Cure JM Foundation 2017 Conference Breakout Sessions

Coping for Caregivers 101: Presented by Suzanne Edison, MA, MFA

Suzanne Edison leading breakout session on coping for caregivers.Suzanne is a therapist who teaches clinics on coping and healing for caregivers. She is a member of the Cure JM Leadership Council and is the International Representative for Cure JM’s Family Support Network.

Suzanne is also the President of Cure JM’s Pacific Northwest Chapter, a member of Cure JM’s research committee, and mom to a teen with JDM.

Below is a recording of the session:

In this session, we looked at coping skills and how to adapt family life when a chronic illness is present.  We also talked about resiliency -- the resilient family is a system and that helps the family and the child cope. 

A few key things for families to keep in mind: 

  1. Chronic illness is a traumatic experience not just for the patient but often times for the family and primary caregiver.
    • Trauma affects our brain, our nervous system and triggers our flight/fight/freeze responses
    • This sets off stress hormones in our bodies, excess cortisol, which diminishes our capacity to think clearly and act effectively since we are just REACTING to those stressful stimuli without the capacity to evaluate options and directions.
  2. As caregivers, we need to recognize the signs of Traumatic Stress in ourselves: 
    • Unremitting grief, anger, depression, irritability, sleep disruption, appetite changes are a few
  3. Taking care of ourselves is paramount to being a better caregiver for your child/grandchild
    • Find some time for yourself: a bath at night, watch a movie, read a book, get a massage if you can 
    • Go for a walk or do something physical to help regulate your emotions and excess cortisol which is released when stressed
    • Call a friend who understands and talk
    • Write out your feelings before you go to bed, keep a notebook by your bed. Writing helps get the thinking and feeling out of your mind/body so you can relax.
    • Do something creative that helps refill your “tank” of energy
    • Ask for help
    • Surround yourself with people who are supportive. If family isn’t, then find others who understand your situation, a support group nearby or online.
    • Find a therapist, or family therapist
  4. If you are a grandparent:
    • ASK what you can do to help, don’t make assumptions.
    • If the parents don’t know what they need here are a couple of suggestions: bring a meal, give the parents a break of time, go with the child and parent to an appointment 
    • Educate yourself on the disease.
    • BELIEVE the parents and support their decisions.
    • If you hear them questioning the doctors’ approach suggest they get a second or third opinion, but don’t undermine their decisions or discount their concerns
  5. I have a list of articles on my Resources page of my website.

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