Caring for the caregivers

Young Chang

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

same division."

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

their caregivers.

"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)


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