THE JOURNEY TOWARDS DEATH - Tucson Local Media: Import

THE JOURNEY TOWARDS DEATH

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Posted: Wednesday, July 17, 2002 11:00 pm | Updated: 7:46 am, Thu Mar 24, 2011.

Amanda*, 34, seems out of place among the mostly elderly patients being cared for by the Casa de la Luz Hospice.

It is the journey toward death they all share that has brought them so much closer. Amanda's cancer is terminal. She wasn't expected to live more than a few days when she was placed in hospice care in May, but she continues to hang on, driven by the desire to spend as much time as she has left being a mother to her four children, ages five to 13, and a wife to her husband.

"It's very hard on her," said Lynette Jaramillo, Casa de la Luz executive director. "Everyone else is 70 or more and she's in her 30s. So, depending on how she feels she may join the others for dinner or she may sit out in the family room with them, but mostly what she does, she gathers her strength," Jaramillo said.

"She gets lots of tender loving care, so she can go home on the weekend and be mom, even if that means just lying in bed and listening to her children playing in the family's apartment or doing what they have to do," Jaramillo said.

You don't see her out visiting in the other rooms very often, but she knows what she and her elders have in common, that they're all going through the same journey together, Jaramillo said.

Before her arrival at the hospice, Amanda lived in an assisted living center. One of the nurses who was treating her at the center came to Jaramillo and asked if Amanda, whose mother also died of cancer, could be brought to the hospice even though neither Amanda nor her husband could afford hospice care. The cost is being paid by the Casa de la Luz Foundation.

"It was just too sad to see a young woman dying in a skilled nursing center," Jaramillo said of Amanda, who had been receiving aggressive treatment for her cancer for several years until it was decided earlier this year that nothing more could be done.

Because Amanda's needs are being met in that her fears, pain and anxiety are dealt with, she's doing well at the hospice, Jaramillo said. "It's not going to change her prognosis, but it is going to make her life much more enjoyable." she said.

"Every day now is a gift for her," Jaramillo said. "She wanted to see her daughter's 13th birthday and that's passed and they continue to collect memories for their children.

"She has a strong will to live and see her children grow up, yet she knows and has come to grips in the last 60 to 90 days with the realization that this probably isn't going to happen. So she's doing everything she can to enjoy the time she has left with them," Jaramillo said.

The family is among the working poor and the hospice is probably the nicest home Amanda has ever lived in. The father's work and care of the children occupy so much of his time that it's hard for him to visit his wife in hospice, making the weekends his wife can come home so much more precious.

Louise*, 83, another patient, came under hospice care eight months ago. At the time, health officials were uncertain whether she'd last two days or two months because of her cardiac problems.

The day of a reporter's visit was not one of her better days. She was groggy from medication and could not remember the sequence of events that brought her first from a California town where she was living alone in an apartment to Tucson where she lived in an assisted living center before being placed under hospice care on the advice of her son

"I have a lousy memory too," the reporter said to Louise.

"Your memory couldn't be as bad or you'd be lying here where I am," Louise responded with a chuckle as she pulled her blanket up for warmth.

"Today was a down day for her," Jaramillo said. "Usually you'll find her at two in the afternoon watching her soap operas, talking about what she wants for dinner and reading the newspapers. And most of the time she'll eat with everyone else at the dining room table. But today was just not a good day."

On a more normal day, Louise, a former executive secretary for a California mayor, is more likely to be found out on a patio reading a mystery or visiting with a volunteer who comes to see her twice a week and takes her to church on Sunday. A counselor also comes in and they talk about her end of life issues.

"She's resigned herself to dying," Jaramillo said. "She's always been one of those people whose cup is half empty. Now she has caregivers round the clock, people who are always nice to her and she's happier than ever. To me, it is these caregivers who have made such a difference in her life."

Louise was Casa de la Luz's second hospice patient. She and the woman who was the hospice's first patient arrived from the same assisted living center and became very good friends. That woman died about a month ago.

For Louise, "this is probably the first time in her life that she's had someone right there for her," Jaramillo said. "If she should slip away tonight, she won't do it alone. She knows that here someone will bring her food. She knows that someone will be sitting with her tonight when she has her chest pains. There will be someone beside her to rub her back and hold her hands and talk gently to her while she falls asleep. She doesn't have to be afraid ever again."

Among the hospice patients Jaramillo has fondest memories of is Charlie, a former custodian who died not long ago in his mid-80s.

Charlie, said Jaramillo, "was one of the neatest people in terms of appearance I have ever met." He took a shower every day, carefully combed his hair and wanted an ironed shirt every day to go out and feed scraps to the birds and rabbits. At night he seldom missed a meal with other patients in the dining room.

"As a custodian all his life, for him to be at Kanmar Place where everything would be so neat and orderly was just a dream," Jaramillo said. "He never had a bad day. He got up every day looking for sunshine and he found it. He was a proud man and he tried to make the best of everything."

Volunteers would pick up his wife at a nearby apartment and she'd spend the day with him, most of the time curled up alongside him on the bed. The volunteers would help look after her later while she moved in with a daughter so Charlie didn't have to worry about her any more. He knew he was never going home, Jaramillo said.

One day, when her days with the hospice are over, Jaramillo said she would look back most on the difference her staff has made in the lives of so many people … the nurse who always seems to know when someone needs her, the chaplain who is always reaching out.

"It isn't me," Jaramillo said. "I have 126 patients out there. There's no way I can touch them all. I have good people who do."

*Names of patients have been changed out of respect for their privacy.

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