Fading While They Fade Away: The Grief Journey of Dementia Caregivers Larry Dawalt, M.Div., CT, CTSS Senior Director of Spiritual and Grief Care Services 704-375-0100 www.hpccr.org

Adult-Child Caregivers (mild) Denial & Avoidance Refusal to Acknowledge Future Implication Focus –Exclusively on Present Very Task Oriented & Intellectualized Emphasis on Maintaining Current Competencies

Adult-Child Caregivers (mild) Avoidance of Loss-Related Discussion Unless Pushed Losses are self focused (e.g., personal freedom) Minimization/Avoidance of Feelings Struggle to Contain All Grief

Predominant Feelings Surface = None Underlying = Fear, helplessness, anger, jealousy Holding on to the present Little manifestation of grief No talk of nursing home placement

Spouse Caregivers (mild) Lack of Denial & Avoidance Reality Oriented with Regard to Future Focus on Present but Projecting… out into the Future Acceptance of Current Competencies & Changes

Spouse Caregivers (mild) Recognition & Acknowledgement of Losses Losses Conjoint-Focused (Loss of Companionship) Openly Sad Openly Experiencing Grief

Predominant Feelings Sadness Little resentment, jealousy or fear Allowance for ‘slipping away’ Anticipation of Escalation in Grief Avoidance of Nursing Home Placement

Adult-Child (moderate) Rapid transition to Reality of Care Burden Greater Than Expected Emotions are Raw Predominant = frustration, anger at peak Secondary = guilt, wishing parent would die Grief focused on Self Efforts to maintain normalcy have vanished Secondary – Guilt, wishing parent would die, FATALISM, PINING SADNESS FOR WHAT WAS

Adult-Child (moderate) Loss focused on Other (parent) Beginning to talk of Nursing Home Placement Anticipatory Grief = Expectation of Continued Grief with Some Relief after Death of Parent New Emotion – Fear of Genetic Transmission Beginning to talk of Nursing Home Placement - RELUCTANCE AND DREAD

Spouse (moderate) Smooth Transition to Reality of Care Increasing Burden Accepted with Dignity & Responsibility Emotions are deeply felt but not raw Predominant = sadness Secondary = compassion, empathy, mild frustration

Spouse (moderate) Grief Focus on the Other… how are they feeling- are they feeling… Maintaining the relationship becomes important Normalcy vanished early on Loss Focused on Self – Aloneness Thought of Nursing Home Brings Increased Sense of Loss, Grief and Guilt Anticipatory Grief = now…then Anticipatory Grief = BELIEF THAT GRIEF IS AT AN APEX AND DEATH WILL BRING RELIEF

Adult-Child (severe) Burden Lifted Primarily by Nursing Home Placement NH Stops Being a Major Theme New Theme of Interpersonal Regret Losses: Lost Relationship, Lost Opportunities Nursing Home Placement produces Initial feelings of Turmoil and Guilt; Secondary feelings of Relief; Broadened Philosophical Perspective

Adult-Child (severe) Emotional Shift From Earlier Stages – Raw to Reflective Predominant = Sadness, longing, loneliness, resignation, finalized loss Secondary = Anger, frustration Emotional Shift FROM EARLIER STAGES – RAW TO REFLECTIVE

Adult-Child (severe) Focus on Both Parents(Lost Opportunities) Grief Expressed from start to finish –Across Time to this Stage- Memories of Laughter and Tears Anticipatory Grief – Expectation that Death will bring Relief

Spouse (severe) Burden of Care Eased by NH Placement New Burden of Caring for Self Losses: Identity as Member of a Couple, Distance from Family and Friends Nursing Home Placement produces: Initial Feelings of Relief; Secondary Feelings of Concern for Self

Spouse (severe) Increase in Emotional Intensity and Rawness Predominant = Uncertainty about future, confusion, frustration, aloneness Secondary = Anger about situation and non-caring of others

Spouse (severe) Focus on Self – Building a New Single Identity Grief Expressed as both Bitterness and Sadness Anticipatory Grief – Less Sure that Death will Bring Relief

Multidimensionality of Anticipatory Grief Psychological Interpersonal Socio-cultural Psychological – What are the coping abilities, beliefs, feelings, psychological characteristics of the bereaved? Interpersonal – What is the type of relationship being grieved, the style of responding to the situation, the type of support they receive? Social cultural – What are the norms, roles, and rituals available to the bereaved?

Preparatory & Anticipatory Grief Two Perspectives The Dying Person- Preparatory Grief All Others Who Care About The Dying Person- Anticipatory Grief

Anticipatory Grief Three Time Foci The Past The Present The Future The Past That Was Had/Shared and can never be regained The Present – the Losses That Occur and are experienced as a diminution or outright end of capabilities, the ongoing experiences of erosion The future – the losses of the anticipated death and such related losses as loneliness and events that will not be shared.

Psychological Dimension Dimensions of Grief Psychological Dimension Characteristics of the illness and type of death with which the griever must contend Characteristics of the dying individual’s knowledge and response to the illness and ultimate death Illness and Type of Death the Griever Must Contend Griever’s specific fears about illness, dying and death “ previous experience with and personal expectations about illness, dying and death “ knowledge about illness The personal meaning of the specific illness to the griever Type, frequency, and intensity of the griever’s involvement in the dying person’s care and treatment Griever’s perception of the preventability of the illness The length of the illness The nature of the illness The quality of the dying person’s life after the diagnosis The location of the dying person The griever’s evaluation of the care, treatment, an resources that the dying individual is provided and to which he has or she has access Characteristics of the dying individual’s knowledge ad response to the illness and ultimate death The dying individual’s subjective experience of the illness (course of illness, treatment regimen and side effects, amount of pain, etc. The dying individual’s attitude toward and response to the illness and ant its ramifications (physically, emotionally, cognitively, etc) The personal meaning of the specific illness and its location to the dying individual The dying individual’s feelings, fears, and expectations about the illness, dying and death The dying individual’s degree of knowledge of the illness and its ramifications The dying individual’s feelings of being supported, understood and helped by others The dying individual’s will to live

Interpersonal Dimension Characteristics of the family and its members’ responses to the illness and impending death Family constellation Specific characteristics of the family system Family awareness and understanding of illness Degree of strain of the illness on family Family Constellation Make up of family, developmental stage, specific roles of family members and appropriateness of roles Specific characteristics of the family system (degree of flexibility, communication style, roles, norms, expectations, values, beliefs, etc) Family awareness and understanding of illness and its implication

Socio-cultural Dimension Quality and quantity of the griever’s social support system The griever’s and patient’s financial resources and their expected stability Degree of access to quality medical treatment and caregiving intervention for the dying individual and griever Family and community rituals for illness, dying and death Quality and quantity of the griever’s social support system Degree of acceptance, support, security, and assistance of its members, quality of communication with its members, an degree of access the griever has to it during the illness)

The Needs of Caregivers Respite – It’s Not an Option You deserve a break today Front-Burner Concerns A sense of identity A sense of dignity Control of Pain and Suffering Respect and Love

The Needs of Caregivers The Emotional Needs of a Caregiver Presence Conversation A Listening Ear Tears Touch Laughter

The Needs of Caregivers Energy and more Energy Where does energy come from? Where does energy go? How do you get more energy?

Specific Support Support Groups Importance Benefits

Specific Support Web Support In different rooms together

Specific Support Professional and Non-Professional Support Counselors Religious professionals Organizational support Porch Therapy

Specific Support Keeping In Touch Cards Letters                                      

Specific Support Emptying Pages The Artist’s Way

Another chapter of Life