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During the CLL Research Consortium Patient Empowerment and Education Conference held in San Diego in April 2015, Kyle Cleveland, caregiver to Laura Cleveland (CLL patient since 1997) entertained us while providing practical, down-to-earth advice to the other caregivers in the audience.
Kyle’s debut as a caregiver began with Laura’s diagnosis in 1997 while pregnant with their son Alex. He describes their journey from Watch & Wait, to increasing symptoms, and then visiting and moving on from 5 different community hematologist/oncologists each of whom had widely varying prognostic predictions. Enter the Internet where Laura found Michael Keating at MD Anderson Cancer Center and joined a Phase II trial studying RFC (rituximab, fludarabine, cyclophosphamide) the day after they arrived in Houston.
Kyle continues to describe their journey with Laura’s chronic lymphocytic leukemia, but provided this advice for caregivers:
- Be a good listener. Encourage the patient to open up and practice active listening. Patients have a lot on their minds and talk therapy is good.
- Be a good talker. Encourage discussions about things NOT related to CLL. Bring levity to life in an effort to avoid spiraling down into the pit of depression
- Be an encourager. Say “It’s gonna be ok” whether or not it’s true. The patient is just as afraid as you are. You’re both afraid of the unknown. Thinking positively helps
- Have a back–up plan. Have a plan in place BEFORE something happens. Accept help from family and friends. As Kyle described, the caregiver could become a care receiver, but the patient still needs support.
- It’s not about YOU! As much as the patient’s diagnosis has upset your life, it has upset the patient’s life AND they have to deal with the cancer on top of that.
Enjoy Kyle’s lively discussion as he describes the ups and downs of life as a CLL caregiver.
Betsy Dennison, RN 11/5/15