Saturday, February 16, 2013

Caregivers Need Support Too

Just before I was diagnosed with cancer in 2009, I observed the 11-year anniversary of the cancer death of a dear friend and 'significant other' (the word 'boyfriend' never really fit since we were adults).  David was a vibrant, athletic, brilliant, outgoing, and passionate 44 year old who inspired just about everyone he met.  He inspired me so much when we were first colleagues and later became friends, because he was living life so fully all of the time.  By the time he was 40 he had already changed careers several times to follow his dreams of trying different paths.  He was a sheriff's deputy, an attorney, an investment broker, just to name a few.  David dabbled in speed (ice) skating, running, basketball, even gardening!  His personality was magnetic. He remembered names and events and everyone that he interacted with felt like they were the only person in sight because he made everyone feel special. Even while in his third year of perpetual chemotherapy treatment for stage 4 cancer, David was busy making everyone else feel good. 

During a brief visit with him the winter of 1997, I was so moved by David's spirit and love for life that I left my life in Boston and moved across the country to be near him in his final months of life.  I had no idea what I was getting myself into as I took on the role as a member of his caregiver team but I didn't care.  Back then, the internet was pretty new and there wasn't a tremendous amount of information available the way there is today.  Once in California,  I found an online support message board for cancer caregivers. A God-send since I quickly learned that the role of caregiver is as stressful and frightening as the role of patient.

Caregivers (family members, friends, neighbors) take on their role suddenly, unexpectedly, involuntarily, and with no training. In today's typical outpatient cancer treatment delivery model, the caregiver is the traffic cop for patients, navigating doctors' visits and treatment plans as an advocate and often home "nurse", serving as the patient's gatekeeper managing social visitors and helpers, performing and delegating household chores, interpreting and confronting insurance processes and decisions, and much more.  All the while, they're faced with their own worries, fears, and frustrations, feeling helpless and unequipped for their new job in addition to juggling their own personal and professional obligations.  Even secondary caregivers - helpers, friends, and family members on the periphery - struggle with how to talk to or help their loved one after a cancer diagnosis. It's a tremendous stressor and often caregivers' needs are overlooked.

Caregivers suffer profoundly - emotionally and physically.  If you are a caregiver, your fears, pain, worry and frustration are real and valid. You need to be cared for too, even if you don't think so.  Not even the patient can understand how a caregiver suffers, unless they've been in that role themselves.

Since I've been both the caregiver and the patient I'll be posting about some topics from both perspectives over the next few months. I hope to provide helpful information to demonstrate to caregivers and patients alike that both roles are stressful and difficult but there are lots of resources for both. Meantime, if you're a patient please remember that your caregivers are hurting too and sometimes they need an extra hug and a thank-you, just like you need some extra grace and love during this stressful time.

I welcome your input, suggestions and questions along the way. Do you have specific questions you'd like me to answer? Would you like to share your story as a caregiver or a patient as a guest on my blog? Email me at

1 comment:

  1. parkinsons caregivers -The Caregiver Space is a non-profit organization committed to provide help and support for Parkinsons Caregivers