NEWPORT BEACH -- Karen Twichell knows grievously well that caregivers
need their own caregivers.
After losing her mother to pancreatic cancer, her father to lung
cancer and her brother to a brain tumor, Twichell realized that people
giving care can need, sometimes, as much or more encouragement to bear
the pain of watching loved ones suffer as those suffering need.
Though Twichell had lost both her parents and brother by the
mid-1990s, she continues to care for family members today. Her older
sister was diagnosed with breast cancer two days before her husband found
out he had prostate cancer six years ago.
While facing her own struggles and mourning, Twichell also learned
that more than a million Americans share her plight every year.
"I realized there's not too much help out there for a caregiver," said
the author of "A Caregiver's Journey," published last year. "My goal
really was to help them to recognize that they have a lot of the same
fears and concerns, and to let them know they're not alone."
Twichell, who gives talks at Hoag Hospital for various support groups,
said she wanted her book to do more than give instructions on pushing a
wheelchair or transferring a patient to the bed. Leaders of
Newport-Mesa's support groups for caregivers agree that there are deeper
needs to consider.
"It's very difficult to vent with relatives, spouses and friends if
they don't know what it's like to go through it," said La Rhea Steindler,
leader of a care-giving group for people taking care of relatives that
operates through the Jewish Family Center. "It's very helpful for these
caregivers to come and express their feelings to a group that's in the
Some concerns appear universal, experts say.
Twichell's book, which was endorsed by author Jack Canfield of
"Chicken Soup for the Soul" fame, weaves personal stories of struggles
with practical tips on care-giving. The chapters are titled so readers
can flip immediately to the department they need -- "hearing the news,"
"spiritual issues," "moving on," for example.
Twichell would advise any caregiver the following three tips:
* 1: You can't take care of others without taking care of yourself.
"When I do my talks, I tell them it's kind of like when a flight
attendant tells you to put on your own oxygen mask first," Twichell said.
* 2: Listen to the patient.
"By listening to the way the patient is reacting, it gives you a hint
as to how they're going to handle the situation," she said.
* 3: Get help from others.
Nancy Raymon, director of program development at Hoag Hospital's
Cancer Center, agreed with all of Twichell's tips but stressed that
asking for help is important.
"Many caregivers are kind of caught up in the routine of doing
everything themselves," she said. "They find it difficult to ask for
Kris Okamoto, a neuroscience nurse at Hoag Hospital who works with
brain tumor patients, added to the list of tips in a more administrative
"Keep a folder with documentation of all the medical records," she
said. "It's a complicated disease process and some medications change
And make sure you fill out the legal paperwork to establish who's
responsible for the decision-making in case the patient ever becomes
unable to, she added.
Take notes when you visit the doctor's office.
Okamoto's care-giving group for patients of brain tumors is open to
"This is not just a therapy group," Okamoto said. "It's a group where
people come to get information."
Group leaders have found that this process helps not only the
receivers, but the givers.
"That's kind of a healing process in itself," Steindler said. "It's
empowering to give back to a group."
Hoag Hospital offers support groups on designated days and weeks for
patients and caregivers of brain cancer, prostate cancer and lung cancer,
as well as a group for general cancer.
Steindler's group, which meets at the Jewish Federation Campus twice a
month, is open to patients and caregivers of any illness. Call (714)
For information on caregiver groups at Hoag Hospital, call (949)