Artist Peggy Chun is surrounded by people who provide assistance for her as a patient with Amyotrophic Lateral Sclerosis (ALS) or more commonly known as Lou Gehrig's Disease. Pictured are Kimi Chun, left, Tiare Finney, Martha Torney, Chun, Marita Salassa and Pat Wassel.
Magic afoot
Caregivers for Peggy Chun
will discuss roles in helping
the Lou Gehrig's disease patient
The responsibility of short- or long-term care for a loved one can be overwhelming for families. When artist Peggy Chun was diagnosed with ALS (known as Lou Gehrig's disease) in the spring of 2002, her family was faced with the crisis of providing around-the-clock care as a result of the debilitating motor-neuron disease. Long-term care facility placement was a last undesired resort, but thankfully, family and friends came together to create a workable solution.
Kimi Chun, Peggy's daughter-in-law, coordinated Peg's Legs, a volunteer group that provides daily care in partnership with health care providers. The network of family members and friends alleviates stress on primary caregivers and provides Peggy with peace of mind 24 hours a day.
"HerStory"
Fourth annual women's conference sponsored by the Junior League of HonoluluWhere: Hilton Hawaiian Village, Tapa Ballroom
When: 7:30 a.m. to 4 p.m. Friday. Morning sessions include "She's Got Game: Crash Course in Yoga, Pilates and Strength Training"; "Share the Care: An Inspiring Caregivers Network"; and "Small Spaces, Small Budget: Hawaii Homework." Afternoon sessions offered: "Strategic Parenting," "Composing Your Career" and "Heckathorn Hash: In the Kitchen with Joan & Glen."
Admission: Full day $110, $95 for a half-day with lunch
Note: Keynote speaker astronaut Sally Ride will discuss the importance of technology today. Filmmaker Edgy Lee will present the end-note speech.
The group grew over time and now includes 30 regular caregivers, 70 "floaters" who pop in occasionally and 250 individuals who are on the Peg's Legs e-mail update list.
Kimi Chun will be among the participants in a panel discussion, "Share the Care: An Inspiring Caregivers Network" at the HerStory women's conference Friday. HerStory is presented by the Junior League of Honolulu as an annual empowerment event for women.
Cory Lee, owner of Health Care Alternatives, and Martha Torney, a Peg's Legs volunteer, will also discuss Peggy Chun's network and discuss quality-of-life issues for all involved.
Kimi Chun said the speakers feel it is their responsibility to share this message: "to know that you don't have to face illness alone, but in order to get support that you need, you have to be willing to open your home, not to mention your mind and your heart, to others and say 'yes' to help."
Although this seems like sensible advice, Kimi said it can be difficult to practice for many local families who grew up in cultures that tell them not to bother anyone else with family problems.
"If you could see all of the trials and tribulations we've been though and still go through, you would understand that we're not miracle workers and that it hasn't been an easy road for us," said Kimi. "When we do hit bumps in the road, we just pick ourselves up and keep going."
The group structure, organization and techniques have all evolved, she explained. "As a group, we have the understanding that we are committed to giving Peggy the best life possible. We are not just keeping Peggy alive, we are there to help her live -- and that is a key distinction to make when you're talking about home care. Peggy helps set the mood for this type of thinking."
Peggy is not the only person who benefits from the volunteer program. The group has been able to relieve her family of some of the financial burden of nursing care. And knowing that no one person needs to sacrifice his or her own life to take care of an ill family member is even more reassuring. Kimi, speaking of her life with Peggy's son Eric, said, "We have gotten married, had a baby, taken over the management of Peggy's business, actually grown her business and are now focusing on how we can teach and share everything that we've learned on our journey," she said.
They are compiling of all of Peggy's medical resources, contact information and Share the Care resources that will eventually be available at peggychun.com to help others with ALS. "I think the information that we can share will be applicable to those with any illness or handicap, as well as those caring for the elderly," Kimi said.
THE REST OF the group is diverse in its experiences, interests, politics and religious inclinations, creating an intellectually stimulating environment for Peggy, who volunteer Martha Torney describes as "an intelligent, passionate woman who does everything with enthusiasm.
"Every day is a new adventure. There is always someone here to help me. I'm always outside, and I get to paint every day." --Pegge Chun, artist
"Every Friday, a wonderful group of friends take her around the block to Tiare Finney's house for a theme lunch where laughter is the most common item on the menu. Mark Turner, a fellow artist, helps her paint each Monday -- what a gift. The infusion of all these friends help define Peggy's life as fulfilling and joyful," Torney said. "I know I am considered a volunteer of Peg's Legs, but she is a friend that I love very dearly that I am helping. Watching the disease attack and rob her of freedom breaks my heart."
Peggy's annual women's party every January had to be canceled this year because it was not in her best medical interest to have 200 people partying at the house. Similarly, outings are labor-intensive experiences limited to no more than four hours. "I would love to see her get out more, but it is hard," Torney said, pointing out that in spite of everyone's best intentions, ups and downs are common, and being a caregiver is not "a bowl of cherries."
Yet, Peggy maintains a positive attitude that keeps her caregivers going as well. Though wheelchair bound, Peggy continues to paint daily. When the disease weakened her right hand, she taught herself to paint with her left. After recently losing the strength in her left hand, she has started painting with her teeth.
"When I unable to do my normal activities, people will be able to do that for me," she said, noting that she makes a list each week to inform caregivers of her needs.
"It's amazing ... I never get depressed," said Peggy. "Every day is a new adventure. There is always someone here to help me. I'm always outside, and I get to paint every day."
She cannot express enough gratitude toward Peg's Legs volunteers. Among them is Cory Lee, who met with Peggy about two years ago to discuss alternative care strategies.
"Peggy desperately wants to live and wants to live large," Lee said, which meant long-term care placement was not an option. "We all knew this would kill Peggy's spirit. A great visual would be the caging of a beautiful, rare and endangered bird," Lee said.
"We needed to be very creative and out-of-the-box thinkers. It was highly unrealistic to staff Peggy with 24-hour nurses. Our island resources are so tight, and the family's resources would not support this kind of financial burden."
So, Lee staffed Peggy with a mixed level of health professionals who took on an active role of teaching Peggy's assembly of volunteer caregivers. "The greatest task has been ensuring quality, safe, competent care at all levels. It was very time-consuming and challenging at times, but the end goal was well worth it."
Torney added: "The experience has allowed me to learn skills I never considered before, such as trachea and ventilator care. There have been some nerve-wracking moments, such as your first experience when a breathing tube becomes dislodged, but overall it has been a positive experience."
Lee feels honored that she was afforded an opportunity to be part of the process. "To me, Peg's Legs epitomizes the concept of 'it takes a village' and truly demonstrates the humanity of the human spirit. Men and women from all walks of life, of diverse backgrounds, of ages between 20s to 60s have joined forces to do this. There are people involved that Peggy never even knew before.
"I thank God every day for crossing her path with mine," said Lee. We should all have a Peggy Chun in our lives."
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