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“As difficult as the end of her life was, I would do it all over again if I could have more time with her,” says Chester Rozmarynowski. “Every single day, I miss my wife.”
Loretta Rozmarynowski passed away in August 2012 at age 80, the last decade of her life ravaged by Alzheimer’s. Twelve years earlier, at a restaurant in Media, Loretta excused herself to go to the ladies’ room. When she didn’t come back, Chester went looking for her. His wife was outside, waiting for a taxi that wasn’t called, expecting to go home to an address she couldn’t remember.
What followed was years of doctors’ appointments, medications, night wanderings, and increasingly frequent mental lapses. By 2004, Loretta’s body was falling apart. Because she could no longer manage steps, the couple moved to a one-floor home near Coatesville. By 2009, she was confined to a wheelchair.
The physical symptoms of Alzheimer’s were nothing compared to the behavioral changes that rendered Loretta paranoid and argumentative. Then, that yielded to something worse: silence. Slowly, then quickly, the ability to communicate eluded Loretta. Mute and inert, she was completely dependent on her husband. Her mind gone, he cared for her body.
In the summer of 2011, Loretta further declined. The staff at Adult Care of Chester County, where she spent a few hours of every weekday, suggested an evaluation for hospice. “The hospice people said she should’ve been there a long time ago,” says Chester.
This is a common situation. “People put off thinking about hospice mostly because they have a misperception of what it is,” says Amy Tucci, president and CEO of the nonprofit Hospice Foundation of America. “When caregivers and patients learn the facts, they usually wish they’d done it sooner.”
According to Tucci, hospice is just as much about living as it is about dying. “It’s not: How do you want to die?” she says. “It’s: How do you want to live the end of your life?”
Medicare, most of Medicaid and many private insurance companies will cover the cost of hospice. “The personnel—doctors, nurses, social workers—and the medical equipment, supplies and medications are covered,” says Gloria Allon, executive director of the Plymouth Meeting-based Crossroads Hospice, which worked with the Rozmarynowskis.
Hospice care can begin immediately after the doctor, patient or medical proxy decides it’s the right option. Services are available in homes and hospitals, plus long-term-care and in-patient facilities. “Once the medical order is signed, we have someone at the patient’s home within hours,” says Heidi J. Owen, hospice services director for Neighborhood Health, part of the Chester County Hospital and Health System.
Initially, doctors certify patients for 90 days, then re-evaluate and certify them for another 90. After that, certification comes every six months—all for insurance purposes. Patients see nurses every day, or as often as is required. They’re evaluated by the hospice team every 14 days.
“It’s an interdisciplinary approach that includes doctors, nurses, case managers, social workers, chaplains and volunteers,” says Allon. “All of these people meet with and evaluate patients. They see them through the filter of their expertise, which they bring to bear in the care of every hospice patient.”
And no patient is trapped. “They can go off of hospice care if a new treatment or drug trial becomes available and they want to try it,” says Allon. “If there’s no improvement, they can return.”
Patients can work, go on vacation and lead normal lives—to the extent that their physical conditions allow. They can also be treated for medical issues unrelated to their terminal illness. “A patient may have N-stage cancer, but trip and break a hip,” Allon says. “That person can get a hip replacement and still be on hospice care for the cancer. Why should he be incapacitated with a broken hip if he may have another year or more of his life?”
Hospice also changes the lives of care-givers—usually for the better. “Very often, they are exhausted from dealing with medications, feeding, bathing, changing diapers and sheets,” Tucci says. “Hospice takes over those responsibilities. That changes the dynamic between the patient and the caregiver. A child or spouse can go back to being just that.”
Bodies die mostly in the same way, no matter the ailment or illness. Blood pressure drops. Urine output decreases. Breathing slows, then falters. Extremities become cool, then cold. “Because we’re monitoring the patients, we see these signs,” says Allon. “We tell the family so they can ready themselves. Some patients are unconscious, but some are not—and they may choose to lower their pain medication so they can be more alert for a short period of time.”
Loretta Rozmarynowski didn’t have that option. She lingered for weeks, her husband says. It’s possible that she simply didn’t want to leave her husband—and it’s definite that he didn’t want her to go.
“As awful as the Alzheimer’s made our lives, I would’ve given anything for more time with her,” Chester says. “At the end, the nurse kept checking her pulse and telling me she was OK—and she was. But then, Loretta looked up at the ceiling, and I knew that she’d died. I asked the nurse to check again, and there was no pulse. She was gone.”
“What I am grateful for is this: The hospice people focused on the illness so I could focus on Loretta,” adds Chester. “My only job was to love her. That was my job for 52 years. It was my job on the last day of her life, and it will be so until the last day of my life. I’m her husband, and she is my wife.”
Source: National Hospice and Palliative Care Organization
Number of patients who received hospice services.
Percentage of U.S. deaths while under hospice care.
Average hospice stay (in days).
Percentage of hospice patients 65 or older.
Percentage of hospice patients with cancer.
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