. Or, for the patient, visualizing how your loved ones will carry on.

Physical Problems – Such as difficulty sleeping and memory problems.

Fears of loss, compassion, and concern in children – Studies have found that fears about what is going to happen and how they would be cared for were very strong in children.

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ANTICIPATORY GRIEF BENEFITS (YES, THERE ARE SOME!):

The chance for important, delicate conversations

Ability and time to let go of regrets held with or about your loved one

Take the time to make amends with your loved one, and to tell him/her how you feel about them

You can let go of anger or guilt Make plans for the future – deal with financial

changes, tax issues, insurance, a will, and funeral arrangements

Leave a legacy – tell your life story in your own special, unique way

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ANTICIPATORY GRIEF CHALLENGES:

Witnessing your loved one’s struggle with death As conditions worsen, you may grieve with each

downturn Experience senses of helplessness and

hopelessness May feel like you are living with a “pit” in your

stomach that won’t go away Attempting to cope with fear may cause

personality changes from day to day, or even moment to moment

Perhaps the most difficult…tolerating living in a state of emergency for an extended period of time. The mind can only tolerate so much “angst”.

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SUPPORTING FAMILIES FACING ALS

EASE Model Educate

Assess

Support

Explore Needs/Strengths

Carrington, NA, Bogetz, JF (2004)

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THE EASE MODEL: EDUCATE

Normalize grief as a natural response to loss

Identify the range of typical responses

Allow for individual differences

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THE EASE MODEL: ASSESS

Physical health Emotional/mental health Spiritual needs/strengths Behavioral/social changes Loss history Risk for complicated grief

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THE EASE MODEL: ASSESS

Questions to ask:

What concerns you most right now? What brings you comfort? What does your experience look and feel

like? Who do you talk with? What behavior changes are you seeing in

your children?

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THE EASE MODEL: ASSESS

Emotional/Mental HealthHistory of mental health issuesCommon response: inability to concentrate

and/or forgetfulness (“I feel like I’m going crazy!”)

“Roller Coaster” of emotions

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THE EASE MODEL: ASSESS

Spiritual Needs/StrengthsReligious or Theological

Providence, fate, God’s WillAfterlifeSuffering or redemptiveSupport of religious community

ExistentialMeaningPurpose

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THE EASE MODEL: ASSESS

Behavioral/Social Changes Family Financial Status/Employment Impact on children in the family

Loss History Previous losses, including non-death related Recent secondary losses (financial, home) Disenfranchised (socially taboo) losses Cumulative losses Inability to grieve prior losses

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THE EASE MODEL: ASSESS

Risks of Complicated GriefPredictors:

Violence of the deathAbility to make sense of the death

Length of time that symptoms have persisted

Extent of interference in daily lifeExtreme isolationAbrupt major lifestyle changes

Intensity of symptomsSuicidal ideationSevere depression

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THE EASE MODEL: SUPPORT

Be present and available Communication

Need for short, frequent conversationsHonest and authentic responsesRealistic life expectancy

Decision-MakingGoals of Care

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THE EASE MODEL: SUPPORT

CopingProblem-focused coping and positive

reappraisal most effective strategies in maintaining an optimistic attitude

Life Review/Legacy

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THE EASE MODEL: EXPLORE NEEDS AND STRENGTHS

Perception of Support Family Community

Communication Preference Coping Skills Changes over time

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ANTICIPATORY GRIEF: FINAL THOUGHTS

Accept that Anticipatory Grief is Normal You are normal and feeling grief before a death

is normal. You are allowed to feel this type of grief. Seriously. You are not alone.

Acknowledge the Losses People may say annoying things that minimize

what is happening. Consider journaling or other creative outlets to express emotions around things like acceptance of the impending death, loss of hope, loss of the future imagined, etc

Connect with Others Seek out support groups in the area or online.

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ANTICIPATORY GRIEF: FINAL THOUGHTS

Remember that Anticipatory Grief doesn’t mean giving up

As long as support is provided, no one is giving up. There can be a feeling of guilt that comes with acceptance. The shift is from hope for recovery to hope for meaningful, comfortable time together.

Reflect on the Remaining Time Consider how to spend the remaining time

together – do the best to make it meaningful. Communicate

Expect that everyone may be experiencing and coping with anticipatory grief in different ways. Keeping the lines of communication open can help everyone better understand each other.

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ANTICIPATORY GRIEF: FINAL THOUGHTS

Take Care of Yourself Remember the old cliché, you can’t take care of

others if you don’t take care of yourself. Take Advantage of Your Support System

Caregiving and Anticipatory Grief can be a long road – call for reinforcements (and acknowledge who you might want to avoid).

Say “Yes” to Counseling Counseling is helpful for normal, everyday

people who just need a place to process complicated emotions.

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ANTICIPATORY GRIEF: FINAL THOUGHTS

Relief is Normal Feelings of relief after an anticipated death does

not mean there was not extreme love – it is a normal reaction after a stressful and overwhelming time in life.

Don’t Assume Just because the loss was anticipated, do not

assume this will speed up or slow down grief after death. Everyone grieves differently.

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ANTICIPATORY GRIEF

Questions or Comments?

Feel free to contact me: Sabrina Schalley [email protected] 1.866.789.5512