Grace and dignity

Published 12:00 am Sunday, January 30, 2005

As a mother of six, Joan Holmes bandaged scraped knees and kissed away midnight fears. As a health aide, she ministered to the sick and elderly, bringing comfort with her touch.

But the caregiver roles reversed five years ago when Joan was diagnosed with breast cancer for the second time in 20 years. This woman who had nurtured so many, found herself in need of the same loving attention.

"My mom worked in a nursing home. When she got sick, she wanted to be able to live at home," her son Eric Holmes said. "Not that there's anything wrong with nursing homes, per se, but she didn't want to go to one. I'm the youngest and I told her I would try to do what I could to make sure that didn't happen."

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For a while, Eric and other family members tried to take care of Joan at home without much assistance. When Eric, principal of Dawson-Bryant Elementary, built a new house, he included a room there just for his mom.

Joan, now 74, had beaten breast cancer before. But the latest diagnosis was beyond anything she had previously experienced.

The cancer that extended through her breast like a spider's web was inoperable. Radiation treatments burnt her chest and left a hole that required multiple skin grafts. Soon after, Joan fell and broke her hip. She has been bedfast since.

"At first, our hope was that she would recuperate," Eric said. "Eventually after being bedfast for a long time, she had such atrophy and her muscles got so small, that we've really given up hope on that."

A special need

Like so many families of terminally ill patients, the Holmes needed more help than they themselves were capable of providing. Cancer was taking its toll, not only on Joan, but everyone around her.

That's where the Community Hospice Care Center of Ashland, Ky., was able to fill the void. The facility, located at 2330 Pollard Road, celebrated its first year of operation this month.

Hospice provides three main services at its center as well as with its in-home care. First, it emphasizes pain management and symptom control, concentrating on care, not a cure. Second, the center offers respite care, allowing caregivers to bring their patient in for up to five days so those caregivers can have some time to recuperate themselves. Third, the center provides short-term residential care for patients with no one upon which to depend.

A physician referral is necessary for admittance to Hospice (patients must be designated as being terminally ill with a life expectancy of six months).

Since opening, Hospice has served more than 250 patients and their families from Boyd, Carter, Elliott, Greenup and Lawrence counties in Kentucky and Lawrence County, Ohio.

"It's something people need," said Angelia Clark, director of development at Hospice. "When someone is diagnosed as terminal, the caregiver or family member who steps into that care giving role starts wondering 'what am I going to do now? How do I take care of my family member?'"

"What we do is serve as a transition center. We can go ahead and directly admit the patient, have the caregiver come in and educate that caregiver how to take care of their loved one."

Hospice members work as a team to address all needs-the spiritual, the physical and the emotional-of patients and their families.

It has a full staff devoted to end-of-life care, including a physician, an on-site social worker, a spiritual coordinator, bereavement counselor and a host of registered nurses and volunteers.

Nurses are on call 24-hours a day, seven days a week to answer any questions or to provide support.

"It takes the burden away so that families can enjoy their family member," Angelia said. "ŠSometimes the caregiver just needs reassurance. Sometimes, just a phone call will be enough to get them through."

Home away from home

The care center itself can house 10 patients at any given time. It features a family room with a television, play and snack area along with a chapel for quieter reflection.

"It's kind of set up to make it homey for patients," said Hospice Director Kathy Ferguson. "The sofa pulls out into a nice bed. A lot of families like to stay overnight. We encourage them to go home and get some rest, but this allows them to rest while they're here."

While there, they will also get some much-needed relaxation with the help of Charlie, Hospice's resident Golden Retriever and therapy dog.

Although he can often be found at the nurses' station hiding from strangers, Charlie is always eager to lend a velvety ear to the needs of others around him.

"He works day and night, so he takes naps throughout the day," Kathy said with a smile.

Sometimes just running their fingers through Charlie's silky fur is enough to bring calm and reassurance to people so desperate for a little security during an insecure time.

"I think everybody relates to him," said volunteer Kay Badin. "My husband related to him. He would just stroke and pet him. Dogs are good therapy, you know. That's why I'll keep me a dog forever."

Kay's husband, Todd passed away in April after battling esophageal cancer.

"It's comfortable here. It's like a home away from home," she said.

Kay has been volunteering every Friday since June.

"I think all the people that volunteer here like helping people and want to comfort people because we understand (what they are going through)."

Since most care occurs in private residences, the team of professionals and volunteers ensures that all needed equipment is in place and special accommodations are made to make the patient comfortable.

For Joan, there is round-the-clock nursing and a team of professionals helping her each step of the way.

She is receiving respite care in the Hospice center, where she remains bedfast. Joan could not be interviewed for this article, but she will soon be returning home to live with Eric.

"They have just been a lifesaver for us," Eric said. "It means a lot to have someone who truly cares and who gives top-notch treatment in a state-of the art facility at a time in their life when they need that kind of care. It's something the family appreciates. It's been a wonderful thing."

Dispelling myths

Despite the benefits of Hospice care, its true mission is not always understood.

"A lot of times, you find the myth or the misconception that once Hospice comes in, you're going to die," said Linda Sullivan, Hospice's primary social worker. "But Hospice is about living and having good quality at that stage of our life and the end of our life where you can enjoy your family.

"You can feel good. Your symptoms and your pain are controlled therefore you have better quality to enjoy your life. People need to view Hospice, not that you're going to die, but that you're going to live life in comfort and dignity until the end."

In fact, some patients make a full or partial recovery.

"We've seen it time and time again," Angelia said. "If we can just get a patient soon enough and manage their symptoms and pain, they will have a higher quality of life that allows them to live much longer."

Linda has served as a social worker for the past 11 years.

"I had no idea of the rewards of working with terminally ill patients," she said. "The way I see it, when you get a patient who's diagnosed with cancer and they're told there's no cure, they're in a state of shock, depression and sadness. It's rewarding to come in and work with the patient and help them to get through it."

Part of getting through it is settling all the financial worries people have during a time of illness.

"Families have a fear that Hospice will take your assets, but we're a non-profit agency," Linda said. "We bill Medicare, Medicaid and private insurance. We take care of people that are indigent. No one is ever left behind."

Patients are cared for with love and respect, Linda said.

Hope while coping

Linda has been working with Joan and the Holmes family for the past few months. While cancer has weakened her body, Joan's spirit remains as strong as ever.

"She (Joan) has been very humble, very compliant and a joy to take care of," Linda said. "She always has a smile. I would say she's coping very well, considering what she's been through. She doesn't ever complain."

But Joan's family realizes the nature of her condition.

"You just don't know. It's not quite clear cut," Eric said. "Mom has good weeks and bad weeks.

"Š She has a great mind and aware of people around her and what's going on. She does have bouts with infection that causes her to be a little bit confused. But her mind is still very vibrant."

Eric, who's father died undergoing heart surgery in 1996, knows all too well the

pain of losing a loved one.

He admits he and his family are not quite ready for the possibility of losing Joan to cancer.

"I don't like to come to terms with it," Eric said. "I'm certain she's reluctant to think about it, too. It's kind of taboo in our family … just something we don't like to talk about and none of us want to admit it."

But for Eric, seeing his mother's strength and faith help him through the dark days.

"Just knowing what a caring, loving person and provider Mom was to all of us is comforting."

Hospice provides grief and bereavement counseling to both caregivers and patients dealing with terminal illness.

Every year, Hospice sponsors a camp for children who are grieving the loss of loved ones.

But nothing can really erase the pain completely.

"I don't think you really ever get used to it," Linda said. "All the hospice team gets attached to our patients."

Despite the obvious difficulty with working in such an environment, Hospice employees embrace their roles.

"It's not really a job," Angelia said. "It's a calling to be able to go in and do this everyday."

Hospice holds a special place in her heart, but not just because she works there.

"Even though I'm director of development, my mother was a Hospice patient. That's why I believe in it strongly. I've seen what it could do …. If this center had been built, I'm sure my mother would have wanted to be here. Nothing can compare with the care Hospice provides."