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Jerome Schofferman, MD PSC patient Sally Holland, PhD Caregiver

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Presentation on theme: "Jerome Schofferman, MD PSC patient Sally Holland, PhD Caregiver"— Presentation transcript:

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

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

3 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

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

5 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”..

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

7 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?”

8 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

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

10 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

11 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

12 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

13 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

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

15 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

16 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

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

18

19 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)

20 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)

21 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)

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

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