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Peg’s Legs: A “Share the Care” Organization for Peggy Chun:
My mother-in-law, Peggy Chun, was diagnosed with ALS (Lou Gehrig's Disease) in the spring of 2002. This was the same year that her amazing son, Eric, and I were married. What a journey we've been on as a family. We'd like to share a bit of our story here...
In the beginning of Peggy's battle with ALS, her brother Matt passed on the book that changed our lives - Share the Care: How to Organize a Group to Care for Someone Who is Seriously Ill. Peggy's sister, Camille, and best friend, Martha, followed the book's guidance to start up a support group of about 20 people to help Peggy and the family. Peggy was still walking, with the help of a walker, and I remember her saying, "I feel so silly, I don't really need this group, but thank you all for being here."
Just weeks after that first meeting, Peggy's leg gave way under her and she was in the hospital with a broken ankle. This suddenly catapulted us into needing that "Share the Care" group in a big way! And because of the progressive nature of ALS, the needs have been growing ever since, but luckily, so has our group...
The first thing we did was choose a name for ourselves ...we unanimously decided on "Peg's Legs." Peggy is a well-established artist in Hawaii and her name is synonymous with INSPIRING! Not only is her artwork incredibly inspired, Peggy has always lived life to the fullest, spreading her aloha to every person that crosses her path. It is because of her charm, her loving heart, and her joie de vivre that our little group has grown to over 60 Peg's Legs!
Peggy's battle with ALS has been a tough one. By November 2003, she was having difficultly breathing on her own. Peggy had to face a difficult decision...try to survive with her failing lungs or choose life with a ventilator. Peggy felt strongly that she had much to live for. And so, with the support of family and friends, she chose to go on a ventilator. We knew this was not going to be easy, since ventilator patients require 24-hour care. We also knew that Peggy would not thrive in a care facility. It was then that we all made a commitment to care for her in her home. While Peggy was in the hospital for her tracheostomy that November, the group met to discuss what Peggy's new needs were going to be and how we needed to reorganize. We enlisted the help of a private nursing organization to train our volunteers and help us through the transition. Peggy has excellent healthcare coverage, though not enough to cover around-the-clock care for the entire year. The plan was to train our Peg's Legs volunteers so that they could take over the daytime nursing hours.
We've been through many revisions of our structure and it is definitely a work in progress, but our group has successfully cared for Peggy since her release in December 2003. Our volunteers cover three shifts a day and nurses from a private nursing organization cover the overnight hours. Each Peg's Legs shift has what we call an "A" person and a "B" person. The "A" person is trained to suction and manage the vent and the "B" person is there to assist them and do light household chores. We also have what we call "C" people - they come by when they can and do what they can - read to Peggy, work on projects, and help her paint.
We have two people on every shift, three shifts a day - everyday! Some of the Peg's Legs are family, some are old friends, and some are new. Thanks to them, we are saving thousands of dollars every month in nursing expenses and giving Peggy the quality of life that she deserves.
As Peggy's care needs have increased, we have brought on supplemental care in the form of paid private hire caregivers. These caregivers give much needed respite to our hardworking volunteers. The out of pocket expenses to care for Peggy each year in her home are astronomical even with the help of our Peg's Legs, so we have to continuously work to raise money with artwork sales and fundraising, but we're a dedicated team!
Now that Peggy is totally paralyzed except for her eye movement, she communicates and digitally paints with a computer system called ERICA from Eye Response Technologies. This system has given her a renewed sense of independence as well as the most important thing for an artist - creative expression! What a miracle!
Our Peg's Legs group thrives because of Peggy's ability to open up her home and her life to all of us. Peggy's positive attitude and amazing strength gives us the energy to fight alongside her. Our Peg's Legs often say that it is a honor to be able to care for someone as wonderful and inspiring as Peggy. And because we are such a strong and large network, the workload is shared and it helps the energy stays positive in a tough situation.
We don't know what tomorrow will bring, but what we know for sure is that together, we have the power to create a beautiful life for a beautiful person.
If you would like to find out more about becoming a Peg's Legs member or would like more information on how to set up your own care group, please contact us.
Thank you for your support and aloha,
Kimi Chun
Chief Operating Officer
Peggy Chun, Inc.
February 2006 |
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Ka Pili me ka Makuahine |
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