A journey filled with love - BJC HealthCare

A large collage hangs in the Ebeler family
home. In the center is a photo of the firstborn
Ebeler child, Rebecka, who lost her battle
with cystic fibrosis (CF) at the age of 12.
Surrounding the photo are words describing
Rebecka, a daughter and sister who is loved
and missed — a child who, after a lung
transplant, cleverly composed “An Ode to
My Dear Old Lungs.”
“I said adios to my dear old lungs,” she
wrote in a seemingly lighthearted way.
Rebecka’s siblings made the collage as a
tribute to their sister.
An outlet for intense emotions
Young people with serious and life-limiting
illness in the BJC pediatric hospice and
supportive care program, Wings, have
experienced an intense set of emotions in
their short life – as have their siblings.
Hope, fear of the unknown, grief, changes in
lifestyle and abilities, and intensified love of
family mount to unusual heights.
Expressive therapy, offered by Wings through
Janet Tellatin, MSW, CET, can provide an
outlet for young patients, and their siblings,
for identifying, examining and sharing these
feelings.
What is expressive therapy?
Expressive therapy includes all forms of
artistic expression: paintings, drawings,
Because each day is a gift SM
News from BJC Hospice Summer 2008
A journey filled with love
Expressive therapy releases hopes and fears
clay creations, collages or mask creation;
stories written and illustrated by the child;
photography, especially that done as a
documentary; and sand tray therapy. It also
includes play and movement activities.
“Any of these mediums can help children
safely express what they can’t say in
words, with the use of symbols, objects or
metaphors,” Tellatin says. “I might engage a
child in drawing a dream, manipulating a set
of figures in a sand tray, writing a short story
or poem, or using music as an inspiration for
a painting.
“These forms of self-expression can lead to
greater self-understanding and release of
painful or troubled feelings,” she says. “It’s a
way to alleviate thoughts on change and fear
of the unknown.”
Tellatin recalls a young girl, coping with her
sister’s recent death, who had been unwilling
to talk about her feelings. When presented
with sand and various objects, though, the
girl created an elaborate world of people,
animals and other objects that illustrated her
sister’s death and funeral. She then began to
talk about the world she had created and her
feelings of sadness and longing.
“Sand tray play therapy engages a child in a
world beyond language,” Tellatin says.
Expressive therapy can be an outlet for
releasing the emotions associated with the
loss of a sibling, the acceptance of illness,

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Because each day is a gift
Expressive therapy
continued from page 1
thoughts about afterlife and the stress of
change to one’s daily life. The activities
help to express the fear of the unknown for
oneself and for loved ones.
Expressive therapy may also help to celebrate
a strong family love, such as the love in the
Ebeler household.
Documenting a journey
Each member of the Ebeler family has his
or her own feelings to sort through. Rachel,
14, also has CF. While adjusting to her own
illness, Rachel still deals with the loss of
her sister. Sometimes her expressive activity
is art about Rebecka, such as her painting
of Rebecka as a beautiful angel — the way
Rebecka looked in a dream Rachel had.
Other creations, such as “Rachel’s Story,”
describe her feelings about her own journey
through CF. “Creating this art and these
stories has helped me let out my feelings,
deal with my illness and continue to fight
and hope,” Rachel says.
Her paintings are intense with quiet
expressions of struggle, determination and
love, Tellatin says. “Art expression offers a
tangible and lasting product that is shared
with the family,” Tellatin says.
With Tellatin’s help, Rachel is putting
together a book. She is incorporating her
art and writings into one manuscript that
tells the story of her journey with CF. She
describes it as “a journey filled with sadness,
scariness, grief and triumph, but most
importantly, filled with love.”
BJC Palliative Home Care
Only one of its kind in the St. Louis area
BJC Palliative Home Care is a specialized home
health program that caters to the needs of
patients with any advanced stage disease. This
program is the only one of its kind in the greater
St. Louis metropolitan area.
“Ninety-five percent of the patients are those
with advanced stage cancer who are just not
ready to be in hospice,” says Lynn Anson, BJC
Palliative Home care manager. “Our staff brings
a wide variety of training to this program.
We have ICU nurses, oncology nurses, charge
nurses from nursing homes and hospice nurses.
Each one of them is specifically trained in pain
and symptom management and have great
knowledge of the side effects of chemotherapy
and radiation. Our job is to meet the patient
where they are at, define the goals and if,
appropriate make a seamless transition to
hospice.”
“I had a spouse of one of our patients call me
recently,” says Anson. “She raved about our
services and said our nurses are so kind and
caring. They never seem like they are rushed and
they always took their time and listened to what
my husband needed.”
Currently, BJC Palliative Home Care sees about
135 patients all within a 50 mile radius in the
St. Louis area. Since BJC Palliative Home Care
is a home health care program, patients have to
be home bound, have to have a skilled need and
they have to have a doctor’s orders.
Below are drawings from Rachel’s “journey filled with
sadness... and love.”

BJC Hospice will begin seeing patients in
the Farmington and surrounding areas in
the next month, and is currently hiring
individuals and seeking volunteers from the
area. They will be located at 757 Weber
Road in Farmington.
BJC Hospice brings 25 years of experience
and compassion to the Parkland area with
a new menu of services such as massage
therapy for the patient and
caregivers, music therapy,
free support groups
and retreats for ages 6
through adult, extended
bereavement programs for
children and adults and
more.
“In coming to the Parkland
area we will be able to
provide continuity of care
within the BJC HealthCare
system and the community
at large with local staff,
familiar with the needs of
patients and families within
their communities,” says
Barbara Westland, director.
Parkland Health Center,
BJC Behavioral Health
and BJC Home Care
Services are also a part of
BJC HealthCare. BJC Home Care Services
operates from Farmington and sees patients
within a 50-mile radius. BJC Hospice is nonprofit,
and services will be offered based on
need rather than the ability to pay.
BJC Hospice is currently hiring a hospice
supervisor with previous hospice experience,
staff nurses and a massage therapist.
Volunteers may help in the office or provide
relief for caregivers in the home by visiting
patients. Training is provided.
Hospice care is a concept of health care that
provides for the physical, emotional and
spiritual needs of terminally ill patients and
their families. It is for people confronting a
fatal illness, for whom curing the disease is
no longer a realistic goal.
Hospice provides services needed to manage
the patient’s symptoms and complications. It
can be provided to people facing a variety of
diseases such as cancer, endstage
heart or lung disease,
dementia, ALS, Alzheimer’s,
AIDS, renal disease and other
chronic illnesses.
By providing pain and
symptom management, as well
as emotional and spiritual
support for the individual and
family, hospice helps people
to live as fully as possible, in
comfort and dignity. Although
most hospice services are
delivered in a private residence,
some patients live in nursing
homes, assisted living facilities
or senior living complexes.
The staff of BJC Hospice
will include registered nurses
expert in pain and symptom
management; certified home
health aides; medical social
workers to connect the family with resources
in the community; physical, speech and
occupational therapists; volunteers and a
medical director.
If you are interested in working for BJC
Hospice, please call 314-953-1831. If you’d
like to volunteer, please call Eileen Spinner
at 314-953-1762 or e-mail her at etr7873@
bjc.org. Visit www.bjchospice.org for more
information.
BJC Hospice 3
BJC Hospice coming to the Farmington area

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Because each day is a gift
A volunteer
at the heart
of
BJC Hospice
The graciousness of those facing the end of
their lives is what inspired Colleen “Coke”
Hennessy to become a volunteer for BJC
Hospice.
Hennessy (formerly Nemanick) had spent 36
years as an estate planning attorney working
to help clients, many who were terminally
ill, set their affairs in order. She retired four
years ago from the firm of Lewis Rich &
Fingersh. She found her law practice to be
a perfect stepping stone for becoming a
volunteer with BJC Hospice.
“It was such a privilege that people would
allow me into their lives,” Hennessy says.
“The great thing about being a volunteer
with Hospice is that my talents are well
utilized. I have never done work with an
organization that is so prepared to work
creatively with their volunteers.”
Hennessy’s first challenge when she arrived
was to use her knowledge to create a legal
guidelines book for hospice patients and
their families. The finished product contained
information a family would need to know
if someone died, such as passwords for
computers, where to find documents and
asset information such as stock certificates
and bonds, the name of HR contacts at the
patient’s place of employment, information
on veterans’ benefits and where to locate
bank accounts and life insurance policies.
Colleen “Coke” Hennessy
“It became a sort of a checklist,” Hennesy
says. “It is so much easier for a family to
gather this information while their loved one
is still with them, and it gives the patient a
sense of accomplishment that they are taking
care of their family.”
Hennessy taught BJC Hospice social workers
about the book’s use, and eventually even
expanded the offering to the Greater St.
Louis Hospice Organization and taught
members how to use the piece.
Hennessy has donated other talents over the
years, such as making memory teddy bears
for families from a clothing item of their
deceased family members, making quilts,
even stuffing patient packets.
She also enjoys visiting patients, and one
special person still brings tears to her eyes as
she remembers her. Dorothy was in and out
of care within BJC Hospice over two and a
half years, during which time Hennessy came
to know her and consider her a friend.
“Dorothy had dementia, which a good
percentage of hospice patients have, and it
was really a fascinating experience to see

what I could do to unlock a door in her
mind,” Hennessy says. “The Alzheimer’s
Association says that the key to connecting
with an Alzheimer’s patients is activities. And
that certainly proved to be the case with my
patient. I would try something new three
times to see if she picked up on it.”
For example, Hennessy gathered pictures
from Dorothy’s family, photocopied them
and arranged them by subject in a binder
to spark discussions. She brought in
watercolors and the two made greeting cards
for Dorothy’s family.
“Dorothy taught herself how to paint in her
70s,” Hennessy explains. “She remembered
once that her son liked race cars, so I drew
one for his birthday that she filled in with
paint. But she improved my one-dimensional
drawing by adding a third and fourth wheel
to put it in perspective.”
Typing several of Dorothy’s favorite poems
in large type inspired the former English
teacher to recite The Raven by memory, but
other experiments, such as working with
beads to make jewelry, failed to connect with
her.
“Dorothy was awesome,” Hennessy says.
“She taught me that we never lose our
usefulness in this world. Cognitively she was
not making a contribution, but she was so
cheerful and so well loved she was making
a very big difference in many people’s lives.
That’s something I didn’t know before.”
Hennessy has continued to find a special
connection with Alzheimer’s patients within
BJC Hospice, and teaches other volunteers
her techniques.
For her many contributions over the years to
bettering BJC Hospice for patients and their
families, Coke Hennessy has been nominated
for the Missouri Hospice and Palliative Care
Association’s Heart of Hospice award.
Patient Support
Volunteers needed
BJC Hospice is looking for individuals
who would share some time and
energy with those in need by
becoming a patient support volunteer.
A patient support volunteer might
run errands, babysit, visit or help
with housework or cooking. Office
support volunteers are also needed.
This job might require data entry,
photo copying, filing, sending faxes,
assisting with mailings or assembling
packets. Hospice patients are children
and adults of all ages. Volunteers,
both teen and adult, are needed
throughout the St. Louis metropolitan
area; Parkand, MO; Sullivan, MO; and
Alton, IL. To find out more information,
please call one of the following:
St. Louis: 314-953-1762
Parkland: 573-760-8550
Sullivan: 573-468-3630
Alton: 618-463-7100
BJC Hospice
5

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King, a German Shephard, is a great listener and
will give and get as much attention as a patient
needs and wants. That’s the theory behind a new
service at BJC Hospice in Alton – pet therapy–
where King and his owner, Bob Schwarz, visit
with BJC Hospice patients in nursing homes or
private homes.
Three-year-old King is trained through Therapy
Dogs International, a part of the International
Therapy Association. For the past two years,
Schwarz has been participating in pet therapy.
He became interested in volunteering his pet
therapy services to hospice patients while
bringing King to see his aunt during her nursing
home and hospital stays. When Schwarz’ aunt
was diagnosed as unresponsive in the hospital,
she surprisingly asked for King when she heard
Schwarz’ voice. When Schwarz told his aunt that
King was there, she put on her glasses, reached
out and petted King, then went back to sleep.
Schwarz and King started BJC Hospice at Alton’s
new pet therapy program in August 2007. King
is trained to be patient and mild mannered. His
“job” is to listen and allow himself to be petted
and cooed over.
BJC Hospice Because each day is a gift
The ‘tail’ of a
patient advocate
called King
He can beguile you with his
eyes and you can’t help but
sweet talk him.
Sarah Warren, BJC Hospice at Alton office
and volunteer coordinator, has noticed that,
even though King’s job isn’t a paid one, he is
richly compensated with plenty of attention.
“He is very well-behaved, showing control and
patience.,” Warren says. “That’s essential to
hospice patients, knowing that they wouldn’t
tolerate a dog that jumps or barks easily.
Calmness is important.”
All of the hospice patients at BJC Hospice at
Alton are now offered pet therapy. It becomes a
joint decision between BJC staff and the patient
and family if pet therapy is elected. King mostly
visits nursing homes. If he goes into a private
home, other pets must be secluded during King’s
visit.
“We learned about pet therapy at an SIUE
workshop and were so excited to be able to start
the program at our hospice branch,” Warren
says.
“King sure brings a lot of
smiles to the patients’ and
family members’ faces. He’s
doing his job well.”

Magellan Health
Services raises
$31,000 for Wings
Two annual events organized by Magellan
Health Services raised over $31,000 for the BJC
Hospice pediatric program, Wings. On Saturday,
February 23, 2008, Magellan Health Services
held its 6th Annual Trivia Night benefitting
Wings. Over 700 people attended the event
and the evening included beverages, food, fun,
a silent auction, and raffles. Last Fall, the
ninth annual golf tournament took place at the
Landings in Chesterfield, in which 144 golfers
participated, which was a sold-out crowd.
Magellan Health Services is the country’s leading
diversified specialty health care management
organization. Our vision is to use our health care
management expertise to improve health care
outcomes for individuals and their families.
The Wings program is a
specialty pediatric program
for infants through 21 years
of age with life-limiting
illnesses. This program
allows the terminally
ill child to live
comfortably at
home among
family and
friends.
The money raised will go toward bereavement
efforts for the Wings families, Stepping Stones
Camp, and Labyrinth, a grief retreat for teens.
“Programs such as the trivia night and charity
golf tournament focus philanthropy on worthy
community programs,” says Linda Marshall,
Magellan Health Services. “We chose the BJC
Hospice pediatric program, Wings, because it
provides extraordinary family-centered care for
terminally ill children and their families.
“The Magellan employees have been wonderful.
They encourage their co-workers, family and
friends to support them in all of their efforts
to raise money for the Wings program,” says
Barbara Westland, BJC Hospice director.
“They are doing such a great job and we truly
appreciate their hard work.”
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Because each day is a gift
Non-Profit Org.
U.S. Postage
PAID
St. Louis, MO
Permit No. 2705
BJC Hospice offers free grief
programs to the community
Stepping Stones
A weekend camp for children ages 6-12 who have lost a family member
to illness or accident or illness will be held August 15-17 at Camp
Wyman in Eureka, MO. There is no cost to participating children.
Professional staff will offer children opportunities to safely express
their feelings and identify with peers. Group sessions focusing on
bereavement issues and the grieving process will be provided.
Trained volunteers will provide our campers with opportunities
to explore the outdoors and participate in craft, music and drama
activities.
Weavings
A weekend retreat for women who have experienced the death of a
child aged 21 or younger will be held September 28-30 at the Mercy
Center in St. Louis, MO. Professional grief counselors and volunteers
from BJC Hospice will encourage sharing, healing and lead activities
of celebration and remembrance for each child. There is no cost to
participants.
For information about any of these grief retreats, please call
314-953-1776.
BJC Hospice
E-mail mbs1023@bjc.org
if you would like to change
mailing information
BJCSM Hospice
9890 Clayton Road, Suite 200
St. Louis, MO 63124