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Care Managers Help Patients Navigate Medical Maze

STEVE INSKEEP, host:

Next, we'll report on what to do when the testing brings bad news. There's a business designed to help people who feel overwhelmed by caring for a family member. Care managers navigate a maze of medical, psychological, legal and other choices. NPR's Patricia Neighmond reports.

PATRICIA NEIGHMOND reporting:

Kimberly lives in California's San Fernando Valley not far from her parents. At 34, she says she's the first among her friends to have to cope with a parent's serious illness. She doesn't want her last name used. A few years ago, her father had as stroke which left him disabled.

KIMBERLY (Coping with Ailing Parent): But then in October, he had another stroke that put him a little bit over the edge where he needed somebody a lot more, you know, like every minute of every day. He couldn't be left along anymore, really similar to, I guess, an Alzheimer's patient. He has an advanced dementia, they call it.

NEIGHMOND: Kimberly's parents are retired and live on a fixed income. They couldn't afford to hire someone to help care for her father. Kimberly's mother was getting exhausted. Kimberly knew she had to help. She just had no idea where to begin.

KIMBERLY: I wanted to help my mom. I wanted to--I just wanted somebody to give me options, I guess, to let me know what to do because I was completely lost. I wanted to help, but I didn't know what to do. I didn't know who to call. The doctors were no help, because the doctors are solely, you know, `He had a stroke, so this, this, this about the brain,' nothing about just living.

NEIGHMOND: Kimberly scoured the Internet and didn't come up with much. She was in tears by the time she called Nancy Wexler, a professional care manager. Wexler describes her job as quickly figuring out what families need from many different angles.

Mr. NANCY WEXLER (Professional Care Manager): It's about filling in the cracks, finding things that could add quality of life to the family, which is our client, the patient and the family. The caregiver needs more quality of life. The patient needs better quality of life, and that may be medical care. They may need to have legal work done ASAP.

NEIGHMOND: People also need to know what insurance covers and what it doesn't. They need to know what kind of free care might be available, about resources in the community like adult day care centers. Kimberly.

KIMBERLY: She told me everything that's available to me, everything that she could put me in touch with, lawyers for trust funds and power of attorney, specific geriatric care doctors, caregivers. She has a nurse that screens caregivers for you.

NEIGHMOND: Kimberly met with Wexler. Together, they came up with a concrete plan. First on the list, a visit to the parents' home to assess it for safety. Nancy Wexler.

Ms. WEXLER: And we see it's cluttered and dark. We find that we need smoke alarms.

NEIGHMOND: An appointment was set up with a geriatric specialist for Kimberly's father and with a lawyer to set up power of attorney for her mother. Wexler also suggested the family start with some sort of custodial care so Kimberly's mother could occasionally leave the house. Kimberly.

KIMBERLY: There's a day care center which actually might be better for my dad, because he still enjoys being social.

NEIGHMOND: For now, the ball is moving slowly, says Kimberly, but at least it's moving. She feels less helpless and more focused. But this type of care management isn't for everyone. It can be costly, running anywhere from $500 to $2,000 for an initial assessment.

Patricia Neighmond, NPR News.

INSKEEP: This is MORNING EDITION from NPR news. Transcript provided by NPR, Copyright NPR.

Award-winning journalist Patti Neighmond is NPR's health policy correspondent. Her reports air regularly on NPR newsmagazines All Things Considered, Morning Edition, and Weekend Edition.