Anchorage Daily News

For a decade, home for Bill Margeson has been a room at the Anchorage Pioneers' Home plastered with family pictures and memorabilia from his college days.

Click to enlarge

Bill Margeson, a former college soccer star, now suffers from advanced Alzheimer's and cannot care for himself.

Story tools

Comment on this story

E-mail a friend

Print

Digg this

Seed Newsvine

Send link via AIM

Font size : A | A | A

Not any more.

The pioneers' home says his needs are too great and he can no longer be safely cared for there, according to letters provided by his daughter, Marty Margeson.

The elder Margeson is 92 with advanced Alzheimer's disease. He cannot walk or do anything for himself. He's on a feeding tube. He rarely talks. He's been hospitalized for two months, but now he's well enough to leave. But he is remaining in the hospital in the face of the Pioneer Home decision and while his daughter presses the case to get him back in the facility.

"It's like being kicked out of your home when you are at the very last part of your life," his daughter says.

Marty Margeson has written or called officials from Gov. Sarah Palin on down. While she's had specific complaints about his care there over the years, she thinks the pioneers' home remains the best place for him. Uprooting him now, when he's so frail, may only sicken him further or hasten his death, she says.

In Anchorage, elder care is a booming industry, but that doesn't mean families can easily find the right place for mom or dad or grandma. There are 160 assisted living homes specializing in care for seniors, but only two nursing homes, which still -- perhaps unfairly -- carry the stigma of the place old people go to die. The newer, homier nursing home usually has a waiting list.

FORMER SOCCER STAR

As a young man, Margeson was a soccer star at Brown University, which has named an athletic award after him. He was a Navy commander in World War II. He worked years as a financial adviser. His retirement check pays for part of his care, Marty said.

He started to decline in 1992 after a fall on the stairs at his business in Syracuse, N.Y., she said. In 1995, he moved in with her in Anchorage but within a year his dementia made it too hard to care for him as well as a young child, said Marty, a single mom who runs a bed and breakfast.

Her dad went into a small, family-run assisted living home for a while but a professional care coordinator -- who helps families get services -- thought he would soon need more help. In 1997 Marty moved him into the Anchorage Pioneers' Home, which was starting to bill itself as a facility that could handle residents with dementia.

According to the state Web site, the six Pioneer Homes provide "skilled nursing, personal care and other support services including end of life care. Many residents receive a level of service that would otherwise be delivered in a nursing home." Some residents are independent. Others rely on staff to feed them, give them their medicine, bathe them, help them use the bathroom.

Still, the homes are licensed as assisted living facilities, which are intended to be more homelike and operate under much less stringent rules than nursing homes. The state doesn't even require them to have a nurse on staff, though many, including the Pioneer Homes, do.

Margeson was admitted to Providence Alaska Medical Center on Dec. 16 with flu or pneumonia. He's been ready for discharge since Feb. 7. Providence has told his daughter that he could be cared for in an assisted living or nursing home and that Medicare likely would stop paying for his hospital stay starting Saturday.

REASON FOR REJECTION

So why can't Margeson return to the pioneers' home? State Pioneer Homes officials said they couldn't discuss any resident's situation.

In a letter dated Feb. 8 that Marty Margeson obtained from a Providence staff member, the home spelled out its reasoning. The letter, unsigned but on pioneers' home letterhead and addressed "To Whom It May Concern," said:

• It would be unsafe for him to be on a feeding tube in his old unit, which specialized in residents with dementia and Alzheimer's disease, because "staff cannot guarantee the proper behavior of fellow residents towards his special medical needs."

• He has a staph infection that requires "contact isolation procedures."

• He is at risk of blood clots and needs more frequent turning than the assisted living home staff can provide.

If the pioneers' home won't take him back, Marty is trying to get him into Providence's Mary Conrad Center, which has mountain views, private rooms and a calming environment, but she said she's heard the wait could be two months.

"It's a very desperate situation," she said.

Anchorage has no shortage of nursing home beds, but families may not be satisfied with the options, said Susan Humphrey-Barnett, a Providence administrator overseeing operations apart from the main hospital. Providence Extended Care Center has open slots, but it's an older building with double rooms, long hallways, and a sterile, institutional feel. For a variety of reasons, Margeson needs a private room, his daughter said.

PROTECTING A PARENT

Marty Margeson has become practiced in the art of advocating for her dad. She's found problems with staffing and care at the pioneers' home over the years, and pushed to fix them. When the home cut back his baths to once a week and the taking of his vital signs to once a month, Marty's concerns got the attention of the national magazine Consumer Reports. It featured his situation prominently in a July 2005 story on assisted living.

The home has tried to keep him from returning from the hospital before, but eventually took him back.

This time, she has fired off letters to the governor, lieutenant governor and the state office in charge of assisted living licensing. She's called adult protective services, the long-term care ombudsman, the Disability Law Center of Alaska and the Alaska Mental Health Trust Authority.

No state law defines who is too ill for assisted living. Homes must be able to care for the residents they have and must spell out in a contract with each individual resident what services they will provide at what cost.

Decisions on whether residents are suitable are made case-by-case, said Virginia Smiley, director of the Alaska Pioneer Homes division. The homes don't accept residents on IVs nor, generally, those on feeding tubes, she said. Residents who leave for care in a hospital are assessed by a Pioneer Homes nurse before they can return.

"We try to provide end of life care but we would never keep someone in the home that we could not care for safely," Smiley said.

It's not unusual for a care home to say a resident is too ill to return after a hospital stay, and the news may be difficult for a family to accept, said Amanda Biggs, supervisor of care coordinators for the Alzheimer's Disease Resource Agency of Alaska. But most usually come to terms with the decision, she said.

Still, homes must be careful not to bar someone without good reason.

POSSIBLE DISCRIMINATION

Ron Cowan, an investigator with the Disability Law Center of Alaska, has sent letters to the state assisted living licensing office and to the Anchorage Pioneers' Home administrator about Margeson's situation.

If Marty's version of events is correct, the home may be discriminating against her father, Cowan wrote to the licensing manager. Cowan also wrote that Margeson is at high risk of "transfer trauma" at this stage in his life. Studies have shown that nursing home residents who are moved involuntarily may become more ill or may die, though that's less likely if they are adequately prepared and the new facility is well equipped.

Marty Margeson goes to Providence hospital every day to visit her dad. She's convinced he hasn't given up on life. She still sees a twinkle in his eyes.

Daily News reporter Lisa Demer can be reached at ldemer@adn.com and 257-4390.

Long-term care options

Here is a snapshot of a few places in Anchorage that offer long-term care for the elderly. Nursing homes tend to be far more expensive than assisted living facilities because of round-the-clock nurses and other services. Many residents receive Medicaid benefits that cover at least part of the bill. Alaska Pioneer Homes residents can receive a state subsidy even if their incomes are too high for Medicaid.

ANCHORAGE PIONEERS' HOME (ASSISTED LIVING HOME)

• Can house up to 165 residents, some in private rooms, some doubles.

• Fees start at $2,240 per month for residents who mainly want housing, meals and help with appointments. Costs go up from there to $5,880 for the highest level of care including 24-hour supervision and intermittent health care.

MARY CONRAD CENTER (NURSING HOME)

• Can house up to 90 residents, most in private rooms.

• Monthly bills to Medicaid averaged about $12,000 per resident in 2006. Provides 24-hour nursing care and rehabilitation services. For individuals with the highest medical needs outside of a hospital.

GENEVIEVE ASSISTED LIVING HOME

• Group of three homes each housing four to five residents who get 24-hour supervision. Specializes in individuals with Alzheimer's disease. Cannot accept those who need extensive lifting. Monitoring by an RN, who owns the homes along with her husband.

• Monthly charges range from $4,500 to $5,500 depending on the resident's needs.

Sources: State of Alaska, Providence Health System, Genevieve home