Jody Wooton’s mind is made up.
“I refuse to go to a nursing home,” she says.
Jody had answered the door slowly when Jen Moss knocked. Sickness makes her mornings harder these days. Her voice now sometimes gives out in midsentence. It punches strong at first, then fails suddenly, the sound of thin air rasping through a flute.
“How are you feeling today?” Jen asks.
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It is a chilly Tuesday in February. Jen, 41, a nurse with Kansas City Hospice & Palliative Care, settles into the couch in Jody’s Overland Park apartment across from her terminally ill heart patient, only 64.
“Better now that you’re here,” Jody says with a crescent smile. For all her defiant sass, Jody’s expression most often is one of impish cheer.
Sir Winston, her black cat, a rescue pet adopted from the vet, perches like a sphinx on the arm of her chair. The cremated remains of her chihuahua, Mia, rest in a tiny urn on a corner table.
Over the last year, Jen and Jody have formed a bond that neither expected - the empathetic nurse who has known pain, including the killing of her first husband, and the spunky patient facing her end with clarity.
They’ve become so close that last September, when Jody was sturdier and Jen invited her to a Kansas City Royals game, it wasn’t just a kindness for a patient; they liked each other.
“I told her, ‘We don’t have to stay for the whole game if you don’t feel up to it,’” Jen says.
Jody’s reply: “Oh, we’re staying for the whole game!”
It was the night the Royals shellacked the Seattle Mariners 10-4 to clinch the American League Central Division title on their way to winning the World Series.
“I love her spirit,” Jen says.
Both women keep copies of a photo: Jen behind Jody, dressed in Royals gear, smiling in their seats up and along the first-base line.
“Chest pain?” Jen asks as she continues her exam.
“Some this morning,” Jody replies.
“What’s your pain level today? Scale from 1 to 10?”
“About 3.6,” Jody replies. But it fluctuates. Mornings, she’s waking dizzy and sweaty.
One day last week, the pain was so sharp she wondered if she’d live - and, in some ways, would have been fine had she not.
Jen knows: When that last moment arrives, Jody wants it to happen here, with Sir Winston and Mia, in the peace and comfort of her own home.
The chief reason Jody gave up treatment and signed up for hospice was to no longer have to deal with hospitals.”I won’t,” she says.
Nursing homes for her raised terrible connotations.
At the time her mother died in 2007 with an abdominal aortic aneurysm, she lived in a nursing home, supposedly a good one. She did not leave life peacefully. She instead was raced by ambulance to a hospital in what family members describe as “screaming pain.”
To Jody, the notion of dying in a nursing home is anathema. For her own dignity and peace, she prays her death will be quick, no bother: One final heart attack and she’s gone.
“I’m a heart patient,” Jody says.”When this happens, it’s going to happen fast. That’s one thing I’m going to look forward to. Not really the dying, but that it’s going to be over with. I am a little tired of the fight.”
But on the chance it doesn’t happen that way, a meeting has been planned in two days with Jody, one of her brothers and the hospice social worker, Crispian Paul.
Jody feels anxious.
The agenda is to come up with options in the event that Jody doesn’t die quickly but instead lingers and falls ever more sick. Right now, she manages well in her illness: shopping with neighbors, cooking, eating. She has an oxygen tank, hydrocodone for pain, a prescription for nausea and low-level liquid morphine, also for pain and shortness of breath.
She gets around in her wheelchair.
“I have my house cleaned once a month. Other than that,” Jody says proudly,”I care for it.”
But she also lives as a widow on her own.
Hospice provides a lot of care, but not every hour of every day. At this point with Jody, Jen visits twice a week, on Tuesday and Friday, for an hour at a time, with the plan to increase visits as the end of life approaches.
Bath aide Suzanne Fuller, who also has grown close to Jody, comes twice a week to help her care for herself.
On-call nurses can be contacted anytime in emergencies. But in general, it is only in the last few days of a patient’s life that Jen’s hospice offers “extended care,” when nurses are there many hours throughout the day, making sure they are present at the end if the family wants.
So if Jody lingers, she will need a caretaker to help. Maybe that’s a relative. Maybe it’s a nursing home.
“If I can’t get someone in here to take care of me,” Jody declares, “then we’re going to be in trouble. Because I will not go into a nursing home.”
Besides, this is where her life is.
Photographs line Jody’s walls and shelves. It’s where she shares her story.
She was born Jennie Joan Kerby in August 1951, the fifth child of seven, destined, with five brothers and one sister, to be a tomboy.
Dad was a carpenter, Mom a mom. “She was pregnant, it seemed, like every time you turned around,” Jody jokes.
All grew up in the hamlet of Bogard, Mo., population now about 160 people, some 90 miles northeast of Kansas City in Carroll County.
“Not much left there anymore,” she says.
At age 17, Jody was diagnosed with diabetes, an illness that would come to affect the vessels of her heart and even, at age 51, to rob her of the lower half of her left leg. Vessels were removed for use in a heart bypass.
“Nobody ever told me you had to watch the leg carefully,” Jody says. She wears a prosthetic. “The blood flow was compromised.”
Between 18 and now, she held jobs, nothing big or special, the longest and last for more than a decade as a medical transcriptionist. More notable were her four marriages. The last, in 1995 to Bob Wooton, was wonderful. A veteran, he and Jody shared a love of dogs. In 2009, he died one day before Valentine’s Day, after which Jody moved into Overland Towers Apartments.
“The best marriage I ever had,” she says.
But some, Jody says with candor, were not so hot.
“I always said I had a bum-meter,” she jokes, and laughs until her voice weakens.
One marriage was tragic. They had a son together. But at birth, the boy died, parts of his body deformed.
“He only lived 20 minutes,” Jody says.
Adding to her grief is that she was not conscious when he was delivered by cesarean section.
They whisked her son away. She never saw him, never held him. Worse still, Jody claims, is that while she was unconscious, the doctors told her husband it was unsafe for her to continue to have children as a diabetic. They asked his permission, but not hers, she says, to tie off her fallopian tubes.
When she woke, she discovered her boy was dead and she was sterile.
“That,” Jody says of that marriage, “was the beginning of the end.”
When she dies, Jody says, her plan is to be cremated and have her ashes mixed with Mia’s, to be spread on the graves of Bob, her son and her parents.
She knows with 100 percent certainty that she will see them again.
Source of comfort
All patients who enter hospice come with their own beliefs, or none, in God or an afterlife.
Much of providing a good death, Jen says, is in listening with understanding and without judgment.
With Jody, that has hardly been difficult.
Jen was 28, with two young children, when her first husband was shot and killed near Westport as he stepped in to protect his brother in a fight.
“When my husband passed away, I never blamed God or was angry with God about it,” Jen says. “I’ve never had any doubts about where we go.”
Even if she possessed those doubts, she says, working in hospice would tend to banish them.
“It is a very, very common experience,” Jen says, “that once the dying process starts, that people see their loved ones coming for them.”
The medical explanation goes to changing metabolism at death and the hallucinating brain. Jen has her own thoughts.
“It comforts me,” she says, “to know that my family will be coming for me one day.”
Hospice workers also will talk of “terminal agitation” or “terminal restlessness,” in which some patients become irritable, angry, depressed or upset, sometimes thrashing about, perhaps even seeing figures from their past whom they fear. Medical and metabolic explanations are many, including infections, medications and poorly managed pain.
But the restlessness also can be psychological. It’s common among war veterans and among those who carry guilt or believe they have unfinished business.
“The best (psychological) way to explain it,” Jen says, “is that the mind and the body are not on the same page with this journey.”
Among the most common examples are parents with children they don’t want to leave.
“They are worried,” Jen says.
In hospice, counselors and clergy work, often with family, to ease the patients’ minds and emotions.
Jody’s mind is already mostly at ease.
“I’m a big believer in the afterlife,” Jody says, sharing it almost sheepishly.
“I know you’re going to think this is crazy,” she says. But throughout much of her life, she has had spiritual connections, claiming since she was a young girl to be able to see the spirits of others. She says she once saw the spirit of a young man standing near Jen.
On the day Jody’s own mother was approaching death, Jody’s sister asked her, “Do you see Dad’s spirit?”
“I see him over there,” Jody responded.
Her image of the afterlife is clear. In death and in heaven, Jody says, everyone, no matter at what age they die, is about 35 years old, even those who died in infancy. Even her own son, whom Jody insists has come to visit her.
“I can’t say I’m not afraid to die,” Jody says. “But I have my mind made up. That’s me. When I made my mind up that I was going on hospice, I was going on hospice.”
Her mind is certain she will die at home.
“I told her,” Jen would say, “‘You’re probably going to have a heart attack and not need a nursing facility.’ For her sake, I hope she goes to bed one night and doesn’t wake up.”
But that wasn’t to be.
Tuesday: A prayer for Jody.