There is a well-worn path between my house and my parents’ that my kids traverse daily. Growing up with grandparents as next door neighbors comes with benefits: Opportunities for impromptu chats abound, as do (seemingly) endless ice cream treats in the freezer drawer, and episodes of Jeopardy! in the living room (we have no TV at our house). At present, this proximity also comes with a front-row seat to my 82-year-old dad’s decline.
Recently, my 16-year-old daughter was next door playing backgammon with her grandfather when he motioned my 13-year-old to come closer.
“Who is that person sitting across from me right now?” he whispered in her ear as she crouched by his wheelchair.
Without skipping a beat, she whispered back: “That’s Kathryn, grandpa, your oldest granddaughter,” before patting his shoulder in reassurance.
Hearing my girls recount this exchange made my heart break just a bit, until I realized the silver lining: Including my kids in the conversation surrounding their grandfather’s recent diagnosis of dementia is a gift. I asked therapist Tammy Valicenti, LICSW how to best manage this experience — my father slowly forgetting his grandkids’ identities — without allowing it to traumatize my kids.
“If you are living, life is traumatic,” Valicenti tells SheKnows. “Trauma is not the thing that happens to us; it’s how we do or we don’t manage it. When we feel terrified and alone…we can experience trauma.” The best way to manage it? Include kids in age-appropriate conversations.
Five years ago, when my youngest daughter died of complications following a heart transplant, I did not include her sisters in the excruciating end-of-life decisions surrounding Cora’s care. Instead, the decision to withdraw life support was made without their knowing, and Cora had already been cremated by the time the girls’ father and I returned from the hospital with the devastating news.
“Death, itself, is not traumatic,” Valicenti points out. She mentions earlier generations of families, who would live all together and witness death as a normal part of life. “Kids very much saw it from the beginnings of illness to the final breath; it wasn’t something that we hid,” she explains.
As it turns out, my own inclination to shield my kids from the pain of their younger sister’s death created the very trauma I was seeking to avoid. As to my suspicion that my daughters’ imaginings and fantasies were worse than what was actually happening? “That’s almost 100% true, and then [caregivers can create further trauma] when kids are denied the time to say goodbye,” according to Valicenti.
Shielding my kids from the pain of their younger sister’s death created the very trauma I was seeking to avoid.
Which is precisely why I am giving my kids the chance to walk this end-of-life path, with their grandpa, differently than with their sister — ie, with complete transparency.
Some days, grandpa is lively and surprises everyone by answering trivia questions that stump the rest of us; other days, he is in his own world: “Do you see that turkey, strutting by the kitchen window?” he asks. “What about the men, sweeping the streets with the sunflower stalks? Tell those kids on the front lawn to stop playing with matches!”
My kids know all about hallucinations, and I am brutally honest: I am quick to admit that this is so hard, whether I choose to play along with my dad or explain that I see nothing. Through it all, I am striving to navigate a difficult situation well in order to avoid lasting negative effects for my kids.
It’s a strategy pediatrician and Infant-Parent Mental Health Specialist Claudia M. Gold, MD calls “navigating the mess” — as opposed to avoiding it. “Smoothing things over and pretending all is fine can be problematic, especially if what you are saying is out of sync with what [kids] are experiencing,” she tells SheKnows. Kids are well-versed in telling you how much they want to know; this fact can shift the conversation from if one should include kids in the conversation to how.
Gold suggests addressing your own fears and meeting kids where they are. “Wonder with them: What is this experience like for you?” she suggests. Another idea? “Give some parameters, so they can wrap their minds around what they are experiencing.” This can be particularly helpful when what is unfolding — in the case of dementia, for instance — is entirely unpredictable and highly volatile. Valicenti reminds parents to take into consideration their children’s developmental capacity and specific age: “You want to tune into and follow your child; are they asking a lot of questions and want a ton of information? Give it to them.”
My kids rely on a consistent connection with their grandparents to keep them grounded; as a single mom, I rely on this relationship as well. Together, we are learning to face the challenges each day brings.
“I’m not going down there alone,” my younger daughter announced the other day, hesitating in the middle of the long, polished hallway leading to my parents’ bedroom. Grandpa was too tired and confused to get out of bed, and she wanted my company. The process evokes mixed emotions for us all, but I am committed nonetheless.
“Don’t forget to normalize death for your kids,” Valicenti adds, explaining that many adults bring an aversion to death and assumptions about it being “really difficult and ultimately traumatic for our kids.” This does not have to be true. “That’s the layers of the learned, cultural stuff,” Valicenti adds.
I liken it to watching thunderstorms roll in from the west, something my dad has enjoyed for decades: If one takes notice of the sky, observing its fluctuations from day to day, it is not alarming when dark clouds creep in and the rain comes. Similarly, my kids and I are learning to find solace in our regular rhythms despite grandpa’s decline.
“This. Is. Jeopardy!” he still announces, struggling to get the timing just right, while raising his pointer finger in the air with a flourish. We smile, snuggle into our respective spots on the couch, and count our collective blessings — that we are able to bear witness to this, the next stage of a remarkable life that, like each of ours, will one day end.
As to the best part? My kids’ tolerance for sitting in uncomfortable spaces and the strength of our shared bond has only increased, in large part due to wading directly through the middle of the mess.