Critical Mass – Some Random Thoughts

As the journey continues with my husband’s cancer and grueling treatments, there are moments when I am completely stopped in my tracks and reminded of his chronic cancer care over the past decade. Our children are now ages 11, 15 and 18. Recall, cancer entered our family three weeks before our third child was born and has been actively present since.

Yesterday, I was at the UC Davis Comprehensive Cancer Center for a work related activity – a symposium for nutrition majors from area colleges about dietetic internship programs in California. It was one of the few times I’ve been to a cancer center that didn’t involve a doctor appointment – Fred Hutchinson (Seattle), Stanford (Palo Alto), and MD Anderson (Houston), some of the best cancer hospitals in the world – I know them each well.

As I approached the receptionist she motioned gently that the auditorium was down the hall. Thank you, but not what I wanted to know. I had already checked out the room where we were meeting, and was now on a quest to explore the rest of the Center.

Comprehensive Cancer Center.  I find the relatively new designation given to certain qualifying cancer hospitals, by the National Cancer Institute (NCI), to be a bit misleading.  At the cancer centers I’ve visited, I make it a point to explore the options for families of cancer patients, especially those in our situation, with minor children. Generally, resources for families with a parent with cancer and minor children are lacking even at the Comprehensive centers.  But I always ask, nonetheless.

“What do you offer for family members with young children helping a parent struggling with cancer?” “Oh, you mean caregiver support groups.” For some reason, I have grown to dislike the word caregiver. I’m not able to fully articulate just why, yet. Care giving.  Care taking. We are all caregivers and caretakers are we not – moms, dads, aunts, uncles, teachers, nurses – the list goes on. Maybe the term is too generic, overused, and non-descriptive for my liking.  “Sure, the caregiver support group,” I replied.

“We have toll-free conference calls for caregivers.” And she hands me a card, which reads, “Recent studies show that caregivers, especially men caring for wives with breast cancer, suffer from increased anxiety, fatigue, stress and other health risks.” The card goes on to describe how one researcher refers to caregivers as “invisible patients – they are ignored and not included as respected members of the healthcare team – and they suffer from it long after the loved one is disease-free.”  That’s novel I thought. A comprehensive cancer center and they offer a toll-free support group for caregivers.  “Can you call anytime?” I asked. “No, they hold one meeting a month on the first Tuesday from 11-12 p.m. After your first meeting, you get a free book sent to you written by one of our physicians.” She handed me another card about the book – How to Heal: A Guide for Caregivers by Jeff Kane, MD.  The book sounded hopeful.

Family communication experts have documented time and again that when a parent experiences a major and/or chronic illness, the nature of the family life is dramatically altered.  The well parent and children have to assume a greater responsibility in a caregiving role, family leisure activities are often restricted, and the health of the ill parent can become a dominant theme of family interactions.

Even though these family adjustments are often a necessary family response to the stress of a parent’s illness, they can come with serious repercussions.  The dominating theme of a parent’s illness often means that the children in the family do not get as much attention as they would otherwise.  Depending on the intensity and duration of the illness, the opportunities for a husband and wife to spend time by themselves may be entirely eliminated. Likewise, the opportunities to attend to the maintenance of their marriage may be greatly reduced, as their interactions and dialog may be largely centered on the care of the ill parent.

I was immediately reminded of a time last year when my daughter and I were volunteering at the Leukemia Lymphoma Society’s Light the Night Walk.  I asked the director of nursing from a bone marrow transplant program in another northern California hospital system if she knew of local support groups for young families struggling to care for one of the children’s parents with cancer.  She said she did not and our conversation ended with her words resonating like the repeating lyric in an irritating song, “I guess your situation hasn’t yet reached critical mass,” and with that she resumed handing out brochures to potential patients about her hospital’s bone marrow transplant program for blood cancers.

Critical mass. The National Cancer Institute estimates that 24% of adults with cancer are parenting a child younger than 18 years. This translates to an estimated 3.3 million minor children in the United States who are currently living with a parent newly diagnosed or having been treated for cancer (Weaver, et al). Surprisingly, despite the number of families affected there is little information about their needs and outcomes.  Shouldn’t this be a focus of our NCI designated Comprehensive Cancer Centers? I guess it depends on one’s perspective. Maybe we haven’t yet reached critical mass.

Returning to my meeting in a standing room filled with 150 eager college seniors I was struck by their enthusiasm. I was once one of them, eager to continue my education to be able to help people prevent and manage disease through a nutritious diet. Yes, prevent disease. The irony is not lost on me.

Reference: Weaver KE, Rowland JH, Alfano CM, McNeel TS. Parental cancer and the family: a population—based estimate of the number of US cancer survivors residing with their minor children. Cancer. 2010 Sep 15;116(18):4395-401.

Copyright © 2013 Jeannie Moloo. All Rights Reserved.

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