Yikes! The good news here, if there is any, is that the word “cancer” does not need to strike the terror in us that it used to. Many forms are, of course, very treatable, and across the spectrum of cancer diagnoses, there is room for hope and optimism. However, in those heartbreaking scenarios where recovery and cure are not in the cards, we need to develop language around what is happening that informs but does not terrify. How exactly do we do that?
Step One: Take inventory.
How much do the children already know? Has the word cancer come up in conversation? If they have heard you in the car, on the phone, or in conversation at home, they know more than you think they do. In the absence of information, children may “fill in the blanks” from their collective experience and imagination. They could create an extreme and unlikely scenario or minimize what they see, contributing to their angst.
Step Two: Identify the difference between a cold, the flu, strep throat, and a serious life-limiting illness.
In my decades of hospice work, I learned that even teens and young adults could have significant anxiety about “how sick is sick.” Identify the illness: “Grampa smoked cigarettes for most of his life. He tried to stop many times, but the damage was done. He is now struggling with lung cancer, and his treatment worked in the beginning. He was getting a little better, but the treatment isn’t working anymore.”
You are creating a space of safety for your children by clearly identifying where this illness came from (although we may not always know), helping them not to fear that everyone and anyone is a potential victim. They know that sickness comes and goes. They “catch” something, and then they recover. Make a special point to clarify that there is sickness that we recover from and, much less commonly, sickness from which we cannot heal.
Step Three: Know your audience.
What are the children’s ages and developmental levels?
Does your child have issues with anxiety? How does your child respond to stress and fear?
What is the relationship with the grandparent? Do they live in California and see the kids once a year or so, or do they live next door and are a part of your children’s daily lives?
Have the kids visited during hospitalizations? Have they witnessed the impact of the illness?
Have you had preliminary conversations with them about “sickness?”
Consider how your child processes difficult information in general. Soft stepping may be a temptation here.
While the truth should be told very tenderly and carefully, not being honest may lead your child to feel lied to. If you present a picture that is more hopeful and less honest, the death will come as more of a shock and may have a damaging impact. If you have been sharing modified truths about Grampa’s condition, ask some questions about their level of understanding. “Do you think Grampa is getting better? If so, tell me what you see that makes you think that. Do you believe Grampa is getting sicker? If so…tell me what you see.”
Step Four: Empowerment.
Since we can’t change Grampa’s health, what can we do for him? This introduces the “quality of life” concept. Depending on age and development, children’s involvement in the end-of-life process can be profoundly important for Grampa and everyone in the family.
Provide the canvas and the opportunity for your child to engage. “What do you think would make Grampa happy today? A game of checkers, a hand-made card, flowers, ice cream, or iced coffee? We could go over for a visit, watch a TV program together, and have hot chocolate.” What you are modeling and facilitating is finding your power in a situation you find unacceptable. This is not boot camp. In fact, it is the opposite…It’s another deep dive inside.
You are teaching invaluable lessons. Even when we are afraid and sad, we are not powerless. Small acts of kindness often have BIG results. Our children will likely face some of the same heartache and difficulty in the real world. What an opportunity to shepherd them through this, demonstrating that we as parents are willing to have open conversations, share our own sad feelings, and begin the conversation that is always the case…it’s both/and.
“Yes, he has this illness, and we sure wish he didn’t. He had treatment that helped him for a while. He doesn’t feel well again, and now we can show him how much we care.” A quick Amazon search will give you dozens of great options for children’s books that tackle the subject of serious illness. Don’t forget, we have a remarkable resource (right here on the North Shore) in Care Dimensions of Danvers.
Fortunately, the conversation is evolving, as is our understanding and approach to including children in the end-of-life experience. As always, garner the resources of those you trust and admire who may have walked this path already. As painful as this is, it affords us an opportunity to introduce our children to the concept of what we can do instead of focusing on what we can’t.
Joanne MacInnis, RN, is the founder and president of Aberdeen Home Care, Inc., of Danvers, a concierge private duty home care agency in business since 2001. With 35 years of nursing practice, management and administration experience focused on home care and hospice, Joanne and her team specialize in advising and supporting families addressing the elders in their lives retain dignity and quality of life.
