EXPLORING CAREGIVER GRIEF AND LOSS: Touchstones for Hope and Transformation Alan D. Wolfelt, PhD, CT Center for Loss and Life Transition Learning Objectives: 1. Describe the distinction between grief and mourning,. 2. Define the ripple effect of losses that come with Alzheimer s. 3. Identify the central needs of mourning. DISCLOSURE OF COMMERCIAL SUPPORT Alan D. Wolfelt, PhD, CT does not have a significant financial interest or other relationship with manufacturer(s) of commercial product(s) and /or provider(s) of commercial services discussed in this presentation. 1
ARIZONA GERIATRIC SOCIETY EXPLORING CAREGIVER GRIEF AND LOSS: TOUCHSTONES FOR HOPE AND TRANSFORMATION OCTOBER 27, 2012 Grief of the Caregiver To be torn apart To have special needs To be robbed Mourn the diagnosis and loss of SELF ( part of me died too ) SECURITY ( world doesn t feel as safe ) MEANING ( experience anhedonia ) 2
REALITY: Symptoms of grief -anhedonia, lethargy, memory loss, psycho-motor retardation, poly-phasic behavior... naturally slow the caregiver down! Potential Additional Losses.. The relationship that was The personal closeness The understanding you had The activities and interactions you had The loss of sense of normal IS A RIPPLE EFFECT Often experience buck-up messages Be grateful you still have your husband Carry on Keep your chin up God wouldn t give you anything Feeling sorry for yourself isn t going Be glad you have had her as long Well, at least he has lived to be 72 3
Because many caregivers are unable to SUSPEND/SLOW DOWN/TURN INWARD they often lose their way! RESULT: Lack of recognition of the need to HONOR one s grief and mourning! HONORING: remembering the value of, cherishing and holding dear. 4
GRIEF: internal thoughts and feelings experienced internal response to loss MOURNING: outward expression of grief grief gone public shared social response to loss Authentic mourning results in PERTURBATION: = the capacity to experience change and movement! Feeling: Indo-European root; means touch. 5
So, it is experiencing your feelings that you activate your capacity to be TOUCHED and CHANGED by experiences you encounter along life s path. REALITY: Feelings have one ambition in life to be felt. Emotions want motion. When we deny, inhibit, defend against emotions, our pain lasts longer. Mourning transforms grief into courage, hope, and love. The integration of grief waits on welcome, not on time. 6
POTENTIAL DIMENSIONS OF RESPONSE In every heart there is an inner room, where we can hold our greatest treasures and our deepest pain. EVASION From the new reality ENCOUNTER With the new reality RECONCILIATION To the new reality To experience RECONCILIATION requires that we descend, not transcend. SPECIAL NEEDS IN FIVE DOMAINS Physical-lethargy, sleep, dehydration Cognitive-memory loss, polyphasic Emotional-roller-coaster of feelings Social-relationship energy loss, friends Spiritual-will to live, why questions 7
Potential Dimensions of Response Shock, Numbness, Disbelief Disorganization, Confusion, Searching Anxiety, Panic, Fear Physiological Changes Explosive Emotions Guilt and Regret Loss, Emptiness, Sadness Relief, Release Reconciliation, Healing Potential Dimensions of Response Shock, Numbness, Disbelief Disorganization, Confusion, Searching Anxiety, Panic, Fear Physiological Changes Explosive Emotions Guilt and Regret Loss, Emptiness, Sadness Relief, Release Reconciliation, Healing Potential Dimensions of Response Shock, Numbness, Disbelief Disorganization, Confusion, Searching Anxiety, Panic, Fear Physiological Changes Explosive Emotions Guilt and Regret Loss, Emptiness, Sadness Relief, Release Reconciliation, Healing 8
Potential Dimensions of Response Shock, Numbness, Disbelief Disorganization, Confusion, Searching Anxiety, Panic, Fear Physiological Changes Explosive Emotions Guilt and Regret Loss, Emptiness, Sadness Relief, Release Reconciliation, Healing Potential Dimensions of Response Shock, Numbness, Disbelief Disorganization, Confusion, Searching Anxiety, Panic, Fear Physiological Changes Explosive Emotions Guilt and Regret Loss, Emptiness, Sadness Relief, Release Reconciliation, Healing Potential Dimensions of Response Shock, Numbness, Disbelief Disorganization, Confusion, Searching Anxiety, Panic, Fear Physiological Changes Explosive Emotions Guilt and Regret Loss, Emptiness, Sadness Relief, Release Reconciliation, Healing 9
Potential Dimensions of Response Shock, Numbness, Disbelief Disorganization, Confusion, Searching Anxiety, Panic, Fear Physiological Changes Explosive Emotions Guilt and Regret Loss, Emptiness, Sadness Relief, Release Reconciliation, Healing Potential Dimensions of Response Shock, Numbness, Disbelief Disorganization, Confusion, Searching Anxiety, Panic, Fear Physiological Changes Explosive Emotions Guilt and Regret Loss, Emptiness, Sadness Relief, Release Reconciliation, Healing Potential Dimensions of Response Shock, Numbness, Disbelief Disorganization, Confusion, Searching Anxiety, Panic, Fear Physiological Changes Explosive Emotions Guilt and Regret Loss, Emptiness, Sadness Relief, Release Reconciliation, Integration 10
To suppress the grief, the pain, is to condemn oneself to a living death. CENTRAL RECONCILIATION NEEDS OF MOURNING While grief is an intensely personal, unique experience, we must all YIELD to a set of basic human needs to integrate losses into our lives. 11
Mourning Need 1 Acknowledge the Reality of the Diagnosis (re-story your life) Mourning Need 2 Embrace the Pain of the Loss (five domains) Mourning Need 3 Shift the Relationship (what was to what is) 12
Mourning Need 4 Develop a New Self-Identity (Who am I?) Mourning Need 5 Search for Meaning (those who do not question, do not find) Mourning Need 6 Ongoing Support Now and Always (transformative experience demands) 13
SIX CENTRAL NEEDS OF MOURNING Acknowledge the reality of the diagnosis Embrace the pain of the loss Shift the relationship Develop a new self-identity Search for meaning Receive ongoing support-now and always SELF-CARE ESSENTIALS When we admit our vulnerability, we include others. If we deny it, we shut them out. SEEK AND ACCEPT SUPPORT Remember rule of thirds Let people know what you need from them Mourning: shared response to loss 14
BE SELF-COMPASSIONATE Personal grace, be patient with yourself You mourn in doses Remember-No rewards for speed! REST Most people- lethargy of grief Sleep disturbance common Take three naps a day HYDRATION Risk for dehydration Avoid alcohol, caffeine Drink six to eight glasses per day 15
EXERCISE Do not over-exercise 20-30 minute walk each day Locate a walking companion to encourage you! EMBRACE FAITH/SPIRITUALTY Express in ways meaningful to you Faith and mourning are not mutually exclusive Remember- why - how relationship RECOGNIZE SOUL WORK/SPIRIT WORK Downward movement in the psyche Prior to any upward movement. Dark before light- Hello before goodbye. 16
RECOGNIZE TRANSFORMATION Literally means an entire change in form. You are a different person. new normal not old normal TRUTH: Our capacity to give and receive love is ultimately what defines us. Nothing in our lives matters as much as how we have loved one another. If we allow ourselves the grace that comes with love we must allow ourselves the grace that is required to mourn. 17
WITHOUT DOUBT The capacity to love, requires the necessity to mourn! GENTLE REMINDER The experience of grief is only felt when someone of great value, purpose, and meaning has been a part of your life. To HONOR your grief is not self-destructive or harmful, it is life-sustaining and life giving it ultimately leads you back to love again love is both the cause and the antidote. 18
TRUTH: To deny the significance of mourning would be to believe that there is something wrong about loving. Just as our greatest gift is our capacity to give and receive love, it is a great gift when we can openly mourn our life losses. When you are sorrowful, look again in your heart, and you shall see that in truth you are weeping for that which has been your delight. -Kahlil Gibran 19