GIFT OF LOVE
Hospice volunteers bring comfort by the bagful
By Rebecca Allen
They have gathered on this sunny Friday morning in a light-filled room to help people who are dying.
It is not somber work. The eight women and one man chat as they fill blue cloth bags with items meant to bring comfort to patients in the final stage of their lives. They form an efficient conga line, stuffing the bags and handing them off to have a card tied to the handle.
The first thing into the Bag of Love is a comfy red blanket rolled up like a giant burrito. Then playing cards to encourage interaction with visitors. Lotion to promote touch. Letter prompts to help patients write end-of-life letters to loved
COMFORT >> PAGE 12
Vana Surmanian of Helping Hands Hospice Guild delivers a Bag of Love, with a blanket, lotion and other goodies, to Edna Schooler, 98.
PHOTOS: MICHAEL GOULDING — CONTRIBUTING PHOTOGRAPHER
Michelle Wulfestieg, left, executive director of Southern California Hospice Foundation, and Surmanian roll blankets for Bags of Love that will be distributed to hospice patients. Many of the items in the bags are donated.
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ones. Hand sanitizer. Shampoo. A list of resources, pens and a notebook. A batteryoperated candle and a copy of the Serenity Prayer.
Vana Surmanian, who three years ago organized the Helping Hands Hospice Guild, gets items donated and buys the rest. She allows that she spends a lot of time in the dollar store.
All 100 blankets today have been contributed by an anonymous donor, along with 500 more for future bags. Guild member Todd Johnson works for Medline, which makes and distributes medical supplies; he has brought the bottles of hand sanitizer and shampoo.
The guild is an arm of Southern California Hospice Foundation. The foundation doesn’t provide hospice care but works closely with hospice providers who do. The foundation’s aim is to raise awareness about hospice and grant end-oflife wishes for patients.
Guild members support the foundation and pay annual dues of $50 for the privilege of donating their time and energy.
“We wanted to involve the community in a fun philanthropic way,” says Michelle Wulfestieg, 35, executive director of the foundation. After the bags are filled, they are taken to patients by nurses or other members of the hospice team.
Different kind of care
“Hospice is the best-kept secret,” Wulfestieg says. “The most common response to the care is, ‘Why did it take me so long to get this help?’ ” Hospice is available for patients who have been given up to six months to live by their doctors. The care allows patients and their families to focus on quality of life, relieving pain and suffering.
According to a Time/ CNN poll, 70 percent of Americans would prefer to die at home. But the Centers for Disease Control and Prevention reports that only 25 percent actually do.
In 2002, the Southern California Hospice Foundation was established to promote help and pain relief for terminally ill children and adults.
The program was created under a law signed by President Ronald Reagan in 1982. Each case is handled by a team of caregivers that includes doctors, nurses, home health aides and volunteers who provide companionship.
It was just such a team that helped Surmanian’s father and later her sister as they reached the end of life. Her father, Monte Smith, had Alzheimer’s disease and her sister, Vickie Williamson, died of metastatic breast cancer.
“I saw how the hospice nurses and volunteers treated them with respect and care,” Surmanian said. “Their goal was to help them deal with pain and keep them from suffering during their last months of life.”
It was a comfort to her when she couldn’t be with her dad, as her parents lived in Colorado and she lives in California. Her father had hospice advocates while in assisted living.
“My father had Alzheimer’s, and the nurses and volunteers were so loving. He couldn’t stay home. My mom couldn’t pick him up off the floor any more.”
The hospice workers made sure he was properly bathed and that he took his medications. If he had a fall, they made sure he was treated.
On the day he died, Surmanian, her mother and her sister gathered in his room.
“We were talking about going to get some dinner, and I saw the fear in his eyes, that we were leaving him. So I went and got a bottle of wine and some cheese and bread and we stayed with him.
“His hospice nurse took off her badge and said, ‘I’m going to have a drink with Monte!’ ” After he died, hospice workers continued to look in on Surmanian’s mother, helping with grief counseling and contacting her to see how she was doing.
Still, Surmanian’s sister, who was diagnosed with breast cancer two years before their father died, didn’t want hospice. She didn’t want to believe that she was going to die.
“The last few weeks it was just impossible,” Surmanian said. “I called hospice and the intake nurse came but said, ‘If she doesn’t consent, we can’t help her.’ ” The first thing Williamson wanted to know was how much it would cost her. The care is covered by Medicare and private insurances. Then she wanted everyone to leave the room so she could talk to the nurse alone.
Surmanian’s eyes fill with tears at the painful memory. “She was scared to death of dying, and she thought I wanted to euthanize her! Nothing could have been farther from the truth, but she was just so frightened.”
After Williamson agreed to hospice care, “she couldn’t say enough wonderful things about the team,” Surmanian said. Like so many others, Williamson wondered why she didn’t get help sooner. She died in April, comforted by hospice care.
“It reaffirms why I do what I do,” Surmanian says.
Connecting with a stroke patient
The person who recruited Surmanian to the foundation is Wulfestieg, the director of the hospice foundation. What you notice first about Wulfestieg is the abundance of golden curls and the dazzling smile. As she moves, she walks with a pronounced limp. She greets me warmly and offers her left hand to shake.
When Wulfestieg (then Taylor) was 11 years old, a stroke paralyzed her right side. It was caused by a congenital condition that caused bleeding in her brain. She had to relearn to walk, get dressed, tie her shoes and use a computer. She did all those things, with great effort, and even joined her high school volleyball team. In her senior year of college, she took a death-anddying class and was assigned to Betsy, an 84-yearold patient in a nursing home. Betsy, whose left side was paralyzed by a stroke, had difficulty speaking and was embarrassed to try. But after she learned that Wulfestieg also had suffered a stroke and had paralysis, they bonded. They visited every Tuesday at 4 p.m.
Betsy had a clock installed on her wall so she would know when Wulfestieg was going to arrive.
When Betsy died, Wulfestieg was asked to give the eulogy at her funeral.
The college death-anddying class helped chart the course of Wulfestieg’s life. She met the man she would marry, Steven, in the class. And in 2004, she found her passion and a job with hospice after graduating from college.
Wulfestieg had another stroke as a young bride at age 25 in 2008 and had to have brain surgery. One of her main goals as she recovered was to return to her hospice patients at work. To do that she had to type, talk, give speeches, plan events, raise funds and meet with patients.
Today she does all those things. She still has limited use of her right arm and walks with the aid of a leg brace.
Her experience has helped her understand how precious life is. In her memoir, “All We Have Is Today,” she writes: “Knowing that we all have a limited amount of time on this earth, I thought about how I could make a bigger difference in my hospice patients’ lives. I thought about ways I could help bring them more comfort and more dignity during the most sacred time of life.”
Under the hospice law signed by Reagan, 5 percent of hospice care has to come from volunteers.
The foundation partners with several hospice providers that use a team of paid doctors, nurses, caseworkers and therapists. Hospice volunteers go through rigorous training and undergo a background check and a test for tuberculosis. They visit patients to give emotional support and companionship.
But foundation volunteers like the Helping Hands Guild have a more relaxed training because they only occasionally go to a patient’s bedside to take a care bag or help make a wish come true for a dying patient. Their main focus is raising awareness of hospice and raising money for the foundation. Their next meeting is a wine and cheese tasting at a venue where each guild member can buy a bottle and donate it to the annual wine soiree the foundation will hold in September at the Marconi Automotive Museum in Tustin.
They have a social once a quarter, like a jewelry party, where part of the proceeds go to the foundation.
And they have fun. As they put together the Bags of Love, they chat about Surmanian’s daughter’s wedding. Arianna Vaughn’s sister is also getting married. And they bemoan that it is Wulfestieg’s daughter’s last day of kindergarten. As it turns out, volunteer Mary Chiaverini’s grandson had his last day of school that day, too.
Soon the bags are full and Lauren Uranga and Surmanian tie cards onto the bag handles. Sandy Sligar loads down both arms with so many bags that she has trouble getting into the elevator. She transports them to a hospice in Riverside where she lives.
A gift of love
In Mission Viejo, Edna Schooler, 98, is sitting in a recliner with her feet up. It’s 100 degrees outside, but she has on a white sweater, khaki pants and socks under moccasins. She’s in the living room of the Tender Leisure Care home listening to a caregiver sing karaoke.
She greets her visitors, Surmanian and Wulfestieg, who have come to deliver a Bag of Love.
When Surmanian gives her the bag, Schooler asks, “Do I deserve this?”
She pulls out the red fuzzy blanket. “Oh good” she exclaims. “I’ll be nice and warm. “
Next she extracts a bottle of shampoo. “Are they trying to tell me I’m stinky?” she asks, getting a laugh from all assembled, including three other residents of the board and care, two caregivers, her grandson Doug Venanzi and a nurse and caseworker from Companion Hospice. Venanzi reads her the card: “We hope this ‘Bag of Love’ brings you some comfort. Please know it was created by volunteers who care.”
“That’s so nice,” Schooler says. “Sometimes we need more love than you can imagine.”
She turns to Surmanian and Wulfestieg and says, “I remember when I did some of the things you are doing. It’s always a great feeling to know you have helped someone.” Her face crinkles and it looks as if she might cry.
Venanzi asks, “What’s the only thing missing from the bag?” And answers for her: “Chocolate.”
“Did you eat the chocolate?” she asks with mock indignation.
“Oh, I would never do that!” he says.
“I hope it made you sweet.”
It’s a good day for Schooler. Some days she is confused. She has vascular dementia, but with blood thinners and other medications and a lot of love, she has come back from pneumonia that she caught in the hospital in April.
When she was released, Venanzi insisted that she come to Tender Leisure Care, one of the boardand- care homes the family owns. His father, Stephen, is a psychologist with the company.
She was in such bad shape that Venanzi, who is a nurse, says, “I honestly didn’t give her three days. She barely recognized me. I insisted that she come and stay here so we could love her back to being alive.”
In fact, she is doing so well that she was taken out to get her hair styled and a manicure the week before this visit.
Tender Leisure Care has six beds in a house on a residential street in Mission Viejo. You would never guess from the outside that it is a care home. The backyard includes an aviary with finches and doves and a molting parakeet.
It’s where the staff grows squash, corn, asparagus, tomatoes and Concord grapes. Trees provide figs, blood oranges, Meyer lemons.
The Venanzi family hails from Italy, and they care a lot about food and drink. Schooler shares her recipe for homemade root beer: “We used root beer extract. We had to wash the bottles and put them out in the sun to make sure there were no germs in them. Then we filled the bottle with root beer, capped them and put them back in the sun for the afternoon. Then they went in a dark closet for five days. Then we had root beer all summer!”
This is the first time Venanzi has heard the root beer story.
“You can tell how much she enjoyed the visit,” he said. “She just lit up. It’s the attention and the care. It means a lot.”
After a long visit with Schooler, Surmanian heads off to a dollar store to try to find more playing cards for the Bags of Love. She likes to get the packets with two decks for $1. She wants to spend the guild’s funds wisely.
“I like a bargain!” she says brightly as she gets in her car and zips away.
Wulfestieg is off to plan a wedding for a hospice patient whose last wish is to get married to her companion of 10 years before she dies. She has to go visit the venue. And later will meet the patient at a bridal shop to pick out a wedding dress, bridesmaids’ dresses, shoes and jewelry. All of it will be paid for by the foundation.
It takes a lot of planning and effort to bring comfort to the dying. And they are delighted to do it. This is one in a series of stories underwritten by the SproutOC Project, a registered nonprofit that helps local charitable organizations tell their stories and fund their initiatives in ways that help them grow. Learn more at sproutoc.org
“I saw how the hospice nurses and volunteers treated them with respect and care. Their goal was to help them deal with pain and keep them from suffering during their last months of life.”
— Vana Surmanian, founder and president of Helping Hands Hospice Guild
Doug Venanzi kisses his grandmother, hospice patient Edna Schooler, at Tender Leisure Care in Mission Viejo as volunteer Vana Surmanian watches.
MICHAEL GOULDING — CONTRIBUTING PHOTOGRAPHER