Sense of Decency

By JOYCE AND JANET GRAMZA

Whether we believe in Heaven, the Great Beyond, the Other Side, the Rainbow Bridge, or nothing at all, we fear death most because its one certainty is that it will come. Everything else about it is a gaping unknown.

In our most comforting vision about how it may come for us, our closest loved ones surround us, holding our hands as we breathe our last.

This wish is one that we’ve been blessed to help grant for our mom, Florence Cavuoto Gramza, and our baby sis, Julie Gramza (Jewel), both of whom made it clear they did not want to die in a hospital.

It’s a wish and a comfort that has been denied to many dying people and their families during the quarantine restrictions of COVID-19 — a denial that has amplified survivors’ grief, magnified their feelings of guilt and been portrayed as one of the most horrible things about this pandemic.

Yet lately we’ve been revisiting our own wishes about where and how we want to die — and we now feel compelled to retract them.

Our mom passed away at age 75 at the home of Joyce and her wife, Z, who thankfully is an RN and gerontology specialist, on Sept. 23, 2013. As death came for Mom, Joyce was lying next to her in the hospice-provided hospital bed, Janet was in a chair holding her hand, and Z was alongside Janet. 

We had all fallen asleep when Janet awoke at about 1:45 a.m., feeling someone had tapped her on the shoulder. Mom was barely breathing. Janet woke Joyce and Z, saying, “This is it.” Z bent over her with her stethoscope, hearing her heart’s last beat at about 2 a.m., and pronounced her.

With the same gentleness and dignity that we provided in her last weeks, we washed Mom and dressed her for the hospice and funeral home people to see to.

Our presence throughout had helped ease her fear. Her death was peaceful, aided by morphine, and it was a huge blessing, even a major accomplishment, to have it happen the way she wanted.

But it was devastating for those of us who were there. Seven years later, we have still not fully recovered from the ordeal, and our family members who weren’t there don’t understand, after all this time, why it remains so hard to process.

More recently, we were there for our baby sister’s death at her home in St. Augustine, Fla., at about 5 p.m. on Feb. 5, 2020, one week shy of her 55th birthday.

Jewel had a rare type of gallbladder cancer and we had been obeying her requests that we take turns visiting her — until her husband summoned her three siblings and two daughters because the end was near. Janet, Joyce and Jewel’s friend Becca kept a vigil keeping her comfortable, and with no medical professional there, the hospice nurse advised us to start the morphine and call her when Jewel was gone. We held her as much as she could tolerate and loved her through her last breaths. 

Treating her with the gentleness and dignity we tried to provide during her dying, we bathed her, combed out her beautiful hair, and dressed her in her husband’s chosen outfit for the hospice and mortician people to see to.

It seemed a huge blessing to be with Jewel for her death — but it was devastating for those of us who were there.

Despite caregivers’ best efforts, death isn’t often quick, dignified or pretty. For loved ones untrained in comfort care and who do not know what to expect, it’s a recipe for trauma. 

An NPR story on hospice care shared the stories of people who did their best to give their loved ones “a good death,” and why some are now reconsidering their own last wishes. Families who helped loved ones die at home said they weren’t prepared for the amount of nursing care that would fall on them or the exhaustion and helplessness they felt in the last days. 

“I do think that when they are at home, they are in a peaceful environment,” said a palliative care doctor. “It is comfortable for them. But it may not be comfortable for family members watching them taking their last breath.”

Was being there for our mom and our sis something we are glad we did? Absolutely. Is it something we would ask of our own spouses and children? No way!

Our last memories of our mom and our sister are in death, eyes and mouth open, their bodies empty shells — and that’s not how we want to be remembered.

The experiences have left us thinking that when our time comes, as afraid as we may be, even if our loved ones want us to die at home, we wouldn’t wish it on them.

Looking back on our mom’s and sister’s deaths, we also realize that we were likely more present and focused on their dying moments than they were. Both were on morphine at the end, which dims awareness, and both seemed to be elsewhere well before their physical bodies shut down.

Many people who have had near-death experiences describe being outside their bodies and being pulled back reluctantly. After our mom’s death, we wondered why we woke up just in time. We felt like she was behind it — like she had already left her body and stopped to wake us before she departed. We now believe she wasn’t even in the building for the part that pains us to this day.

If the COVID-19 pandemic has taught us anything, it’s that our frontline medical workers are true heroes. We have heard story after story of people who died “alone” — without their families present — but who had professional providers by their side, comforting them and caring for them with the devotion and expertise that befits their vocation.

We know that, odds are, if we can’t have our favorite nurse, Z, holding our hands when we go, we’ll be totally blessed if some other nurse is there. We’ve decided we will likely choose to go to the hospital or a skilled nursing facility rather than die at home. We want to die knowing that some kind, competent, knowledgeable and calm caregiver is there for us. And then, they’ll be there for our family.

Janet and Joyce Gramza are identical twins who both grew up to be journalists — Janet in newspapers and other publications, and Joyce in science media. They reside about 20 miles from each other in Oswego County, N.Y.