Jerome Schofferman, MD PSC patient Sally Holland, PhD Caregiver Caregivers PSC Partners June 21, 2019 Jerome Schofferman, MD PSC patient Sally Holland, PhD Caregiver

Caring for Someone You Care About Might be the most Challenging and the most Rewarding thing you do

Changes Occur Between Patient and Caregivers PSC is not a static disease Severity of Illness changes Amount of care changes and can wax and wane More support necessary as/if PSC progresses Psychological responses change Dealing with loss Dealing with not knowing

Caregivers On the Job Training Books and Manuals PSCP Web site Articles and Handouts (PSC web site) Conferences like this one or locally

Spouse / Partner / Other Caregivers PSC is a family illness Spouse or Partner and Children part of the illness as well New way of relating Life changing diagnosis Family might be an “extended family”..

Spouse / Partner / Other Caregivers Family might be an “extended family” Caregivers who are “exes” Friends as caregivers eg: Patients who are single

PSC Caregivers Some of the Common Fears Immediate fears “Should I call the doctor?” “Should I take him/her to emergency?” Fears about the future “What will happen to me when/if he or she dies?” “What will happen when he/she gets sicker?” Continuous fear “Am I doing a good job?”

Changes Occur Between Patient and Caregivers PSC is not a static disease Severity of Illness changes Amount of care changes and can wax and wane More support necessary as/if PSC progresses Psychological responses change Dealing with not knowing Adjusting to a new paradigm Dealing with loss

One dominant theme is loss PSC and Caregivers One dominant theme is loss Multiple losses Becomes very real Changes Patient-Caregiver relationship

Progression of PSC and Loss Grief Response: (chronic illness) Disbelief and Denial Guilt and ?Remorse Sadness Anxiety (about future) Acceptance Grief Response (bereavement) Denial Anger Bargaining Depression Acceptance Elizabeth Kubler Ross

Progression of PSC and Loss Grief Response Disbelief and Denial Guilt and ?Remorse Sadness Anxiety about future Acceptance Not linear To and Fro Patient and Spouse/Partner might be a different phases

Caregivers Coping: healthy or not Adaptive (active) Learning about illness Support groups Communicating about hard emotions Caregiver expressing his/her own needs Spiritual and religious support

Caregivers Coping: healthy or not Maladaptive (passive) Denying seriousness of the illness Emphasizing wishing and hoping Not changing potentially harmful behaviors Seeking miracle cures Feeling Helpless

Caregivers Self-Care Caregivers LOCAL Support group Exercise Sleep Get some help “Breaks” Communication Honest No secrets

Other Relationships and Situations Children Of patient with PSC who are patients themselves Patient who is primary family provider Caregiver who works and is primary family provider

Relationship with Physician The “professional caregiver” Very important and (too) often not discussed A good relationship Can help foster getting better Can help foster patient-caregiver relationship

Relationship with Physician Partnership Long-term Should be mutually rewarding Should instill confidence Patient and Caregivers should feel “cared for”

Care: definitions Care: the Noun The provision of what is necessary for the health, welfare, maintenance and protection of someone or yourself (that which is given) Serious attention applied to doing something correctly (e.g. taking care to do it right)

Care: definitions Care: the Verb Feel concern or interest; attach importance to something (caring for someone or something) Look after and provide for the needs of (the doctor has numerous patients to care for)

Care: definitions Care: the Verb Feel concern or interest; attach importance to something (caring for someone or something) Look after and provide for the needs of (the doctor has numerous patients to care for)

Care: definitions Care: the Noun Serious attention applied to doing something correctly (e.g. taking care to do it right)