Some lost without hospice

Bittersweet friendship: Patients, caretakers bond over circumstances

BY AUTUMN PHELPS
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Through thick and thin. Manny Grubstein, 60, with his wife, Carol, has ALS or Lou Gehrig's disease, and can no longer move his arms or legs. The tube in front of his face is a microphone. Tim Shortt, FLORIDA TODAY



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Brevard hospices

Hospice of Health First, 1900 Dairy Road, Melbourne, 952-0494


Hospice of Health First, 200 S. Courtenay Parkway, Merritt Island, 952-0494


William Childs Hospice House (Health First), 381 Medplex Parkway, Palm Bay, 434-8400

Wuesthoff Hospice and Palliative Care, 8060 Spyglass Hill Road, Viera, 253-2222, www.brevardhospice.org

Hospice of St. Francis, 1250-B Grumman Place, Titusville, 269-4240, www.hospiceofstfrancis.com

VITAS Innovative Hospice Care of Brevard County, 4450 W. Eau Gallie Blvd., Suite 280, Melbourne, 984-4403, www.vitas.com





Up close and personal. Manny Grubstein, who has Lou Gehrig's disease, gets a kiss from Registered Nurse Pat Palmer while in his "jukebox" room, where he keeps much of the music he loves. Over the years, Palmer has built a strong friendship with Grubstein. Tim Shortt, FLORIDA TODAY




Manny Grubstein of Viera hasn't lost his sense of humor, his pride in being a New York Yankees fan or the long, bushy moustache he's been growing since he got out of the Air Force in 1971.

Grubstein isn't ready to give up any of that, despite the inevitable. In December 2003, he was diagnosed with amyotrophic lateral sclerosis, a terminal illness more commonly known as Lou Gehrig's disease. Nearly three months ago, the disease robbed him of feeling in his arms, which used to allow him the simple freedom of driving himself in a motorized wheelchair through the neighborhood to a nearby park.

Grubstein tires easily, must use a machine to help him breathe and a microphone to amplify his voice. He spends his days listening to music from an iPod hooked up to speakers, and "thinking a lot," he said.

It's a grim picture for Manny, his wife of 40 years, Carol, and their three grown children. But something that's helped the family through the past two years, during the late stage of the disease, is Wuesthoff Brevard Hospice and Palliative Care.

Manny's hospice nurse Pat Palmer has built a strong friendship with the couple.

"After a couple of years with these folks, we've become friends," Palmer said. "There's still emotions involved, you do cry, but it's a good experience."

Manny describes a bittersweet circumstance.

"What I've found interesting, also, is the people I've met through the disease, I wish I had known my whole life," he said. "In a way, I'm almost thankful for the disease."

'Time to get help'

According to the National Hospice and Palliative Care Organization, the vision of hospice care is "A world where individuals and families facing serious illness, death and grief will receive the best that humankind that can offer."

Modern hospice care dates back to the 1960s, and nowadays most people are aware the organization's goal is not to cure patients, but help them feel comfortable in their last years, months or days of life. That's why it's often difficult for patients to welcome services.

"For the longest time he said, 'we can do it ourselves,' " Carol Grubstein said. The couple has been together since they were 15 years old. The Grubsteins had been through a lot, and had no reason to doubt they could endure Manny's illness on their own.

As the disease progressed, however, caring for her husband began to take a toll on Carol's strength and health.

"He's a big man. I could not do it myself," she said.

"I said, 'It's time to get help.' "

Many others like Carol make the same decision. The National Hospice and Palliative Care Organization reports 1.3 million people with life-limiting illnesses received hospice care in 2006.

Medicare benefit

When hospices started growing in the United States, they were all-volunteer organizations with limited resources. In 1982, Congress changed that by including a provision to create a hospice Medicare benefit.

Today, Medicare recipients like Manny can receive full coverage of various hospice services, from home health care to pet therapy.

"I would consider it the gold standard for medical care in the United States," said Lisa Kalaf, executive director of Wuesthoff Brevard Hospice and Palliative Care.

For the Grubsteins, Medicare covers weekly visits and as-needed visits from Palmer, medication, Manny's wheelchair, and visits to the Hospice Care Center at the hospital when necessary.

What it does not cover is medical equipment such as Manny's shower chair and lifts for his wheelchair. The Amyotrophic Lateral Sclerosis Association provides some equipment for Manny to use, such as his voice amplifier.

Although patients must pay for some things out of pocket, the entrance of the Medicare benefit has improved hospice care overall, some say.

"With the Medicare benefit, there's a lot more consistency to provide quality care," said Bruce Wolters, executive director of Hospice of St. Francis based in Tituville, the oldest hospice in Brevard County.

The health benefit may have even changed the way society feels about end-of-life care.

"I think one of the things that comes to mind in the beginning when hospice started as a grassroots organization, people didn't think of hospice as a medical option," said Roberta van Dusen, executive director of Hospice of Health First.

Having hospice care covered as a Medicare benefit recognizes how imporant it is to have specialized care at the end of life, van Dusen said.

Manny has nothing but good things to say about the hospice care he's received under the Medicare benefit, he said. He wishes to issue this statement thanking the patient care coordinators who have helped organize his care:

"I'd like to thank Elisa Romero and her incredibly dedicated staff at the office as well as Denise Duncan and her incredibly dedicated staff at the Care Center in Rockledge who have helped make my life as great as it is. Thanks and God bless. Go Yankees."

'You'll miss me'

Hospice nurses, home health aids and volunteers frequently are asked the same question: How do they do it?

For each, it's a different answer. But most would agree their jobs don't get any easier.

"I don't think that you ever want to get used to it," said Patricia Roufe, senior home health coordinator for Hospice of St. Francis. "You want to respect the fact that its part of your life."

Some keep their boundaries with families thicker than others, but in most cases, hospice workers aren't afraid to develop strong bonds with their patients.

"It's that old adage, if you've never been loved you've never been hurt," Kalaf said. "Would you rather not have love in your life?

"We're all going to pass away. Would you rather be enriched by a relationship or not risk the loss?"

The former is the obvious answer for Palmer. The RN smiles at her patient with warmth, as she would a brother or best friend. She teasingly massages his bald head with her hand, prompting him to smile, too.

Manny knows she's as attached as he is.

"You'll miss me when I'm gone," he said.

Contact Phelps at 242-3612 or aphelps@floridatoday.com.

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