This document discusses anticipatory grief experienced by families facing a terminal illness like ALS. It defines anticipatory grief as the grief felt in response to being aware of a life-threatening illness in oneself or a loved one. The document outlines factors that influence the intensity of anticipatory grief and common symptoms like sadness, fear, anxiety and guilt. It also discusses challenges like witnessing a loved one's decline and benefits like the ability to say goodbye. The document promotes normalizing grief and provides the EASE model for supporting families through education, assessment, support and exploring needs and strengths.

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

2. 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

3. 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.

4. 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

5. 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)

6. 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.

7. 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

8. 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

9. 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)

10. 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.

11. 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

12. 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.

13. 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.

14. 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.

15. 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.

16. 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

17. 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”.

18. SUPPORTING FAMILIES FACING ALS
EASE Model
 Educate
 Assess
 Support
 Explore Needs/Strengths
 Carrington, NA, Bogetz, JF (2004)

19. THE EASE MODEL: EDUCATE
 Normalize grief as a natural response to loss
 Identify the range of typical responses
 Allow for individual differences

20. THE EASE MODEL: ASSESS
 Physical health
 Emotional/mental health
 Spiritual needs/strengths
 Behavioral/social changes
 Loss history
 Risk for complicated grief

21. 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?

22. THE EASE MODEL: ASSESS
 Emotional/Mental Health
 History of mental health issues
 Common response: inability to concentrate
and/or forgetfulness (“I feel like I’m going crazy!”)
 “Roller Coaster” of emotions

23. THE EASE MODEL: ASSESS
 Spiritual Needs/Strengths
 Religious or Theological
Providence, fate, God’s Will
Afterlife
Suffering or redemptive
Support of religious community
 Existential
Meaning
Purpose

24. 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

25. THE EASE MODEL: ASSESS
 Risks of Complicated Grief
 Predictors:
Violence of the death
Ability to make sense of the death
 Length of time that symptoms have persisted
 Extent of interference in daily life
Extreme isolation
Abrupt major lifestyle changes
 Intensity of symptoms
Suicidal ideation
Severe depression

26. THE EASE MODEL: SUPPORT
 Be present and available
 Communication
 Need for short, frequent conversations
 Honest and authentic responses
 Realistic life expectancy
 Decision-Making
 Goals of Care

27. THE EASE MODEL: SUPPORT
 Coping
 Problem-focused coping and positive reappraisal
most effective strategies in maintaining an
optimistic attitude
 Life Review/Legacy

28. THE EASE MODEL:
EXPLORE NEEDS AND STRENGTHS
 Perception of Support
 Family
 Community
 Communication Preference
 Coping Skills
 Changes over time

29. 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.

30. 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.

31. 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.

32. 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.

33. ANTICIPATORY GRIEF
 Questions or Comments?
 Feel free to contact me:
 Sabrina Schalley
 sabrina@alsintheheartland.org
 1.866.789.5512