presentation 218 sabrina schalley anticipatory grief in als families
TRANSCRIPT
ANTICIPATORY GRIEF IN ALS FAMILIESSabrina M. Schalley, LCSW
Patient Services Director
ALS in the Heartland
November 2014
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
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.
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
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)
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.
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
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
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)
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.
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
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.
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.
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.
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.
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
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”.
SUPPORTING FAMILIES FACING ALS
EASE Model Educate
Assess
Support
Explore Needs/Strengths
Carrington, NA, Bogetz, JF (2004)
THE EASE MODEL: EDUCATE
Normalize grief as a natural response to loss
Identify the range of typical responses
Allow for individual differences
THE EASE MODEL: ASSESS
Physical health Emotional/mental health Spiritual needs/strengths Behavioral/social changes Loss history Risk for complicated grief
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?
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
THE EASE MODEL: ASSESS
Spiritual Needs/StrengthsReligious or Theological
Providence, fate, God’s WillAfterlifeSuffering or redemptiveSupport of religious community
ExistentialMeaningPurpose
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
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
THE EASE MODEL: SUPPORT
Be present and available Communication
Need for short, frequent conversationsHonest and authentic responsesRealistic life expectancy
Decision-MakingGoals of Care
THE EASE MODEL: SUPPORT
CopingProblem-focused coping and positive
reappraisal most effective strategies in maintaining an optimistic attitude
Life Review/Legacy
THE EASE MODEL: EXPLORE NEEDS AND STRENGTHS
Perception of Support Family Community
Communication Preference Coping Skills Changes over time
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.
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.
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.
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.
ANTICIPATORY GRIEF
Questions or Comments?
Feel free to contact me: Sabrina Schalley [email protected] 1.866.789.5512