1. a Workbook for Dementia Caregivers

8/12/2019 1. a Workbook for Dementia Caregivers

1/31

Understanding and Managing Loss and Grief

A Workbook for Dementia Caregivers


2/31

Acknowledgements

he Alzheimer Society of B.C. wishes to thank Betty Andersen, M.A., who initially developed thematerials 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, VancouverIsland Health Authority Seniors and Spiritual Health. We give special recognition to those family caregivers who courageously participated in the education seriesover 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 withTransitions series was funded by the Vancouver IslandHealth Authority Seniors and Spiritual Health and theAlzheimer Society's Grant to Improve Dementia Care inB.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 ofthe Coping with Transitions intervention on caregivers'grief, coping, empowerment and resilience. Theresearch 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 BoundISBN 978-0-9739243-2-9

MMS Vancouver Island Health AuthorityVictoria, British Columbia, Canada

2012


3/31

UNDERSTANDING AND MANAGING LOSS AND GRIEFA Workbook for Dementia Caregivers

his workbook, which includes more detailed information sheets and self-assessment exercises, helpscaregivers 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 ofdementia caregiving.

common reactions that are stirred up by the many ongoing losses that come with caring for someonewith dementia,

the importance of acknowledging and naming grief, and

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 theone I hear about most often is the loss of the sense of connectionwith the person who has dementia.

- Betty Andersen, Caregiver Grief Educator


4/31

INTRODUCTION TO TRANSITIONS:COMING TO TERMS WITH A LIFE YOU DIDN'T PLAN

The Effects of any Significant ChangeLife 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.

Ann

n this section, caregivers will learn about the stages of any significantchange 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 theperson with dementia can no longer live at home.

The information in this section helps caregivers identify their own feltlosses and name their own grief reactions, and suggests some short-term containment strategies to use while considering these challengingtopics.

It is challenging, indeed, to weather any of life's inevitable changes. Human beings have a built in ability toadjust 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.


5/31

Note that some especially significant change results in a transition that might better be described as aTRANSFORMATION - where the neutral zone is more chaotic, and the course of adjustment is more creativelycircuitous. 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, amultitude of changes in many aspects of one's life that will require adjustment. There are, and will be, avariety 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:

writing in a journal

becoming involved in artistic hobbies

following spiritual pursuits

listening to music

reading or writing poetry and other writings

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


6/31

Changes That Stir Up Grief

The dementia journey creates unique challenges andnumerous transitions: multiple stages, multiplesettings, many years duration, changes in directionoften precipitated by crises, many choices and ethicaldilemmas.

David Shenk described Alzheimer Disease as "deathnot by a thousand cuts but by a thousandsubtractions" . (The Forgetting , published in NewYork by Random House, 2001)

For most caregivers, there are significant periods ofincreased grief in response to challenging milestonesalong the dementia journey. These key milestonescan be referred to as pinchpoints.

Figure 2: Pinchpoints


7/31


8/31


9/31


10/31

DIMENSIONS OF GRIEF

Change = Loss = Grief Response

Section 2

a natural, inescapable part of being human, given that change is inevitable in life;

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;

experienced on a spectrum of intensity, from subtle to overwhelming;

holistic, experienced in all facets of one's being;

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 yearsduration, changes in direction often precipitated by crisis, many choices and ethical dilemmas. The veryexperience 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 evokesa form of grief unlike any other. As if this anguish were not enough, few dementiacaregivers are aware that what they are experiencing is indeed grief. This lack ofknowledge that grief is a natural, normal and universal experience of dementiacaregivers can result in added and unnecessary distress.

It would be like a mother-to-be going through labour all alone and with no previousinformation about what to expect in childbirth. A woman with the knowledge of what isto be expected in childbirth still endures discomfort and pain, but has the reassurancethat others have experienced this normal process. The mom-to-be that lacks thisknowledge 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 trajectoryof 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 copesuccessfully with past losses.


11/31

The grief experienced by a family caregiver along the dementia journey can have manylayers, which include:

Ambiguous grief: grief that has no clear starting point and no clear ending point (no markers). Theperson with dementia is physically present, but psychologically changed: the goodbye withoutleaving . 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, progressivecognitive decline of a family member is a constant reminder of 'what is' and 'what was' and 'what washoped 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 toall losses already experienced within the new reality of illness. That is, continually adapting to ongoinglosses. 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 justdon't know where the end point is.

- Mary Jean

It's a bit like watching a wonderful lighted sculpture where thelights are going out one at a time.

- Tim

I have one sister who does not acknowledge him at allit makesit so much harder for me, because it makes me feel, am I

supposed to be grieving yet, because he's still here.

- Cindy


12/31

The grief experienced by a family caregiver along the dementia journey can have manycomponents, which include:

Grief for personal losses - what the caregiver gives up to function in the caregiver role

Worry and isolation, which represents a pervasive sense of uncertainty regarding how things will turnout, 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 finitelosses in the past.

Grief and loss can be experienced quite differently among various family members. Each caregiver willexperience loss and grief (with its various layers and components) in a unique and individual way.

Heartfelt sadness for the losses of the family member who has the dementia, and longing for thingsto 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


13/31

Grieving Styles: the Unique and the Universal

Grief involves a natural process of renewal and regeneration, rather than a mechanistic process of rechargingand repairing. It is a process that has a meaning and a timing of its own. It is a universal process that reflectsthe 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. Grievingstyles are learned, often in childhood, and can be modified.

Figure 3: Grieving Styles


14/31


15/31


16/31


17/31


18/31

LIVING WITH GRIEFSection 3

Sometimes there's little glimmers and he's back, and it's really nice. At othertimes 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 beginningactually did not, in fact, terrify us when they happened; that we as caregiverscan 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 processmay 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 moderatefeelings, 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 thattakes 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 outwhat efforts best suit his or her grieving style in this active process of adaptation. Griefwork takes energy.Griefwork takes courage.

experiencing the responses to losses by clarifying the loss(es) and feeling the emotional pain, rather thanavoiding it. Paradoxically, healing happens when we allow ourselves to feel the hurt.

doing whatever puts you in touch with your feelings and enables you to express them, in order to let theair out of the balloon a little at a time;

adjusting to a continually changing world;

coming to a place of knowing this is the new reality, as it continues to unfold;

coming to terms with your new self, as you undergo the transformative experience of taking on new rolesand losing the person you care for;

allowing and expecting yourself to feel distressed, for part of the time. The balance between distress andcoping varies over weeks, days, and even within a day. Coping is more than just surviving. It is the abilityto constantly readjust to and manage the ever-changing demands of your situation, even when thosedemands 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 tothe loss.


19/31


20/31


21/31

These next few pages are an opportunity for you to take an action as described in the preceding page. You will needsome paper or a notebook, writing materials and art supplies.


22/31

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?


23/31

On the edge...

Ahhhh!!!

Stress

Peace


24/31


25/31

It's really possible to get yourself into a completely useless state, without realizingit. 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 accomplishanything. 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 emotionalvulnerabilities. Caregiving takes energy and grieving takes energy. A wise caregiver will find ways toSreplenish energy on a regular basis to reduce the risk of burnout and serious stress-related illness. A wisecaregiver 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 energyand 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 caregiversare at risk for the medical condition of depression.

Taking Your Inner TemperatureToday, right now, what is your level of energy and balance? Put a mark on this scale:

MAINTAINING SELF AND ENHANCING RESILIENCEFOR THE CAREGIVING MARATHON

Section 4


26/31


27/31


28/31

What might you be willing to take out of your suitcaseto make room for efforts to restore energy and balance?


29/31

Consider completing The Wellness Wheel to identify which elements might need someattention:

31

Figure 4: Wellness Wheel


30/31

It's very important to get away, even overnight, or a weekend. Better if it's a week.- Cindy


31/31

Documents

1. a Workbook for Dementia Caregivers