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Understanding and Managing

Loss and Grief

A Workbook for Dementia Caregivers
he Alzheimer Society of B.C. wishes to thank Betty Andersen, M.A., who initially developed the
materials for the six-part educational series, Coping with Transitions in Dementia Caregiving: Dimensions
Tof Loss and Grief, and Deb Ribeyre, M.Ed. who worked to improve the series.
Holly Tuokko, University of Victoria Centre on Aging; and Marianne McLellan and Sandie Somers, Vancouver
Island Health Authority Seniors and Spiritual Health.

We give special recognition to those family caregivers who courageously participated in the education series
over the past few years, and gave us their suggestions on ways that it could be enhanced.
Thank you to Sherry Lepage who worked to edit and shape the materials into this workbook.
The development and piloting of the Coping with
Transitions series was funded by the Vancouver Island
Health Authority Seniors and Spiritual Health and the
Alzheimer Society's Grant to Improve Dementia Care in
B.C., which was provided by the B.C. Ministry of Health.
We wish to thank the Alzheimer Society of Canada,
which provided funds to examine the effectiveness of
the Coping with Transitions intervention on caregivers'
grief, coping, empowerment and resilience. The
research was carried out by Drs. Penny MacCourt and
Workbook produced by MultiMedia Services, Vancouver Island Health Authority.
Author: Betty Andersen, M.A.
Editor: Sherry Lepage
Electronic book text (pdf)
ISBN 978-0-9739243-3-6
Spiral Bound
ISBN 978-0-9739243-2-9
MMS Vancouver Island Health Authority
Victoria, British Columbia, Canada
A Workbook for Dementia Caregivers
his workbook, which includes more detailed information sheets and self-assessment exercises, helps
caregivers to understand and engage with their own grief process, either as part of a support group, or on
Ttheir own.
It also suggests ways to maintain mental, physical and spiritual wellness to sustain energy for the marathon of
dementia caregiving.
l common reactions that are stirred up by the many ongoing losses that come with caring for someone
with dementia,
l the importance of acknowledging and naming grief, and
l some of the stress management and support strategies caregivers find helpful.
The experiences that family caregivers discuss in the first three video sections have introduced:
The most heartfelt loss is different from person to person, but the
one I hear about most often is the loss of the sense of connection
with the person who has dementia.
- Betty Andersen, Caregiver Grief Educator
The Effects of any Significant Change
Life is full of changes - some we expect, some we don't expect - some we want, some we don't want.
Section 1
I've adjusted a bit to being home alone,
but it's just awful watching the person
you love slowly vanish.
n this section, caregivers will learn about the stages of any significant
change or transition: the ending, neutral zone and new beginning.
IFeelings of loss and grief are a normal response to changes, especially
when something is ending. One example of an ending might be when the
person with dementia can no longer live at home.
The information in this section helps caregivers identify their own felt
losses and name their own grief reactions, and suggests some short-
term containment strategies to use while considering these challenging
It is challenging, indeed, to weather any of life's inevitable changes. Human beings have a built in ability to
adjust to change and experience a psychological process, which can be described as transition, as they do so.
It can require true courage to tolerate this process.
Note that some especially significant change results in a transition that might better be described as a
TRANSFORMATION - where the neutral zone is more chaotic, and the course of adjustment is more creatively
circuitous. Alzheimer Disease and related dementias have been described as life-transforming conditions.
The implications of Alzheimer Disease and related dementias are that there are, and will continue to be, a
multitude of changes in many aspects of one's life that will require adjustment. There are, and will be, a
variety of reactions and feelings to the ongoing process of adjustment and readjustment.
These reactions do not happen in a neat nor orderly way.
Understanding and acknowledging these wide-ranging reactions and emotions can help one to cope.
There are ways, in addition to talking to others, to process feelings, such as:
l writing in a journal
l becoming involved in artistic hobbies
l following spiritual pursuits
l listening to music
l reading or writing poetry and other writings
l taking time to reflect
Some typical reactions that get stirred up in the face of the changes of the dementia journey
Figure 1: Typical Reactions
Changes That Stir Up Grief
The dementia journey creates unique challenges and
numerous transitions: multiple stages, multiple
settings, many years duration, changes in direction
often precipitated by crises, many choices and ethical
David Shenk described Alzheimer Disease as "death
not by a thousand cuts but by a thousand
subtractions". (The Forgetting, published in New
York by Random House, 2001)
For most caregivers, there are significant periods of
increased grief in response to challenging milestones
along the dementia journey. These key milestones
can be referred to as pinchpoints.
Figure 2: Pinchpoints
Change = Loss = Grief Response
Section 2
l a natural, inescapable part of being human, given that change is inevitable in life;
l the universal process and necessary response to any type of personally significant loss, during the early,
middle and late stages of the progression of dementia, not just at the time of death;
l experienced on a spectrum of intensity, from subtle to overwhelming;
l holistic, experienced in all facets of one's being;
l an important part of healing: it is our innate process of adjusting to losses, big and small.
Grief is:
Caregiver = Care-Griever
The dementia journey creates unique challenges for grieving: multiple stages, multiple settings, many years
duration, changes in direction often precipitated by crisis, many choices and ethical dilemmas. The very
experience of caregiving may complicate grief.
Grieving takes energy. Grieving takes longer than most people think.
Grief is the constant yet hidden companion of Alzheimer's Disease and other related dementias.
Grief is a companion to Alzheimer's Disease at all phases of the disease and following death.
From: Doka, K. J. Grief and Dementia. In Doka, K. J. (Ed.) Living with Grief - Alzheimer's Disease. Washington, D.C.:
Hospice Foundation of America, 2004, Pages 139, 144.
Witnessing the gradual decline of a loved one's memory and previous personality evokes
a form of grief unlike any other. As if this anguish were not enough, few dementia
caregivers are aware that what they are experiencing is indeed grief. This lack of
knowledge that grief is a natural, normal and universal experience of dementia
caregivers can result in added and unnecessary distress.
It would be like a mother-to-be going through labour all alone and with no previous
information about what to expect in childbirth. A woman with the knowledge of what is
to be expected in childbirth still endures discomfort and pain, but has the reassurance
that others have experienced this normal process. The mom-to-be that lacks this
knowledge suffers the additional distress of isolation and fear of the unknown.
- Debbie Ribeyre, Counsellor and Grief Support Group Facilitator
his section helps caregivers identify the losses that will likely occur at various points along the trajectory
of the disease process. They will also learn about the impacts - physical/behavioural, emotional,
Tpsychological, spiritual and social - of these losses. It can be helpful to learn about the special factors
that complicate the grief process for dementia caregivers, and to recall strategies that were used to cope
successfully with past losses.
The grief experienced by a family caregiver along the dementia journey can have many
layers, which include:
Ambiguous grief: grief that has no clear starting point and no clear ending point (no markers). The
person with dementia is physically present, but psychologically changed: the goodbye without
leaving. Some researchers say this is the most stressful kind of loss.
Non-finite loss: losses that depend on the passage of time. Witnessing the ongoing, progressive
cognitive decline of a family member is a constant reminder of 'what is' and 'what was' and 'what was
hoped for'.
Disenfranchised grief: loss that is not openly acknowledged, socially supported, or publicly shared.
The shame, secrecy and stigma of dementia can add to this disenfranchisement. There can also be a
stigma associated with grieving the loss of a person before the actual death occurs.
Anticipatory grief: the reaction to a perceived impending loss, as well as reaction and response to
all losses already experienced within the new reality of illness. That is, continually adapting to ongoing
losses. These losses and the grief reactions they evoke are part of the daily experience of people
affected by dementia.
What gets screwed up is my ability to see him as he once was.
He's there, but I can't reach him anymore.
- Hetty
It's the diminishment that happens day by day, and you just
don't know where the end point is.
- Mary Jean
It's a bit like watching a wonderful lighted sculpture where the
lights are going out one at a time.
- Tim
I have one sister who does not acknowledge him at allit makes
it so much harder for me, because it makes me feel, am I
supposed to be grieving yet, because he's still here.
- Cindy
The grief experienced by a family caregiver along the dementia journey can have many
components, which include:
l Grief for personal losses - what the caregiver gives up to function in the caregiver role
l Worry and isolation, which represents a pervasive sense of uncertainty regarding how things will turn
out, coupled with the isolation from others caregivers often feel
Caregivers may need to experiment with other ways to cope with the long-term, ambiguous,
disenfranchised losses that come along the dementia journey, if they have experienced only finite
losses in the past.
Grief and loss can be experienced quite differently among various family members. Each caregiver will
experience loss and grief (with its various layers and components) in a unique and individual way.
l Heartfelt sadness for the losses of the family member who has the dementia, and longing for things
to be different
I grieve all the things we're missing.
- Trudy
She lives in the moment so much; it's not a
problem for her, why can't I learn that it shouldn't
be a problem for me?
- Tim
My husband was so brilliant when he was well. I feel anger,
great anger, that this should be happening to him.
- Hetty
Grieving Styles: the Unique and the Universal
Grief involves a natural process of renewal and regeneration, rather than a mechanistic process of recharging
and repairing. It is a process that has a meaning and a timing of its own. It is a universal process that reflects
the unique circumstances of each person's life.
Each person has his or her own way of grieving - a grieving style - somewhere on the continuum from
intuitive grieving to instrumental grieving. No particular style is inherently better than another. Grieving
styles are learned, often in childhood, and can be modified.
Figure 3: Grieving Styles
Section 3
Sometimes there's little glimmers and he's back, and it's really nice. At other
times you just get hit with a tidal wave of emotion, it's like a tsunami.
- Ann
What I have found is that the things that tend to terrify us at the beginning
actually did not, in fact, terrify us when they happened; that we as caregivers
can handle most things if we put the right part of our brain to it.
- Robert
his section assists caregivers in developing a personal plan for coping with loss and grief. The process
may include a more positive acceptance of grief as a part of healing, and understanding that confusion,
Tindecision, lack of confidence and other uncomfortable feelings are normal. Learning how to moderate
feelings, exploring their deeper meaning, and identifying personal strengths are all part of effective 'griefwork'.
Working With Your Grief
'Griefwork' is a term that embraces the intellectual, emotional, physical and spiritual effort of adaptation that
takes place following a significant loss or change. For dementia caregivers, this is an ongoing process.
It is critical to recognize that griefwork is an active, not a passive process. Each person needs to figure out
what efforts best suit his or her grieving style in this active process of adaptation. Griefwork takes energy.
Griefwork takes courage.
l experiencing the responses to losses by clarifying the loss(es) and feeling the emotional pain, rather than
avoiding it. Paradoxically, healing happens when we allow ourselves to feel the hurt.
l doing whatever puts you in touch with your feelings and enables you to express them, in order to let the
air out of the balloon a little at a time;
l adjusting to a continually changing world;
l coming to a place of knowing this is the new reality, as it continues to unfold;
l coming to terms with your new self, as you undergo the transformative experience of taking on new roles
and losing the person you care for;
l allowing and expecting yourself to feel distressed, for part of the time. The balance between distress and
coping varies over weeks, days, and even within a day. Coping is more than just surviving. It is the ability
to constantly readjust to and manage the ever-changing demands of your situation, even when those
demands are sometimes more than you can deal with. No one copes perfectly 100% of the time!
Griefwork involves:
Successfully 'working through grief' does not mean that grief will no longer be experienced related to
the loss.
These next few pages are an opportunity for you to take an action as described in the preceding page. You will need
some paper or a notebook, writing materials and art supplies.
Creating simple visual art projects, such as collages, can be helpful in identifying and describing emotions.
Using your own photos or pictures from magazines, what images best express your feelings right now?
This is an exercise you can do again later, as things change.
What lies ahead?
Will I make it?
On the edge...
It's really possible to get yourself into a completely useless state, without realizing
it. Trying to stay awake 24 hours a day is just not possible in the long run.
- Robert
I become inactive, it sort of stops me in my tracks. I can't seem to accomplish
anything. I have to take a couple of days to sit back, and regroup.
- Mary Jean
ometimes, given the demands of caregiving, we resist acknowledging our physical and emotional
vulnerabilities. Caregiving takes energy and grieving takes energy. A wise caregiver will find ways to
Sreplenish energy on a regular basis to reduce the risk of burnout and serious stress-related illness. A wise
caregiver will find ways to balance the caring role with other aspects of life. By taking care of their own
physical and emotional health, despite limited time and resources, caregivers build resilience for the long haul.
Self-care is not selfish.
In this section, caregivers are encouraged to take their inner temperature to assess present levels of energy
and balance, and then to consider possibilities to nurture wellness and to restore balance.
If your own efforts to marshal your energy seem to fall short, consult your doctor. Be mindful that caregivers
are at risk for the medical condition of depression.
Taking Your Inner Temperature
Today, right now, what is your level of energy and balance? Put a mark on this scale:
Section 4
What might you be willing to take out of your suitcase
to make room for efforts to restore energy and balance?
Consider completing The Wellness Wheel to identify which elements might need some
Figure 4: Wellness Wheel
It's very important to get away, even overnight, or a weekend. Better if it's a week.
- Cindy