Share The Care™ - How to Organize A Group to Care for Someone Who Is Seriously Ill
InstanceEndEditable
  • STC Home
  • STC Non-profit Organization
  • Donate
  • The Story
  • The Model
    • Table of Contents
    • Excerpts
    • Form Downloads
  • Purchase the Handbook
  • Current Events
    • What's New
    • Appearance Calendar
    • Press & Media
  • About Your Group
    • Your Stories
    • Your Photos
  • Your Advice
  • Resources
  • Contact Us
  • SRC Sponsors
InstanceEndEditable
Your Stories
Sharon Groff
"The Swimmer's" Share The Care™ Group
Marshfield, Wisconsin

Part 1 by
Sharon Groff


The best way to explain our journey to Share The Care™ is to read Sharon’s speech given at the initial gathering of the group on January 31, 2003:

"My journey with Breast Cancer began in February 1996.  My emotional journey with Breast Cancer began 40 years ago when my mother dealt with the disease and died when she was 48 years old and I was 11.  Both my children have passed the age of 11 in the past 7 years – a milestone for me.

Things have changed in the past 40 years.  Both my mother and I had mastectomies but that is about where the similarities end.  After my initial treatment I had 3 years of “remission”.  In 1999, 3 1/2 years ago, I was diagnosed with metastasis in the liver.  I have been under treatment since that time.  I’ve had:

  • 3 hormonal therapies
  • 12 different chemotherapy agents
  • 2 different radiology procedures including radiofrequency ablation and chemoembolization
  • 14 different treatment plans
  • I’ve lost my hair 3 times and may be losing it again with current therapy
  • Had 6 hospitalizations
  • 2 port-a-catheters (2nd is still working after2 years)
  • My doctor told me once I would need to get over my aversion to needles. I’m still not crazy about needles but I’ve learned to get poked – probably about 300 times over the past 7 years.
  • I’ve also explored the alternative therapies, including energy work, herbal supplements and meditation.
  • Most importantly, I’ve learned how to live in the midst of this.  We have vacationed, hiked, cross-country skied, followed our children activities, gardened and have enjoyed a good quality of life.

There are other differences in the past 40 years.  Physicians have been honest.  I have received optimal care at Marshfield Clinic without traveling around the country.  Options exist in treatment and I’ve been able to choose my path. 

Currently I have chosen a hormonal therapy and another chemotherapy agent.  If nothing emergent occurs the next CAT scan will be March 6th.

One of the things I want to explain is why I am interested in this group at
two reasons:

• In the past many of you have already been offering a helping hand and carried us through some stressful times.  It has always been a concern of ours that others take care of themselves and their families first and help as they can.  Friends always seem to find time but I really like the idea of Share The Care™ where people plug in as they have time both physically and emotionally and having coordinators will offer a comfort zone where people can come and go.
• The second reason is a result of recent therapies and the CAT scan of the lower abdomen on the 20th of January.  Over the past 3 months I’ve had 3 CAT scans which all showed increase of tumor activity in the liver and the lymph nodes in the hepatic area.  I’ve had 2 different therapies during those 12 weeks.  The therapy in December and January resulted in a reaction to medicine necessitating an ER visit and a stay at St. Joseph’s overnight.  The cancer continued to grow.


After the news on the 20th I had a good cry, a sleepless night, but the night allowed for some clarity of vision.  It was clear to me that the “Share The Care™ ” which I had heard about and talked to friends about was my next step.  Mindy was willing to help me through this.

I see this as a time to reduce unnecessary stress and prepare for the possibility of death in the near future.  There, I’ve said the word death but I do not plan to use the D word again tonight.  The D word carries a lot of emotion for me and probably for many of you.  I prefer to view this as a time of transition.  All of us in this room are transitioning however my CAT scan indicates a higher probability that I might be transitioning earlier.  I deeply desire the transition to be as graceful as possible.  I am fortunate to have the time and support to seek this goal.

I am overwhelmed with tonight’s response.  As a family we are all a bit embarrassed with the attention when we know many suffer in far greater ways than we have.  Our hope is that the journey will allow for growth in all of us and that the Coalition will be able to assist others with serious illnesses.

During medical emergencies I often cannot think clearly and really can’t plan.  It is my hope that in spite of what may be happening:

•  Sonya & Marcus will continue their lives becoming independent,
responsible and respectful of others.
•  Brian will be able to meet his patients with wisdom and compassion.  He
will not be worrying about family life while at work.  His stress load will be reduced so we can continue to experience quality time together.
•  For myself I don’t want to worry about family.  I want to be present in the
moment wherever that may be – chemo room, hospital, or my favorite  spot – the sofa!

Things can medically change very quickly.  We will send out e-mails when my medical status significantly changes.  If you have questions you can e-mail or contact Mindy and Jean who will know what is going on.  I usually respond to e-mails and phone messages within 24 hours.

Thank you for being here and thank you for honoring our 9 X 9 club – Where we meditate on Calmness, Compassion in the Community, and Peace for the World.

 

Part 2 by

Brian Ewert
(Sharon’s husband )
 “The Swimmers” and their experience

The group’s name came from the song, “Swimming to the Other Side” by Pat Humphries (http://www.pathumphries.com/swimminglyric.html).
It communicates the communal nature of the journey we are all on.

Share The Care™ allowed us to more easily walk the path of end stage breast cancer. Terminal illness in middle age presents it own unique challenges: the children are not yet raised and independent, the primary care giving partner needs to go to work, there are elderly parents of the patient who also have needs.  Share The Care™ provided an excellent mechanism for meeting these challenges.  When I needed to be at work there were volunteers to take Sharon to medical appointments.  When the children needed rides chauffeurs quickly signed up.  As Sharon's strength decreased Share The Care™ members signed up for "Quiet Company."  Each day from 11:00 AM - 1:00 PM a volunteer would be with Sharon.  Their presence eased my anxiety of having her alone for extended periods of time while I was at work and children were at school.

As Sharon became more ill she became more spiritual and meditative.  She developed an interest in labyrinths and meditative walks.  As a family we decided to install a labyrinth in the back yard. We finished the labyrinth four months before her death.

Share The Care™ provided transforming experiences for many of us.  When we first started building the labyrinth one of my more religiously conservative friends asked, "What do you want to do that for?!"  My response was that, "It is a religious symbol with vague antecedents."   As the labyrinth was nearing completion he was one of the volunteers who showed up to help.  When Sharon was increasingly weak and more wheel chair confined that same friend had the "Quiet Company" duty one day.  They spent their time together with him taking her around the labyrinth in the chair.

Sharon had maintained a strong passion for charities that address hunger.  As part of that commitment she had been involved with planning the Crop Walk in Marshfield. Her last Crop Walk was symbolic of the impact of the group. I was on call the weekend of the walk so was not available to be with her on the walk.  I am still warmed by looking at the pictures of her in the wheel chair beaming with her escorts
surrounding her. We had plenty of quality times in her last year.  My absence on that day actually enhances the positive power of the day.

Through the Share The Care™ group a Friday morning meditation session was held at our house. As Sharon became more spiritual in the last six months these gatherings were a source of strength and calmness.  The organization of the group occurred completely independent of my input or approval.  There were many wonderful events that occurred during that last year of her life for which I neither needed to plan nor sign off on.  That was a gift (and a lesson) for me.

At the time of her death Share The Care™ members gathered for meditation.  She died at 3:00 PM on Thursday, October 16, 2003.  By 5:15 PM 24 of us gathered around her body and Susan led us through the Phowa practice.  At the bedside were Buddhists, Catholics, conservative evangelicals, liberal Protestants, agnostics, and atheists.  None of that matter.

"The Swimmers" were a phenomenal group.  A lot of it happened in an almost imperceptible fashion.  The apparent effortlessness of the endeavor was due to the model as well as the incredible organizational skill and compassion of Jean and Mindy, the co-captains.

Mindy Gribble, a Parish Nurse and facilitator for Sharon's Swimmers, is currently working in the Marshfield, WI. area to nurture "user friendly' access for anyone considering starting a group. Through the local "Circle of Life Community Coalition" a free "Share The Care™ Station" has been started, providing the community with a well utilized lending library of Share The Care™ books and videos. The Coalition has also provided the community educational presentations on the model. Mindy hopes to honor the joy of being part of Sharon's caregiving family by "building bridges" to help others move from contemplating Share The Care™ to actively experiencing it's blessings.



To see Sharon and her Share The Care™ group known as The Swimmers.

To the Your Stories Index
To the Your Stories Photo Gallery Index


©Copyright 2008 ShareTheCaregiving™ , Inc. All Rights Reserved. This written content may be copied in full, with copyright, contact, creation and information intact, without specific permission, when used only in a not-for-profit format. The content may not be altered in any manner without permission from ShareTheCaregiving™ , Inc. If any other use is desired, permission in writing from ShareTheCaregiving™ , Inc., is required. ShareTheCaregiving™ , Inc. is not responsible for any claims of any nature arising out of any individual's participation in a Share The Care™ group.
1995 Cover design and illustration by Mullen & Katz
2004 Cover Design by Jennifer Lew
Website design & execution : Creative Art Link


Copyright 2012 ShareTheCaregivingTM, Inc. All Rights Reserved. This written content may be copied in full, with copyright, contact, creation and information intact, without specific permission, when used only in a not-for-profit format. The content may not be altered in any manner without permission from ShareTheCaregivingTM, Inc. If any other use is desired, permission in writing from ShareTheCaregivingTM, Inc., is required. ShareTheCaregivingTM, Inc. is not responsible for any claims of any nature arising out of any individual's participation in a Share The CareTM group.
1995 Cover design and illustration by Mullen & Katz
2004 Cover Design by Jennifer Lew
Website design & execution : Creative Art Link