My parents were born on the same day, six years apart, Depression-era babies. My dad died on Christmas Eve, 2016. Nearly every Christmas season after that, for the next seven years, I hoped Mom would follow him.
Was I wrong to wish that?
Dad played Santa Claus for three decades, donning a suit that had belonged to his mother, along with her bearskin gloves and a set of sleigh bells. Eventually, he passed the suit on to a nephew. Family lore recounts how, at six years old, Dad sat on Santa’s lap and shared his Christmas list. Later, he remarked to his older sister, “Santa’s eyes look a lot like Mom’s.”
His sister didn’t spill the beans.
Dad’s Christmas Eve death felt strangely fitting, given his devotion to the holidays. He played Santa a dozen times a season at family and community events. Every December, much to my mom’s chagrin, he climbed a two-story ladder to the barn roof and hung a “Merry Christmas” banner for highway passersby. Friends and strangers always knew exactly where we lived, thanks to the season’s greetings from the Zinks.
My mom was a supportive Mrs. Santa, chauffeuring him to gigs, and a quintessential 1950s wife, taking care of the home and raising the children as he ran his dental practice. As they grew frail with age, they reluctantly left the farm and moved to a cottage in a local senior living complex. For my mom, falls led to two hip repairs. Dad developed abdominal pain at 92 and decided not to have the corrective surgery. He died peacefully in hospice.
Two years after Dad’s death, my mom fell and broke her shoulder, necessitating a move to the complex’s assisted living facility. Living with one of us was not an option because her father had lived with our family until his final year, and she refused to burden us in the same way. She hated to give up driving and her independence to cook and shop, but even with hired nursing visits, staying in the cottage wasn’t feasible.
In assisted living, she contracted COVID. The facility handled the pandemic poorly, as did many others. We moved her to a different facility where she could leave her room for group activities and meals. Yet, she hated it there because she couldn’t attend Mass, even by television. My sister brought her to California to live with her family.
Despite the California sunshine, after three months, Mom wanted to return to assisted living so she could attend daily Mass. The month after returning to assisted living, Mom suffered a stroke that paralyzed her left side. She declined physical therapy to regain strength; she’d never been one to enjoy exercise. We hired extra nursing support to keep her in assisted living as she required help with dressing, toileting, and eating.
Christmas 2022, I stayed with Mom and gave her hired aide the week off. When the facility’s nurse’s aide, Joan, entered the room to respond to Mom’s call, Joan asked, “Where’s Erica?”
“We’re giving Erica the holidays off,” I said. “I’m here to help.”
“I need Erica to help with your mom,” Joan said.
How could I respond? I am a family physician, but I’m not accustomed to transferring patients, changing adult diapers, or assisting with bed baths. I was educable. “Pretend I’m Erica,” I said. I could and did learn, but at sixty-eight years of age, I wasn’t strong enough to move Mom from her chair back to her bed alone.
That week, it became clear Mom no longer belonged in assisted living. Her lack of interest in rehabilitation meant that she needed more care. I spoke with her physician about transferring her to the nursing home.
Despite her intermittent confusion, Mom dreaded the move. She had spent six years advocating for my special needs sister in the woefully understaffed nursing home.
Joan, the nurse’s aide, told me she hoped Mom might pass peacefully in her sleep, like the man in the next room had a week earlier.
Each of us daughters had a similar conversation with Mom: “We will miss you, but we don’t want you to suffer. Please go join Dad.”
Mom always smiled and replied, “I’m not ready yet.”
We asked her what she needed to feel ready, but she could not articulate it.
A month later, in February 2023, we moved her to the nursing home. Staff were still stretched thin. Temporary agency nurses, unfamiliar with the patients, often filled in. Call buttons went unanswered for hours. Not much had changed since Mom had advocated for my sister there.
Now, wheelchair-bound, incontinent, and needing help with eating and bathing, she qualified for hospice. Hospice provided a volunteer to bathe her twice a week and an RN to check in. Most importantly, hospice prevented ED and hospital transfers when Mom became confused and fell trying to get out of her wheelchair or bed.
Her memory continued to fail. She had trouble recognizing friends, difficulty speaking, and often appeared anxious and perplexed. One time I visited, and she was worried about the ice cream pint that she couldn’t get off her head. I started praying for her to die and asked hospice to start anti-anxiety medication.
My sisters and I muddled along. Those in town visited regularly. The two family doctors, who lived out of town, FaceTimed her routinely when the in-town sisters visited. We physicians coordinated our in-person visits so one of us was there every three months to manage her care. As Mom’s POA, I arranged her haircuts and toenail trims, checked in with hospice, and talked to the director of nursing about medication errors. There was always something to attend to, and it rarely required a single phone call or email.
When I visited Christmas 2023, Mom showed signs of left-side neglect, a further result of strokes. No one in the nursing home had noticed. I rearranged her room so people approached her from her good side. Her decline was undeniable; she could no longer dictate messages for her grandchildren’s Christmas cards. I prayed harder for her to die.
Mom would have hated this existence when she was in her right mind. But she continued to eat. Did she have any control over stopping to eat, or was a primal survival pathway activated? We wondered what she was waiting for, whom she worried about. She couldn’t articulate what she needed to do or what we needed to do to help her move on. Did she love being cared for? Staff at the nursing home were stressed, and care often inadequate. What kept Mom living?
However, nursing home staff and volunteers loved her: “She is so kind and sweet and never asks for much.”
That was a problem. Mom couldn’t advocate for herself.
Advocating for her care in this award-winning, yet inadequate, senior complex was exhausting. Without our constant vigilance, Mom would have languished in soiled diapers, gone unfed, or been left uncomfortably crooked in her recliner. For most of us, it was tragic and painful to sit on the sidelines of her slow decline, to witness the deficient care for someone we loved.
I continued to pray for her death. Was that wrong of me?
When she lost her ability to speak, it felt like we were watching death neuron by neuron. When my sister told me she had to remind Mom to swallow, I asked hospice to direct staff to stop feeding her. Despite orders, nursing home staff got her up and rolled her to the breakfast table the next morning. It took several more conversations to enforce the order.
Mom’s anguished expression haunted us. When we asked if she was in pain, she shook her head, but we worried she was suffering emotionally. Hospice hesitated to start regular morphine. Finally, I texted her primary care doctor directly to request it.
Mom died peacefully on a Friday in October. The following days felt transactional. Emails and calls to the facility went unanswered. A sister cleaned out her room on Sunday. On Tuesday, I received a call from the nursing home director about charging the $491 daily fee until the furniture was removed. No condolences were offered.
My mother raised well-educated daughters—two physicians and two educators. How do families manage without knowledgeable advocates? How do patients manage without families to fight for them?
As a society, we must do better. Where is the compassion and empathy in health care today? Can and should we do more to shorten extended declines? I have sought help from the vet when my pets were frail and in pain.
Was I wrong to pray for her death? I would love to have received the answer to these questions this past Christmas. Of course, I did not. However, my physician role with my mother has ended. The advocacy roles my sisters and I managed for both parents are over. We are mourning our losses as daughters and imagining that this past Christmas, Santa, and Mrs. Santa were together once again.
Therese Zink is a family physician.
