By Alicia Doyle

The Writer
Specializing in Good News
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A woman's compassion, another's strength create lifelong bond

“One of the things we stress is the importance of touch; sometimes just holding their hand ... can make a world of difference,” Asha Wilkus Stone

Hospice volunteers become trusted friends in final days

Ventura County Star
Wednesday, July 1, 2009

At the end of life, most people need one person they can trust and confide in. Many times, they need someone to talk to, someone who will listen without judgment and create a calming presence in their final days.

Often, this is the hospice volunteer.

“When I was a volunteer, I felt that the patient was so relieved to be able to say anything and trust that it was not going to be met with all the emotions that family may bring to their bedside,” said Teresa Wolf of Thousand Oaks, a hospice nurse who trained hospice volunteers at Hospice of the Conejo for 11 years.

“The two greatest fears people have at the end of life are pain and being alone,” she said. “A hospice volunteer assists in alleviating emotional pain and helps the patient feel they are not alone.”

Of the 115,000 people involved in hospice care in America, some 95,000 are volunteers, and each year they give more than 5 million hours to helping dying people and their families, according to The National Hospice and Palliative Care Organization.

In Ventura County, there are two volunteer hospices — Hospice of the Conejo and Camarillo Hospice — which have from 60 to 100 active volunteers each at any given time, Wolf said. There also are about a dozen Medicare hospice nursing agencies in the area, which also have a certain amount of their own volunteers within their organizations.

Still, there is a growing demand for hospice volunteers because of the growing number of hospice patients who are choosing to stay in their own homes if possible, according to Wolf, who has since left Hospice of the Conejo to establish Our Community House of Hope, a planned hospice facility hoped to serve the isolated and low-income population in Ventura and northwest Los Angeles counties.

Additionally, “we have a vast number of seniors in our state who are more or less alone as they face the end of life and they want to stay in their own homes as long as possible, too.”

Generally, a hospice volunteer will be assigned one family/patient to support through the duration of the patient’s illness and will be asked to give from two to four hours each week to assist with needs they may have in their home.

“The volunteer will be providing respite care so the family caregiver can go out, or sit with the patient and be an emotional, social and spiritual support to that person,” said Wolf, adding that hospice volunteers don’t usually become involved in the medical care of the patient.

Rather, “they typically get very connected to the family and patient at this very poignant time of life. They are the calm presence and clear head that a family needs during the emotional roller coaster that they ride in the last months of their loved one’s life.”

Through years of watching new volunteers fill the seats in her class, Wolf often knew immediately who would make an excellent hospice volunteer.

“Usually it was someone who had had some important loss in their own life,” she said. “Some had had the support from hospice, while others had not had good support and wanted to help someone else have a better experience with their loss.”

They all seemed to bring a sense of spirituality with them, Wolf said.

“They were eager to help someone face the end of life and were not afraid to extend themselves even if it was going to be hard. They each had really looked at what dying meant to them personally and were eager to help others along that introspective journey.”

The final days of a person’s life are always filled with some thoughts of what they need to accomplish and what’s next for him or her.

“If they have a trusted friend who can help them a little with their mental checklist, sometimes wonderful things can happen in the family before their departure,” Wolf said.

“Many times, I have sat by the bedside of my hospice friends and they tell me of their very spiritual experiences as they edge toward the end of this life. When a volunteer is a really good listener, there are priceless moments to be shared at this very important and sacred time of life.”

— For more information on a hospice service near you or your loved one, Google “hospice” and “Ventura County” or the city where the care is needed.

Photo by Joseph A. Garcia: Ona Beth Donn listens as hospice volunteer Asha Wilkus-Stone reads from “One Thousand White Women: The Journals of May Dodd.”

Friends in deed

When her childhood friend became seriously ill, Asha Wilkus-Stone felt there was nothing more important than being with him through his final days.

“For the months prior to his death, I spent a lot of time with him, supporting him and his family through the experience,” recalled Wilkus-Stone, 30, of Ventura. “It was fundamentally life altering. I ended up learning how love and service are these really practical things that everyone deserves.”

The experience was so profound, she became a volunteer at Assisted Home Hospice, an organization that provides compassionate end-of-life care to patients and their families through a range of support, including home visits.

“Volunteers for Assisted Home Hospice essentially become the patient’s companion,” explained Marianne Cody, volunteer coordinator for the Ventura branch. “They read to the patients, play music, write letters. ... Basically the volunteer finds what interests them.

“One of the things we stress is the importance of touch; sometimes just holding their hand or giving them a hug can make a world of difference ... to know that someone cares.”

When Wilkus-Stone became a volunteer just over a year ago, the first challenge she faced was working with patients who were incoherent.

“The first people I visited taught me a lot about being patient and letting go of expectations,” she said. “I had to reconcile the fact that there’s this potential to have a very connected and eye-opening experience with the people in hospice. Essentially it’s just about accepting a person exactly where they’re at and leaving any other agenda at the door.”

Enter Ona Beth Donn, a 71-year-old patient with Assisted Home Hospice since December who has been suffering from multiple sclerosis for 22 years.

“She was relatively stable and mobile and could use a wheelchair with assistance until last fall, but by November she was declining in ability and was hospitalized for a week,” said her husband, John Donn.

With complications from MS and heart insufficiency, Ona now resides at home in Oxnard at Hollywood Beach, with support from Assisted Home Hospice.

“Home Hospice provides several things,” John said. For instance, “the home health aid comes in three times a week for a couple of hours to bathe her, a nurse visits twice a week, and she also has a visit from a social worker and a chaplain every two weeks.”

But the visits from Wilkus-Stone are particularly special, he said.

“It’s a very nice, different contact for her,” he said. “Probably the most difficult thing a person in this situation faces is the inability to do anything on their own. Ona is confined to bed most of the time and she’s on oxygen. We have tanks so we can take her out in a wheelchair sometimes, but there’s very little variety and inevitable boredom.”

The stimulation of a variety of interactions with people including Wilkus-Stone helps his wife and keeps her more alert, he said.

“Asha is like a dear friend when she comes through the door,” he said. “Ona’s face lights up when she sees her.”

When Wilkus-Stone first met Ona Donn and her family, “I immediately liked them,” she recalled. “Their love for each other runs deep, and they are doing their very best for Ona.

“Their effort is so admirable and from the beginning I felt strongly that I wanted to do what I could to help their effort to flow smoothly,” she said. “I think the care from hospice frees them up somewhat so that they can absorb and process on their own.”

Visiting with Donn since February, Wilkus-Stone said they “usually spend one evening a week together and occasionally a Saturday here and there.

“We’ve been reading a book but we also spend time talking about Ona’s life or life in general, perhaps touching on lessons learned or certain truisms. Sometimes it’s quieter and we just take in the beach, the ocean and the horizon.”

Among the most valuable resources of hospice care — and among the things that most distinguishes it from traditional healthcare — are volunteers like Wilkus-Stone, Cody said.

“Those of us who have had the privilege of working with hospice volunteers know that they are very special people,” she said. “These are individuals who for the most part have full-time jobs and families but still find the time to spend with what start out to be strangers.

“Hospice volunteers are the key ingredients to the hospice team; they are a primary resource of emotional bonding crucial to the relationship of hospice to the patient and family.”

For Wilkus-Stone, being a part of the matrix of support that hospice offers is incredibly rewarding because she sees how much it matters to Donn’s life and to her family.

“My hope is that Ona and her family feel that they are supported and what they’re going through matters to me and to the other people involved in Ona’s care,” she said. “Ona has managed a lot of challenges, but her character shines through. Her brilliant smile and the way she lights up will always remain with me.

“She is a reminder of how graceful someone can be, while also being strong. She has a wonderful sense for the delicate nature of life, for humor and for happiness.”

On a personal level, volunteering with Assisted Home Hospice gives her a sense of purpose because she knows that hospice makes a difference at a crucial time in people’s lives.

“Being there for someone or a family is a way for me to express my belief and my hope that someone will be there for the people who matter most for me and for myself when the time comes,” Wilkus-Stone said.
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