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| Project Compassion also offered a record number of community workshops in 2006, including: | |
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The Art of the Condolence Note
with Author Carol Henderson Writing the Sacred Psalm: A Workshop with Ray McGinnis An Evening of Grief, Healing and the Arts Rituals of Remembrance for the Seasons of Grief Family Milestones and Midlife Clutter |
Project Compassion Creates
Teen Support Teams
In 2006, Project Compassion created Teen Support Teams to
help children, teens and adults living with cancer. One team provided
musical evenings and game nights twice a week this summer for Caring House
guests going through cancer treatment. Jordan
High School volunteers (pictured with some Caring House guests) include team
leaders Grace Taylor and Jenny Walters, Emily Reep, Terrell Hicks, Erin Turner
and Hannah Lingafelt. Ryland Bishop
is not pictured.
Many
teen volunteers had experienced cancer in their families; one was diagnosed with
cancer this summer. Talking about
the experience, a 15-year-old volunteer summed it up: “I had no idea how much they would
appreciate what we did. They were
smiling, laughing, talking about life. It
changed my thoughts about what it means to have cancer.
It made me think about what really matters. I’m thankful for everything I have in life.”
Elizabeth's Friends Honored
for One Year of Service
Elizabeth is a 21 year old young woman living with Batten
Disease, a rare illness affects 2 of every 100,000 children. This illness causes mental impairment, seizures, and a
progressive loss of sight, motor skills, and the ability to communicate.
There’s no prevention and no cure.
Elizabeth’s family cares for her at home and the caregiving challenges
are tremendous. Her story was
featured in May in Duke Divinity School magazine’s Building Bridges article.
“Elizabeth’s Friends” Project Compassion’s Support
Team in partnership with her faith community, just celebrated one year of
support! The team has 12 core members; others join in as needed.
They have coordinated to provide a meal nearly every other day for a full
year: over 150 meals so far! Members
have also provided “respite, love and lots of prayers.”
Thanks in part to the support, Elizabeth is stable enough for the
family to spend Thanksgiving at the beach!
On the one year anniversary of the team, Elizabeth’s parents wrote,
“When things get too hard for you, God sends help like Elizabeth’s
Friends…. This is the type of program people all over the country should
sponsor and support.”
“Building Bridges”
Helping people plan ahead for end-of-life wishes has been
a core Project Compassion initiative since we began almost 5 years ago.
However, two major news events in
2005 have given us remarkable opportunities to engage people both locally and
nationally around end of life planning matters.
The
Sunday New York Times
Features Our Workbook
on Planning Ahead
On
January 2, 2005, the Business Section of the Sunday New York Times published a
feature article entitled: “After
Writing a Will, You Still Have I’s to Dot”. This article was inspired by Project Compassion’s
collaboration with Dr. Trudy Couch, author of the workbook Passing on
Thoughtfully.
Passing on Thoughtfully is a
remarkable 32 page workbook that helps people gather, organize, and communicate
important information about legal affairs, financial affairs, health affairs and
wishes, final plans, and significant life events.
Dr. Couch created this
workbook after surviving a nearly fatal blood clot in her lung almost 5 years
ago. Now age 94, Dr. Couch wanted
to make sure her daughters had all the information
they would need to care for her in the future.
According to Dr. Couch,
“Events in anyone’s life can take a sudden turn and catch you unprepared.
It’s vital to create one complete record of the information that is
important to you and those close to you. It
is the most thoughtful gift you can give.”
Since January, Project
Compassion has distributed 3000 copies of the book in 48 states, Canada, and
Great Britain.
According to James Brooks,
Project Compassion’s Executive Director:
“The response has been tremendous.
People from everywhere in the country have ordered the book for
themselves, family members, and friends
and neighbors. Lawyers, financial
planners, retirement communities and faith communities have ordered the book in
bulk for their clients, residents, or members.
With Passing on Thoughtfully,
we now take a whole-life approach to planning ahead.
The workbook has become a powerful tool to help people understand,
communicate, and document not only health care matters, but also legal,
financial, personal, and spiritual matters as well.
It’s a really effective way to get the important conversations and
decision-making going.”
The workbook is now available with a choice of title.
In addition to the original title Passing on Thoughtfully, the
same book can be purchased as Getting It Together… Planning Ahead
End-of-Life
Decision-Making
Dominates the Headlines
The second event that has shaped our community engagement around planning ahead this year was the difficult and painful conflict that surrounded Terri Schiavo.
Although viewpoints were
sharply divided, what became crystal clear is how important it is for each of us
to talk with the important people in our lives about the kind of end of life
care we want for ourselves.
Because we had the resources
and community network in place when the headlines hit, we were ready to respond.
In March, April, and May:
·
150 people attended one of two public forums “It’s
Time We Talk: Conversations about End-of-Life Wishes” offered in partnership with the Duke Institute on Care at the
End of Life.
·
540 people attended Project Compassion programs on advance
care planning offered in 8 faith communities, 2 retirement communities and 2
service organizations.
·
110 people received resources and support by phone or
email.
·
1800 people received a special edition of our e-letter.
·
550 additional copies of Passing On Thoughtfully were
mailed to people all over the US.
Although the media attention has subsided, the impact of
the Terri Schiavo situation will continue for some time. We continue to provide education to help clarify some of the
confusion in the media coverage. We
also continue to offer resources, public programs, and one-on-one follow up.
Contact us if you are arranging a program or seeking more resources on
these matters.
|
Additional
Resources www.caringinfo.org |
Creating Community for Caregivers
by
James L. Brooks, M.Div., Executive Director, Project Compassion
published in the National Hospice and Palliative Care Organization’s
magazine
Insights, March, 2005
Family
caregiving is quickly becoming America’s other profession.
An estimated 44.4 million Americans ages 18 and older provide some level
of unpaid care for another adult.[1]
For many caregivers, the biggest challenge is finding enough time and
energy for a job, a family, the person they are caring for, and for themselves.
As caregiving responsibilities increase, the risk of emotional stress,
physical strain, and financial hardship increases as well.
During
my years as a hospice professional, I encountered many family caregivers who had
been “on duty” for months or years. By
the time the patient was admitted for hospice care, many of the caregivers I met
were physically, emotionally, and spiritually exhausted.
And yet, caregivers with strong informal networks of family and community
support often seemed better prepared to travel the end of life journey.
I
wondered: What if we could find a
way to help patients, families, and community members create informal networks
of care early on, when they first need caregiving support? Could we work with local groups and organizations to create
volunteer caregiving support teams for people as they travel the journey of
diagnoses, treatment options, chronic care and hospice care?
Might patients and families cope better all along the way?
Might we catch a new vision of what it means to work in partnership and
to lead our community in caring for caregivers?
Project
Compassion and the Support Team Initiative
Project
Compassion, the end of life care coalition for the Durham-Chapel Hill area of
North Carolina, has been working to live out this vision of community care for
caregivers for nearly five years. Launched
in 2000 as a free-standing non-profit organization, Project Compassion partners
with area hospices, hospitals, faith communities, retirement communities,
businesses, government agencies, neighborhood groups, and service organizations
to create community and provide support for people dealing with serious illness,
end of life, and grief. Project
Compassion has grown into a grass-roots network of 75 organizations, 315
leadership volunteers and 550 direct service volunteers.
Early
on, our community leaders and volunteers identified caregiving as a critical
community need to address. Taking a cue from hospice on the power of a team
approach and building on resources offered by the Support Team Network, we
launched our Caregiving Support Team Initiative in 2002.
Our
Support Team Initiative is a dynamic network of volunteer caregiving support
teams created in partnership with local and regional groups and organizations. Support teams provide practical, emotional, and spiritual
support for any individual/family that needs assistance with caregiving.
Using a team approach, volunteers pool their talents, creativity, leadership, and time to offer much more support than
one volunteer can provide alone. Support
teams average 6-12 members but vary based on the need.
We provide teams with the resources, coaching, and support they need to
create and sustain the team approach over the long haul.
Since 2002, Project Compassion has helped launch more than 75 volunteer
support teams with 625 volunteers. These
teams have provided over 15,000 hours of volunteer caregiving for more than 250
people in our community. Funding
comes from individual and community donations and by grants. We maximize existing community resources and leverage new,
untapped resources.
In 2003, Last Acts recognized this initiative as one of
three model programs. In 2004, the
National Council on Aging selected this initiative as one of eight Wisdom Works
demonstration programs. Current evaluation
includes a two year study in progress on the effectiveness of the team approach
for volunteer caregiving funded by the Duke Institute for Care at the End of
Life and the University of North Carolina Research Council.
Some
Keys to our Success
By working with partner organizations and volunteer
leaders, we engage our community in new and meaningful ways at the point of
need. Our partner organizations,
volunteer leaders, and volunteer members become ambassadors for creating
caregiving support. As a result, we
are now the hub of a dynamic community caregiving network.
By integrating resources from our Community Education
Initiative and our Advance Care Planning Initiative, we offer important
assistance to individuals and families looking ahead to end of life. As a
result, we help these families understand and anticipate end of life care issues
and choices.
By looking at caregiving beyond the last few weeks or
months of end of life care, we open ourselves to a greater vision of community
care and support. As a result, we
see a widespread community movement for caregiving support emerging.
A Snapshot of the Support Team Initiative
in Action
A 49 year old man in our community was diagnosed with
pancreatic cancer. He lived with his wife and her 6 year old daughter who
has Down's Syndrome. At the time of his diagnosis, he was physically
building a home for his family.
This family had tremendous caregiving needs:
respite care, child care, meals, errands, and help finishing the house.
They also needed emotional and spiritual support.
Project Compassion worked with two faith communities to create a
volunteer support team and facilitate a hospice referral.
Coordinating support, hospice volunteers provided respite care. Support
team volunteers provided support for the daughter with Down’s Syndrome,
transportation, and three meals a week on different nights throughout the man's
illness. The support team helped the family move into a temporary home,
finish building the house, and move into their new home. A week after the family
moved into their dream home, the man died.
The support team continued to provide meals, friendship and support for
his wife and child for months after his death.
The modern hospice movement in America was started by
volunteers who worked in teams to offer a new vision for end of life care.
I believe that the spirit that created the modern hospice movement offers
us new horizons in caregiving today. We
now have the opportunity to offer a vision for creating community and providing
support for caregiving. As more and
more of us become caregivers, I believe it’s time again to energize and help
lead the way.
Creating
Community through Caregiving
by James L. Brooks
published
in the national AARP Connections
magazine
August, 2004
As Executive Director of Project
Compassion in the Durham-Chapel Hill area of NC, I see the power of volunteer
caregiving in action every day. I
remember a year ago when a 63 year old woman with breast cancer first called
us for support. She had been a
“healthy, active, independent woman” all of her life.
However, surgery, chemotherapy, and radiation had changed her life.
She remembers: “I needed help, and I wasn’t accustomed to asking for
it!” Her children provided some
support but they had full-time families and jobs.
She wanted to remain independent and at home.
Then a friend of hers told her about Support Teams.
A Support Team is a group of 6-12 volunteers who provide practical, emotional, and spiritual support for people who need help with caregiving. Support Team volunteers do what they enjoy doing for others when they are able to do it. Team members pool their interests, talents, creativity, and time to coordinate and support their volunteer caregiving efforts.
Partnering with a local faith community, we created a volunteer Support Team for her. Team members drive her to and from chemotherapy, help with errands and meals, visit with her and phone her regularly. When the team learned she loves the water, they created a picnic boat trip on a nearby lake. This Support Team has become her caregiving community. Now she hopes to join a Support Team herself one day!
Last year Project Compassion created 42 Support Teams with 425 volunteers in partnership with 40 local organizations. As a local Faith in Action program, we worked with AARP NC to create a friendly-visiting Support Team for residents of a local assisted living facility who are at greatest risk of isolation.
When individual
volunteers join forces to become a Support Team, they spark dynamic energy,
creativity, and practical solutions to caregiving challenges.
I challenge you to bring a team approach to caregiving to your
community.
By creating caregiving community, you might give someone the support
they need to remain independent and at home.
Volunteer Team
Revives Holistic Aspect of Nursing
By Sandra Jarr RN,
MSN
published in
Nursing Spectrum Magazine
August, 2004
Nurses
know that patients often need simple encouragement and human contact as much as
they need their medical treatments. At University of North Carolina Hospitals,
where I serve as Director of Surgery Service, we’re teaming up with a
community non-profit organization to supplement nurses’ efforts in this area.
A care-giving support team, consisting of community volunteers, visits patients
and assists them and their families however they can; with anything from a
friendly word to running an errand or even cooking a meal.
This program is structured differently from traditional hospital volunteering and has several advantages. It gives volunteers a supportive team environment, encouraging people to participate who would not feel comfortable solo. It shows patients that people in their community care how they are doing. The program supports and encourages our busy nursing staff and reminds them of the importance of connection and compassion. The pilot care-giving support team has worked out so well in our North Carolina Jaycee Burn Center that we are now exploring the possibilities of expanding the program to other areas of the hospital.
The
Little Things Are Big
The
best way to explain the program is to tell you about Edwin George, who we all
call Mr. George. This 53-year-old man has been in our Jaycee Burn Center for a
year, after a welding explosion left him blinded and with burns covering 68
percent of his body.
Mr.
George had been mentioning to his nurses how much he missed eating chili. When
care-giving support team member Virginia Taylor checked in with the charge nurse
one day, the nurse asked her to bring Mr. George some chili. “I went down to
Wendy’s.” Taylor recalls. “When I brought it back, I asked Mr. George,
‘Do you eat chili a lot?’ He said, ‘I haven’t had chili for a
year.’”
For
Mr. George, the fast-food chili was a taste from his life before his injury and
a great encouragement. When somebody asked him about that cup of chili days
later, Mr. George said, “Oh yes,” stretching the word almost into a purr.
“Boy was it good!”
In fact, all of the half-dozen members of the care-giving support team have gotten to know Mr. George. Each has spent time showing him kindness. One rubs cream on his healing skin. Another day, one scratches his head, which distracts him from pain and itching elsewhere on his body. Another volunteer even participated in his physical therapy by helping him to move his arm through exercises under the direction of a therapist. “It was one of the most satisfying experiences I have ever had.” said Dorie Keiser, a retired New York University staffer who volunteers with the team. “He worked with me.”
Passion
for Compassion
I
worked with the local non-profit Project Compassion to form this team – on
which I am proud to serve. I got involved with the organization at its founding
in 2000 when my hospital’s chief operating officer recruited me to serve as
the hospital liaison. Now I serve on its board of directors and as its
treasurer.
Project
Compassion offers leadership, training, consultation and support to
community-based teams who care for patients and families facing serious illness
or death. These “care-giving support teams” are its largest initiative, and
in 2003, provided 145 people with 6,400 hours of volunteer service.
Project
Compassion also educates the community about dealing with grief, illness and
death and encourages people to formulate advance health care directives. It does
all of this good work on a budget of just more than $100,000 per year.
“Patients
should have a clear, creative way for their neighbors and people in their faith
communities to be involved in their care,” James Brooks, Project
Compassion’s Executive Director, says of the care-giving support teams.
“People often say they want to help, but they don’t know how to. This
provides a way to give that support without the individual or the family always
asking. The team really works with the individual to see what the needs of the
family are.”
Teams
of six to 12 volunteers can be formed through religious congregations,
retirement communities, health care institutions, or through a network of
friends. They can serve one particular family or be a standing team that works
regularly with any family. The team leader stays in close contact with the
patient, discerning needs and asking members of the team to meet them.
Non-hospital teams might pick up medicine, drive a patient to a doctor appointment, visit the patient and family, or simply call to ask how they are doing. “It multiplies the kind of care that happens.” Brooks says.
Support
Reaches Everyone
To
form our hospital team, I placed an ad in the hospital newsletter asking for
volunteers. Staff members from other parts of the hospital and community
volunteers received training from both the hospital and Project Compassion
before going to work.
Virginia
Taylor, who fetched Mr. George’s chili, also happens to be Project
Compassion’s Care-giving Support Team Director. She is so excited by the
concept of hospital-based support teams that she volunteers on our Jaycee Burn
Center team. Other volunteers are hospital staffers in other departments or
members of the local community.
Team
members spend a few hours each week working with patients in the Jaycee Burn
Center who need them. And we all meet together for one hour a month to discuss
our experiences and support each other. “I thought, a team, gee, that’s
ideal.” says Keiser, who had already been volunteering in the Jaycee Burn
Center. “Then we can share as a group what we’ve done and help each other.
When I worked up here alone, and I was the only volunteer for a while, I was
fairly isolated.”
The
meetings also give team members a forum for dealing with our emotions about the
patients we encounter. And it is a place where everyone can share the deep sense
of fulfillment the work provides.
“I
cried because I had wrinkles until I met a man who had no face,” volunteer
Patt Dower told all of us at a recent team meeting. “He was so newly injured,
and it was clear that he wanted my company. But he had a trach tube. So I just
put my hand on his arm, and we looked at each other. It seemed like an eternity.
I bet it was 10 minutes of just human contact and acknowledgement.”
Patients,
especially burn victims who have been disfigured, are often worried about
whether strangers will accept them. It must be so reassuring when someone from
the community chooses to visit and sees a person rather than the injury.
I will survey the nursing staff at intervals to get
feedback about the initiative. The first data are not yet in, but I am
encouraged by comments from members of the staff.
“It is an extension of us, someone with a fresh perspective on what we
do well,” says Fred Price, RN, Jaycee Burn Center Nurse Manager. “Our
priorities are giving the meds, assessing the patient, doing the paperwork. The
five minutes of sitting and talking and rubbing and touching – the holistic
part of nursing – can get missed. This program is a true spiritual extension
that can provide some of those things.”
Karen Klish, RN, Assistant Nurse Manager, adds that watching the volunteers renews her
enthusiasm for her work. “I’m listening to them and thinking, just to touch
somebody that you’re not doing something to is so important,” she said.
Mr.
George agrees. His family lives more than 80 miles away. Relatives have to work
during the week and can’t visit as often as he would like. Visits from the
care-giving support team mean a great deal. He has come to recognize each voice.
“I have somebody to talk to,” he says. “They read the sports page to me
and tell me what’s going on. My head itches a lot. They’ll scratch it a lot
and it feels good.”
As
a recent support team meeting wrapped up, all of us stepped into the hallway and
saw something that amazed and pleased us: Mr. George, walking with a little bit
of assistance.
Race
for Remembrance:
Race
Provides Lessons in Loving and Living
by Valarie
Schwartz, Staff Writer, The Chapel Hill News
Published June 11, 2003, Page C3, www.chapelhillnews.com
 |
While Mary Sullivan prepared to run in the Rock 'n' Roll Marathon -- which she dubbed "Race for Remembrance" --she believed she would be carrying the names of people who had died in her heart. She had no idea that the stories of the people she had learned of, whose names were on her shirt, would carry HER through the 26.2-mile race through San Diego, Calif, on June 1. |
In January, Sullivan went with a friend to a Teams in Training meeting for the
Leukemia-Lymphoma Society. She had
always wanted to run a marathon and decided to run in the Rock 'n' Roll Marathon
after soliciting donations for Project Compassion, the nonprofit agency she
founded shortly after a long-time friend died from breast cancer.
A key element of Project Compassion is providing community support when a loved
one is terminally ill or has died. Sullivan
sent out letters stating that she would wear a shirt bearing the name of her
late friend Rhonda Wise Holman, along with names of family, friends or community
members submitted to her. The
journey began for her as the letters started coming back.
"Some of us are really yearning to tell our story," said
Sullivan, 40. Along with the $6,000 that came in were stories of lives cut short
or lived long and the people who continue to love those who are gone.
"Someone
sent $56 because their friend would have turned 56 in August," Sullivan
said. Sullivan mentioned others -- the sister of a young woman who died from an
eating disorder, the woman whose father-in-law told her before he died how
grateful he was that she made his son's life so happy, the woman who thanked her
for the invitation to memorialize her mother eight years after her death.
"Great poetry and stories have come in," she said. "Some
people sent in pages about their loved one." Sullivan hopes to be able to
include the messages on the Project Compassion Web page.
Sullivan
included the names -- more than 90 of them -- on the front of the shirt she wore
during the race with the Project Compassion logo and mission on the back.
Once the race began, it seemed to Sullivan as if the collective spirits
of those named took over. "It was really inspiring to me to have
these stories and names of people inside me," Sullivan said. "They
carried me."
Every
element of the race became a metaphor, she said. When Sullivan's legs began to feel like lead, she thought of
how difficult it had become for some of those named on her shirt to get around.
"Whatever I was feeling at the moment was nothing compared to what
these people had been through," she said, "and mine was by
choice."
Sullivan didn't train alone or go to the race alone -- her running partner,
Malcolm Marler from Birmingham, Ala., was a part of the whole process. Most of
their training was apart from each other, but having joint goals to accomplish
kept each out and running.
In San Diego, there were 20,000 runners. Because it was the Rock 'n' Roll
Marathon, there were 42 bands playing music along the course of the race.
"There was such great support and community all along the course,
with people cheering you on," Sullivan said. "It was like music
therapy -- at mile 20, I wanted to dance. "
But during the last eight miles of the race, Marler was slowed down
considerably by an injury. "I went through four miles of internal
anguish," Sullivan said. She wanted to run ahead, but didn't want to leave
Marler behind. Sullivan realized it
was the same experience as for the caregiver of someone who is terminally ill,
wondering if they should go ahead and have their needs met or stay by the loved
one's side. Sullivan dealt with it
by running ahead, then doubling back to check on Marler, then running ahead
again -- much as a caregiver has to work twice to keep things going.
"At mile 24 I asked if it would be OK if I just let it rip?" Sullivan
said. It was what Marler wanted for her as well.
She
sprinted the last two miles with a rush of adrenaline screaming through her.
”It was so exciting," she said. Then,
she worked her way back to Marler again. "He got a burst of energy when he saw the finish
line," she said, and they crossed the line together. "It was
emotional," she said. "I never had one minute of pain."
Sullivan said that she ran one mini-marathon 20 years ago and has run off and on
through her adult life, but in no way considers herself a jock.
"I felt that at any moment the springs were going to start popping
off!" she said, laughing. "The 26.2 miles was easier than any of the
long-training runs because of the support around me."
She
learned a lot about support during her friend's illness. Sullivan and
Rhonda Holman became friends in 1990 while living in Northern California. "We
found out we were pregnant with our first children within a few weeks of each
other and gave birth within a few weeks of each other," Sullivan said.
"We had a really close friendship." It still brings tears to her eyes
to remember the words that first alerted her that her friend had a problem.
"She said, 'I think I have a blocked milk duct.'" Toward the end
of Holman's second pregnancy, they induced the birth when it was safe and did a
biopsy. "Her youngest child was a few weeks old when she was
diagnosed with breast cancer," Sullivan said.
The journey from diagnosis to death lasted five years. As Sullivan tells it, the
last 40 days were ones of accepting the imminence of her death.
"Rhonda was in a lot of pain, and she had lost functioning. She
couldn't move out of bed, but she was able to communicate until she took her
last breath. On the day she died, she told her dad, 'Today is the day I'm going
to die. We need to figure out how to tell the kids.'"
And the day was spent with that effort and calling people, saying good-bye. Her
two children were on her bed in a room where she had been moved that had a
spectacular view of a mountain range beyond.
Holman's sister-in-law was crying. "She said, 'Don't cry, it's
really not that bad,'" Sullivan said. "Then she died. It was surreal
that last week. She was so childlike in her ability to express her love. She was
very clear. It was a wonderful gift to be a part of her journey."
Her friend's journey led Sullivan to one of her own as she founded Project
Compassion where care teams help families through such journeys of their own.
"The challenge is to hold faith and hope in one hand and to hold
onto acceptance that we're all going to die," Sullivan said. "There's
a lot of encouragement to keep trying one more thing. How do we know when it's
time to say, no thank you?"