Caregivers need help as much as the seriously ill

Feb 7, 2010 — Highlands Today

Gary Pinnell

Feb. 7, 2010 (McClatchy-Tribune Regional News delivered by Newstex) -- SEBRING -- When Marilyn Gaumer goes to the grocery store, she loads her husband and his wheelchair into their van. Then she rolls in her own wheelchair.

Although Robert, 73, has dementia and 90 percent of his heart function has been lost to seven or eight cardiac arrests, he's able to trail her wheelchair into the store.

The golden years didn't used to be like that for the Gaumers, who have been married for 52 years. They had a great life together.

"We used to go camping and go cruising," said Marilyn, 70. "All of a sudden, you find out that the wonderful life you had together is gone."

About 15 years ago, Robert's health began to fail. He had to retire after several heart attacks. And then it was kidney cancer, and then it was cancer of the esophagus.

"And then he really went downhill," Marilyn said. His weight dropped from 185 to 115 pounds. And now, worst of all, Robert has dementia.

From her wheelchair -- Marilyn has bone disease, arthritis and osteoporosis -- she constantly waits on her husband. She prepares his food. She sees to his medications. She puts on his oxygen mask. Ten minutes later, it's back in his lap. He asks the same questions, again and again, but he can't hear the answers, so she has to yell.

"It's like living with a stranger," Marilyn said Thursday.

Now she moves through life alone. She's a prisoner in her own home.

She did leave, once, just long enough to attend to an appointment with her own doctor. By the time she got back, Robert was panicky. He didn't know where she was.

Their children live in other states. Last week was rare; the grandchildren visited.

A home health care aide occasionally comes to bathe Robert.

"Other than that, we're on our own. If I walk the dog, I have to take him," she said.

"The children think I exaggerate about how little sleep I get," Marilyn said. That's the only time she has to herself -- when Robert dozes. Until December, that wasn't often. Now he has a prescription, so he sleeps through the night.

What do to?

Marilyn says that since Robert Gaumer got dementia, he's the most stubborn man she ever met. But once, she got a little stubborn too, which she occasionally regrets. There was a time when they could have bought private health insurance. It might have paid for home health care, adult day care, or respite care should Marilyn need time to relax at a movie, visit a friend, buy groceries, or go to the doctor.

"I wish I had done that," Marilyn said.

Private health insurance is the primary source of medical coverage for those under age 65, says the "Legal Guide for the Seriously Ill," commissioned by the National Hospice and Palliative Care Organization. Plans vary, but some cover simple hospice and comfort care, while a few allow cutting-edge treatments.

Some may be entitled to veteran's benefits, which include income and health care benefits, the guide says.

Medicare provides health-care benefits to seniors and people who have received Social Security disability benefits for at least two years. Hospice is a key Medicare benefit for persons with life-limiting illness.

Low-income adults and their children can apply for Medicaid medical and long-term care benefits.

Special problems

James Goad, 56, of Sebring, was in an automobile accident 33 years earlier. He had used a walker or a cane ever since. Last spring, he got seriously ill. Bleeding internally, he spent two months in bed at an Altamonte Springs hospital, north of Orlando.

However, when it was time to leave the hospital, Goad couldn't walk, said his mother, Gloria, 83, who has been taking care of him since April.

The principal problem is that Goad can't get to a doctor, so he can't get the medicine he needs, his mother said. Doctors can't prescribe drugs to patients they haven't seen.

The Goads live in a townhouse. Unable to negotiate the 14 steps, James, who weighs 300 pounds, has to be carried out on a stretcher by a medical transport crew, which costs $300 each way. The Goads can't afford that.

Medicaid won't pay. Other than the hospital bed, the state has provided nothing, Gloria said.

"We can't get him to the doctor. We have tried everything, and we can't get a doctor to come into our home," Gloria said. "Doctors don't make house calls."

Pallative care

Harold Conner has cared for his son in their home since 1989. Struck by a car in August 1986 while visiting his biological mother in New Jersey, Michael suffered a severe head injury.

Bad luck turned to worse luck. In 1988, Michael suffered additional anoxic brain damage (inadequate oxygen for several minutes) as a result of medical malpractice, said Harold. After that second incident, the prognosis was that Michael would die within five years.

His father decided to take Michael home.

"I was inspired to form Mountain Top Ministries and to utilize the people God sent to us to provide the care," Conner said. "I did believe, and still believe, that God was providing guidance to us in these matters, in answer to our prayer and the prayers of others."

After he decided to care for his son, the nurses and therapists thoroughly trained the family in daily care.In May 1989, Michael did go home.

If anything good can be found about being seriously ill or caring for someone who may never get better, maybe it's when there's enough money to pay for it all.

Even though Conner agreed to Michael's case management with Penn National, an insurance company out of Harrisburg, Pa., there was trouble.

"The PIP law in New Jersey clearly allows for all of the care Michael was receiving," Conner said. Nevertheless Conner felt the carrier wasn't helpful with a reasonable cost of care.

"In 2003, after all our resources were drained, we finally were able to get our attorney to file for arbitration on Michael's behalf," Conner said."The carrier was forced to pay for the basic of care beyond just the attendants." That included vital care such as physical therapy and interaction with the community around Michael.

If that seemed like good luck, shortly after the arbitration, NJPLIGA (Penn National's successor) said they were now responsible for the claim, but they weren't bound by the carrier's agreement. NJPLGAwould pay only the bills the arbitrator allowed, no matter the current cost.

Conner blames the flawed system on attorneys and insurance companies. "We could, I truly believe, provide more care in our general health care system and free our courts from the time-consuming task of repeatedly hearing the same false arguments from the insurance companies if we held attorneys accountable just to their own standards of ethics."

Today, Michael, 33, still lives with his father in southwest Sebring.

"By 1993, we realized that God was doing something very special through us," Conner said.

Why?

Even though the pills mean Robert Gaumer can now sleep all night, Marilyn still can't. Her bed is in a separate room, but she can't relax. Her ears are always listening, in case her husband awakens.

"My life is not mine," she said.

But she makes a distinction. She isn't trapped. She has placed her own life on hold.

She tells her story because she realizes she is one of many women here in Highlands County caring for their husbands. Some put their husbands in nursing homes. Not Marilyn.

"Is he going to wake up today? It's heartbreaking, and very sad, and I cry a lot, losing the guy I've been married to. But I will never give up on him, no matter how hard it is. I love this man to death, and he will stay home with me as long as I can handle it. I love him too much to see him in there. Several times a day, I tell him I love him."

ABA releases 'Legal Guide for Seriously Ill'

WASHINGTON, D.C. -- After a serious illness or injury, both the afflicted and their loved ones realize that it may be too late to get their financial and legal affairs in order.

"Legal Guide for the Seriously Ill" is an American Bar Association Commission on Law and Aging project commissioned by the National Hospice and Palliative Care Organization.

"The book provides critical tools that help readers understand their options, make informed decisions, and minimize some of the anxiety they may be feeling about their financial and legal affairs at this stage of life," said ABA President Carolyn B. Lamm.

"Hospice and palliative care organizations are frequently asked for information regarding end-of-life planning and decision-making," said J. Donald Schumacher, president of NHPCO. "This guide will be a tremendous resource to them as well as faith communities, caregiver organizations, aging service providers, hospitals and others."

The guide highlights legislative and regulatory changes, such as the American Recovery and Reinvestment Act of 2009, which subsidizes 35 percent of COBRA premiums for nine months. The book doesn't offer legal advice, but arms readers with knowledge.

The 50-page guide is available online at www.caringinfo.org/UserFiles/File/PDFs/AdvanceCare...

Highlands Today reporter Gary Pinnell can be reached at 863-386-5828 or gpinnell@highlandstoday.com

Newstex ID: KRTB-0290-41862867