This story was originally published on Next Avenue.
The ever-witty author Delia Ephron recently wowed a mostly female boomer audience at the Motion Picture & Television Fund’s Women’s Conference, making the crowd laugh with spot-on stories about skipping cab rides to afford a blowout for her unruly hair and wondering why kale is the new wonder food.
But the mood turned more somber as she spoke of her late sister, the noted author, screenwriter and film director, Nora Ephron. The two were extremely close, not just as sisters but also as writing partners for films such as When Harry Met Sally and Hanging Up.
“When Nora became ill, she told very few people,” Ephron said to the hushed crowd. Her sister didn’t want a flood of sympathy for her losing battle with leukemia or to spend her last months entertaining the mourners — those who come to dwell on your soon-to-be exit. Delia became part of a small circle who cared for Nora, emotionally if not physically, in the last months of her life.
Part of that caregiving role was to keep her sister’s diagnosis under wraps. Even though Delia knew the truth, she found herself embracing the canard. Some days, she was able to forget Nora was ill.
When Denial Is Healthy
When caring for an older parent, ailing spouse or sibling struggling with a devastating diagnosis, denial is often a place caregivers dwell. They may be driven there because they feel overwhelmed or angry, or because they don’t understand “medical speak” and want to tune out.
And while an initial state of denial is neither uncommon nor unhealthy, according to Dr. Ira Byock, a leading palliative care physician and author of Dying Well, it’s not a place to stay for the long haul.
“If you are thirsty on a hot summer day and turn on the hose to get a quick gulp of water, it alleviates your dehydration, which is good for you,” Byock said. “But drinking from that spigot all day long can be detrimental to your health.”
A persistent state of denial paralyzes caregivers and can ultimately impede the advocacy and support your loved one needs.
Caregivers: Start Talking
Byock contends that providing quality care requires conversation. And caregivers should start the talks, even though doing so is scary.
“We are a deathophobic society,” said Byock. “For many health care professionals, the conversations around illness and death are clinical and cold, they are not personal.”
As a caregiver, you must find out about your loved one’s wishes and needs. You need to talk with the health care team so everyone in it understands your advocacy role. You should have conversations with your family and friends to let them know that your life has taken a detour as you provide care and that you may need help or understanding yourself.
Caregivers who exist in chronic denial prevent these essential conversations from happening.
Moving Between Reality And Denial
And yet, some experts believe denial can be an effective tool for caregivers. Going there temporarily can let you focus on being present with your loved one and not allow the negative to engulf opportunities for joy. These mini-breaks in reality can give you strength for the times when you have to summon that fighting spirit you and your loved one need to battle a brutal illness or health issue.
One sixtysomething I spoke with, who is caring for a husband with lung cancer, said she blends denial (in daily life with her husband) with debate (weekly conversations with her husband’s physicians).
“I’m able to get out of bed every day and enjoy time with my husband by pushing his diagnosis to the corners of my mind for a few hours,” she told me. “We have days where we don’t talk about the cancer, we go to early dinners with friends or watch old movies at home and it’s like the cancer has disappeared. But when we go to his weekly doctor appointments or he has a chemo treatment, I’m front and center with the nurses and doctors. I’ve done my homework and I will continue to ask them questions until they give me answers that satisfy me. My husband feels I’m pushy but I tell him it’s my role to push everything so we can have more days together like the ones where we forget he’s sick.”
The renowned authors Elisabeth Kübler-Ross and David Kessler wrote about the five stages of grief. Denial is the first stage. Acceptance is the last. Many experts believe we cycle back and forth through these emotional states throughout, and after, our caregiving journeys. You may not always move through them sequentially. For some caregivers, denial is where you begin and you may revisit it.
Delia Ephron said the lesson she took from being part of the conspiracy hiding her big sister’s illness wasn’t so much about denial, but rather about working together.
“Collaboration is the key to life — whether it’s writing a screenplay or keeping a sister’s secret,” Ephron said. One of the best gifts we can give our loved ones is becoming their collaborator on this journey.
Sherri Snelling is executive director at Keck Medicine of USC and author of A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care. She is a nationally recognized expert on America’s 65 million family caregivers with special emphasis on how to help caregivers balance “self-care” while caring for a loved one.