Some of the hardest moments of Dawn Stultz Kingsley’s life were a stretch of nine days in October as her father, Vader Stultz, lay inside Sumner Regional Medical Center on a ventilator, dying from COVID-19.
She was inside her car, staring at the windows of the hospital, wondering in which room her father was isolated. Was he scared? Because she was.
“My poor dad had to lay up there in that hospital bed alone for nine days,” Kingsley says. “I couldn’t hold his hand when he could still see us and talk to us. We couldn’t love on him. And we all know that the love of your family – not being alone – is the thing that you need the most when you’re this sick.”
Kingsley is one of more than 5,000 thousand family members across Tennessee who have had to make end of life decisions without laying eyes on their loved ones, and in some cases, unable to be present with them when they took their last breaths.
It is one of the most painful tragedies associated with the pandemic – keeping those who aren’t infected away from those who are – even as the patient is dying. There is a risk to the community, and particularly, to family caregivers who may themselves be elderly or in a high-risk group for the virus.
“I don’t fault the doctors and the nurses, they were wonderful to us, and they were wonderful to him, but the system is broken,” Kingsley points out.
Kingsley fought every day to be able to see her father, who was 78 when he died. She offered to sign waivers and wear full PPE, but SRMC was steadfast in its policy as loved ones were agreeing to end-of-life decisions and saying goodbye on FaceTime.
She and her mother Wanda finally got approved for one visit for 30 minutes, one person and one support person. They had not wanted to make any decisions about how to proceed in Vader’s care until they saw him.
They also didn’t know the visit was approved just in time for the two of them to be with him when he died. Vader took his last breaths with his daughter and wife of 56 years, the two people that made up their threesome.
But now they were just two.
“This isn’t about compassion,” Kingsley says of the isolation policy. “This is about risk management. And people are dying alone as a result. And that is not compassionate care. That is not the way this should work. I didn’t know for sure if we were going to get in to see him and we did. And I think when she (her mother) saw him, she realized how bad he really was.”
Kyle Brogdon, director of marketing and communications for HighPoint Health System and SRMC, says end-of-life care decisions are medical decisions made by a patient’s attending physician and family. End-of-life visitation decisions are also made on a case-by-case basis by the physician and care team, based on many factors.
“The visitation policy at Sumner Regional has changed several times during the COVID-19 pandemic, based on the community spread of the virus,” Brogdon adds. “The hospital visitation policy shifts to protect patients and staff from potentially being infected by people unknowingly carrying the virus into the hospital from the community.”
Kingsley realizes just how lucky she and her mom were to be able to be with Stultz in his final moments, and that he died peacefully surrounded in their love.
“We had a beautiful end because we were able to all three be holding hands together,” she continues. “And I was holding my mom’s hand and my dad’s hand, and they were holding each others hands, and he died peacefully. But it shouldn’t have been such a fight for us to do so. There’s so many people out there who’ve been devastated by this, whose loved ones died alone with no one there.
“There is no way that anybody should have to die alone,” Kingsley adds.
Alone among thousands
As of Dec. 13, Vader Stultz was one of 5,344 Tennesseans to die of COVID-19. His family is one of 5,344 families grieving the loss of a family member in a way they never thought they would have to.
But among thousands of families suffering, for Kingsley, it had always been just the three of them. An only child, she adored her parents, Wanda and Vader Stultz. Their relationship wasn’t just one of mutual love either – they lived across the street from each other in Gallatin. The three of them saw each other every day. They ate meals together with her husband Billy and their dogs played together. Wanda and Vader got to dote on their grandsons Harper and Will every day.
So when her father died Oct. 6 of COVID-19 just days after his diagnosis, she compares the loss to a three-legged stool getting its most solid part kicked out from under it.
“It’s just been my mom and dad and I for my whole life,” Kingsley says. “Other people come in, but they’re my core strength. And as an only child, I don’t have siblings to lean on. Billy (her husband) is amazing, but anything we go through, it’s just been the three of us. Like right now, dealing with all this, I want my dad here to talk about it.”
Her father, Vader Thomas Stultz, was a Marine and Vietnam War veteran. He entered the Marine Corps his senior year of high school, finished basic training and was deployed to Cuba, Australia, Puerto Rico and the Mediterranean before returning home in 1964. When he came home, he met and married Wanda after just two weeks of dating.
While he was in the Marine Corps Stultz completed two combat tours in Vietnam. When he returned to the states he was stationed in Effingham, Illinois. In 1985 he moved his family to Hendersonville, where he work for the Postal Service until he retired in 2000.
Kingsley says her parents were concerned about catching the coronavirus, but not scared about it. They wore masks and took precautions, and Kingsley says they had been limiting the boys going over to visit, and if anyone in the house so much as had the sniffles, they did not visit at all.
“My dad was always like, ‘I just want to protect your mom.’ He’s always been our protector,” Kingsley recalls.
Stultz had a condition called myelofibrosis, also known as chronic lymphocytic leukemia, which is a slow hardening of the bone marrow. Stultz had suffered a head injury at the beginning of the year, so he needed monthly checkups with the hematologist at the Alvin C. York VA Medical Center in Murfreesboro.
On Sept. 14, he was admitted after some concerns from a routine checkup. On that day, he tested negative for COVID-19. He was released from the VA on Sept. 25 and was not tested again despite Kingsley saying she voiced concerns.
By Sept. 27, Vader was struggling to breathe. Kingsley thought her father had pneumonia and called 911. When the ambulance pulled away, she says she had a feeling it would be the last time she would see him at home. She was right.
But even more devastating would be the next nine days in isolation from his family, his last days on earth separated from his two strongest supporters.
“It still didn’t occur to me that he had COVID because he had just come home from the VA and they told us he was negative. When he entered that hospital, and it says on his paperwork that the patient was tested, and the patient tested negative,” she points out.
David K. DeRemer, deputy chief communications officer with U.S. Department of Veterans Affairs, said in an email that with community transmission rising in Tennessee, it is impossible to determine where any individual originally contracted the virus.
Drain of restrictive visitation
During widespread community transmission of COVID-19, the Centers for Disease Control says visitor access to health care facilities should be restricted. Only visitors essential for helping to provide patient care or are caring for pediatric patients should be allowed.
The rules concerning visitation at long-term care facilities in Tennessee during the pandemic, like hospitals, has also been extensive, and depend on the county case numbers, positivity rates and community spread. Facilities that choose to reopen to visitors must first test all staff and residents at least once and have no new COVID-19 cases in residents or staff members in the previous 28 days.
Rebecca Kelly, state director of AARP, is part of a new statewide long-term care task force that aims to have more clarity and understanding about the visitation policies for facilities for concerned family members and staff.
“Our focus seems to largely be on the physical risk, but we’ve got to balance that with the impact on mental health as well,” Kelly explains. “Just the staffing to support visitation and virtual visitation for in-home nursing is huge. You have to schedule a time to book a staff person to go to the room of your loved one to help them with FaceTime. So we’ve just got to keep working on solutions that are easier. Because this is only going to get worse.”
Kelly says COVID has pushed the issues surrounding public health and aging in place to a level that can’t be ignored.
“This pandemic has shined a spotlight on the vulnerable parts of our infrastructure,” Kelly says, who along with her husband, has a 98-year-old parent in an assisted living facility, and two other parents living at home. “So I see this from all angles.”
Kelly says families recognize the incredible challenge nursing homes are facing right now with their own staff shortages, but that has to be balanced with the mental impact of the grief that families are going through with not being able to see their loved ones in their final days and hours.
“Often, especially with long-distance caregivers and families, the holidays are the one time during the year, or two times, they’ve had a chance to visit with their loved ones. And to pull that option away is truly devastating,” she acknowledges.
Instead, she recommends families think through new opportunities to make memories, going back to traditional methods of communicating, because this is going to be the normal for some time yet to come.
Kelly says in many ways health care workers are turning to the work hospice workers have been doing in terms of communicating with families during end-of-life care as a roadmap for what’s next.
“Even before people are at end of life, we may have a lot to learn from hospice,” she says. ‘They understand what’s happening physically, and they communicate well with the family, and can often be the go-between for family and the loved ones. They know when and how to do that, and (we) are trained well in that area.”
Of course, it is another thing to pay front-line health care workers and nursing home staffers for the training it takes to make those personal connections between residents and families, and being able to handle that emotionally.
“I think that’s going to be what we look back on in history as being the most difficult thing of this pandemic - not just the loss of jobs, the loss of health, and loss of life, but the loss of the connections that we once were able to have. And I think as we move forward, it’s important for all of us to think creatively about how we can build community around individuals and add more in long-term care facilities.”
Moving past COVID
The weekend of the funeral, Kingsley says she was still in complete shock, trying to wrap her head around the fact her father was gone and trying to connect with much-needed loved ones and honor him in a way that also didn’t expose her high-risk mother to COVID-19.
“I can’t bear to lose her to this, too,” she says.
She really wanted to talk to her dad about what he thought of the funeral, or her eulogy, because those were the kinds of conversations they used to have.
Some days are better than others. One day, helping her mom file all the necessary paperwork for Social Security, life insurance and VA benefits, they had a stack of death certificates that all listed hypoxemia due to respiratory failure, COVID-19 virus as the cause of death.
That was a bad day.
“It was just like a smack in the face, you know, and I thought I’d been doing really well,” she continues.
But it is also the everyday moments that make her catch her breath all over again.
“I live across the street from my parents, and seeing my dad’s truck sitting there, or looking out from where my desk is to where his porch swing is, where he used to sit every morning and drink coffee with the dogs, I just expect to see him there. Or expect to pass him on Douglas Bend going to Walmart when he’s not supposed to be.”
When a loved one dies it is hard not to relive the last days and weeks, and how you might have been able to make a difference in the outcome. It’s a mental burden that can be exhausting.
And it doesn’t take away the sting of hearing him tell her he loved her the last time over a video chat.
“I just keep thinking, if I could just rewind the clock, could I have done something different? Could I have fought harder for something? Could I have called 911 sooner?”
Kingsley says her mom Wanda is in many ways doing better than she is because she’s actually acknowledging that she’s sad and acknowledging this sucks and not trying to be anything, but what she is in that moment, and not making any apologies for it.
“I think she’s doing OK, but it’s just so early,” Kingsley adds. “It wasn’t until he got COVID that his life, our lives, changed forever. There was just no way he was coming back from that. And it was just insult to injury when we couldn’t be there, to encourage him to fight.”