At peace with dying

By Tanya Bricking Leach
Advertiser Staff Writer

Bernice Caine, a former nurse, read the cards when doctors told her she had a malignant tumor. She refused surgery, but she accepted the idea of death. Hospice care has been a bright spot in her life, and she wants to tell people about it before she goes. Deborah Booker • The Honolulu Advertiser Find out more Hawai'i has seven hospice organizations. Hospice Hawaii (924-9255), one of two on O'ahu, celebrates its 25th anniversary July 21. O'ahu's other hospice, St. Francis Hospice (595-7566), turned 25 last year.

Mention something happening next month, such as the 25th anniversary of the hospice where she lives, and she'll tell you she can't make it to the celebration. She has other plans, and her plans are otherworldly.

She's dying, but the idea of death doesn't frighten her. She never dreamed of being this old, anyway.

"I'm just an ordinary old woman, going on 95, trying to get off the planet," she said.

Before she goes, she's working on unfinished business, including getting the word out that if you have to endure a drawn-out death, a hospice is a comfortable place to do it.

As the baby-boom generation deals with dying parents and its own mortality, it's a message that people are eager to hear. The idea of dying in a homelike setting is so much more appealing than dying in the high-priced isolation of a hospital.

Friends have been inspired by Caine, once a tall and slender beauty who ran a dress shop on the island and was a Stanford University grad and wartime nurse.

She's seen a lot of grief in her life. By the time she was 27, her mother had died of what doctors said was asthma, and shortly thereafter, her husband and father were drowned in a fishing accident. Caine never remarried or had children. Her only sister died at 35. But Caine didn't let herself become absorbed by grief. She converted to the Baha'i faith in 1948, traveled the world with the church, and has believed for a long time that death is something to look forward to because each person shares a common destiny in the next life.

That idea really sank in last August when she went to the hospital because she wasn't feeling well. Doctors discovered a malignant tumor and told her she had a terminal illness. She refused surgery and went from a hospital to a care home to the hospice.

"She said to me once, 'Annie, why am I still alive? This is ridiculous. I want to go home," said her friend, Annie Marten, a fellow Baha'i and retired nurse. "I think what other people could learn from her is that hospice is a bridge from the physical to the spiritual, and that's what she represents. She is trying to tell the world here's a place that you can go that you will be cared for in every area of your life."

About half of hospice patients accept death with such a positive attitude, said Diana Bassen, a nurse who helps care for her. "Maybe having faith makes a difference in being ready."

In her room at the Hospice Hawaii house in Kailua, Caine is confined to a bed and a chair. But she can sit and write letters, read her books, watch television, admire her cat decorations or look out the picture window to the pool, where she watches the ducks every day.

Hospice organizers asked if she wanted to be in a video marking Hospice Hawaii's 25th anniversary, but she said she wouldn't be here for the anniversary. Instead she wrote a letter saying how grateful she was to be there.

The facility is one of seven hospice centers in the Islands. They started around the same time, and hospices across the country are experiencing record demand. Numbers of hospice patients have soared from 154,000 in 1984, when Medicare created a hospice benefit, to 855,000 last year, the National Hospice and Palliative Care Organization estimates.

There's still spunk left in the old woman occupying the last bedroom on the left at the Kailua house, a woman who drove her own car until she was 92 and has had a lifelong interest in science.

If there's anything people can learn from her, she wants it to be that death is nothing to fear.

"It's like I'm going on a long trip and I don't know what I'm going to see," she said. "If it comes tomorrow, great. And be happy for me if you hear about it."

Reach Tanya Bricking Leach at tbricking@honoluluadvertiser.com or 525-8026.

Caine's letter

Bernice Caine is 94 and lives in a Hospice Hawaii home in Kailua. This is an excerpt from her letter about what it's like to live in a hospice:

For the last few months I have been living in a charming, five-bedroom hospice home, a facility created for people who have been medically diagnosed as terminally ill and need skilled nursing care. I am one of the patients and this is now my home until I pass on to the next plane of existence, or as I like to call it, the real or spiritual world.

Life in a hospice home or house is known for its home-style atmosphere, unlike a hospital, nursing home or other care facilities — even one's own home where relatives and friends are unable to care physically or emotionally with they dying.

As a patient, I'd like to share information for those who do not like to talk about "death and dying." Facing death is really not a problem if one's beliefs are in God and a life after death. Dying is more complicated. It is the "how and I going to die?" and "when am I going to die?" ... two questions, and only God has the answers.

The personnel of the hospice facility, at least where I am, always, without hesitancy, accept my ups and downs, my likes and dislikes, without being patronizing or condescending. It takes patience, understanding and compassion to work where all patients are dying and pain medication does not always fill the need.

I am most grateful to be in this type of venue where it is obvious all help, staff and volunteers like their jobs or they wouldn't be here, where it takes more than giving a bath and a backrub. The family atmosphere, the empathy between the patient and caregivers is "what it is all about."

I'm always happy to see a volunteer who gives time to lend a helping had and doing menial jobs — water your flowers, fill water pitchers, take in or out a tray, etc. Sometimes just a pat on the arm and a friendly smile suffice. There have also been University of Hawai'i students who have volunteered and gained knowledge for their classes in Family Resources — Death and Dying.

I truly believe that only a patient in a bed in a terminal home can give a realistic picture of what it is like "waiting to pass over," as I said earlier, to the spiritual world. I have learned a lot from them (caregivers), and I hope they have gleaned a little from my 94 years of living — nearly one whole century of learning.

Now that our population is growing by leaps and bounds and people are living longer, I'm convinced that there is a great need for hospice care and it should be made available and affordable for the terminally ill.

I have only one hospice home to relate to, so I cannot judge others; however, I am confident I have made the right choice.

I thank God every day for this beautiful hospice home I now live in. The large, attractive reception room where relatives and friends of the dying can rest and relax; the well-equipped, comfortable patients' rooms; and most of all, the nursing caregivers, volunteers and staff who treat us physically and emotionally with respect, love and compassion — the way every human being deserves.