Caregivers: Are you ready for this? Who’s in charge? courstesy Wikimedia Commons.

Dr. Wayne Baker welcomes Heather Jose, a writer and speaker on improving patient experiences. She also is a teacher, healthcare provider and activist with a website called Go Beyond Treatment.
Here is Heather’s second column this week …

Here’s a simple question: Who’s in charge?

You are the patient; I am the caregiver. I take care of you. But, we might have that backwards! Inviting patients to guide their own care provides much-needed control when dealing with an illness or condition that often times sends their lives spinning out of control.

I have been the patient. A lot!!! Since I was diagnosed with stage IV breast cancer in 1998 I have spent many hours being cared for. I have learned a few things. If you are the patient, these tips may be helpful in coordinating a strong network.

  1. Keep the people who care about you informed—without draining yourself. I accomplished this through letters and emails. Conversation is good, but oftentimes leads to situations where you end up supporting the wrong person. You might even want to set up your email list before treatment begins, if you have that option, to simplify sending updates.
  2. Be specific. People will offer to help, but the aid is almost always worthless unless the person knows when, how and what they can do to be helpful. For instance, we circulated a sign-up sheet for drivers to and from radiation at our church one day.  
  3. Have people do things that they are good at. The tasks varied greatly, from keeping my dog groomed and up to date on all his shots, to spending hours doing research. There were people who cleaned before I came home from my stem-cell transplant and even a chef who would bring me a smoothie while I was in the hospital. These tasks were all in their comfort zones.

NOW, it’s your turn! What tips can you add to this list?

What have you learned that “works”?

REMEMBER: “Caregiving” can encompass many situations and ages with a wide range of intellectual and physical abilities—and a huge range of services and time involved. Some people need assistance for a single season—others need it for years. Some need 24/7 care; others need lighter assistance perhaps once a week. I welcome your ideas—and more importantly our readers will welcome your ideas—wherever you fall in the big spectrum of care.

Please comment below! published at, an online experiment in civil dialogue on American values.

Heather Jose is the author of the book Letters to Sydney: Every Day I am Killing Cancer, co-author of The Healing Agreement—and a contributing writer for the Breast Cancer Wellness Magazine, Coping Magazine and Thrive.

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