PSC Caregivers Breakout Session

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Presentation transcript:

PSC Caregivers Breakout Session Moderator Jerome Schofferman Panelists Mary Vyas Jane Weyer Sheila Finnerty Wes Hendrix

Care: definitions 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 (taking care to do it right)

Care: definitions 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)

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

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

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

Changes Occur Between Patient and Caregivers PSC is not a static disease Stage and severity of Illness changes Amount of care changes and can wax and wane More support necessary as/if PSC progresses Psychological reactions change

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

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 (not only from Dr. Google) Support groups Maladaptive (passive)…

Caregivers Coping: healthy or not Adaptive (active) Maladaptive (passive) Deny the seriousness of the illness Emphasize wishing and hoping to get better Do not change potentially harmful behaviors Seek 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”

“In theory there is no difference between theory and practice” Caregivers On the Job Training Books and Manuals Web sites Articles and Handouts Conferences “In theory there is no difference between theory and practice” In practice there is.” Yogi Berra