Wanted: a home away from home
Out-of-town Stanford Hospital patients rely on charitable housing programs, but not all find lodging available — or affordable
The Murray family is well-acquainted with uncertainty. Nothing has been stable since May, when Stanford doctors told Rick Murray, 55, he needed to get in line for a heart transplant.
Three years ago, the former Safeway manager from Jacksonville, Ore., was diagnosed with a rare genetic cardiac disorder that makes breathing and moving difficult and catapults his heart into dangerous rhythms.
Medication kept the condition in check until February, when his heart raced to 160 beats per minute and paramedics had to shock it back into rhythm. By May, Murray's heart was speeding for up to eight hours at a time, and he was hospitalized after his defibrillator fired twice in one week ("It's like getting kicked in the chest by a horse," he said).
At the end of June, he was airlifted to Stanford Hospital, which specializes in inherited heart disease and was first to identify his genetic condition. His wife, Vickie, followed in a car packed with their two children and hastily gathered belongings.
During the 11 days Rick Murray was in the hospital, the family shuttled to two different nearby hotels, moving because rooms were too costly or booked.
After he was released, the family moved three more times, still wanting to be near the hospital as he awaited word on his eligibility for the transplant list.
At a time when critically ill Stanford Hospital patients and their families often face staggering medical and financial burdens, they are additionally challenged to find affordable places to live for extended periods.
Many are able to find a home away from home through several affordable housing programs the hospital administers. But patients with larger families or longer timeframes, like the Murrays, can have a hard time finding stable accommodations in the hospital's pricey environs.
"It's a stress for people," said Michael Thomas, who manages Stanford Hospital's social-work department.
The department handles housing requests from patients who come from all over the globe for specialized procedures. Almost one-third of heart-transplant patients and nearly half of blood- and marrow-transplant patients live more than 50 miles from Stanford, according to the hospital.
Forty percent of inpatients receiving care for heart ailments, cancer, neurological conditions or orthopedic problems normally reside beyond that radius.
The numbers are likely to rise, Thomas said. As the economic downturn results in fewer people seeking primary care, smaller hospitals will increasingly see sicker patients, whom they will refer to Stanford for procedures they cannot perform, he predicted.
Most transplants, surgeries and cancer treatments require patients to stay near the hospital between three weeks and three months, he said.
Insurance plans do not usually provide a housing allowance.
"It can be a challenge, but we like to think we take some of that burden off people by providing direction," Thomas said.
Ill children and their caregivers who come from more than 50 miles away can stay at Stanford's Ronald McDonald House for unlimited periods at a suggested $10 per night.
Adult patients typically lodge at local hotels or Stanford's $140-a-night (single occupancy) Schwab Residential Center — if they can afford it.
Families on limited budgets have a harder time in up-market Silicon Valley, however.
To help those patients, the hospital has negotiated discounted rates with local motels and administers two charitable housing programs that allow patients and caregivers to pay what they can afford.
For some patients, these programs make treatment possible.
Rosacelia Beavers, 54, would not be able to receive chemotherapy at Stanford were it not for HOME Apartments, a 40-unit complex across the street from the hospital. She has stayed there for more than four months with her brother and son while visiting the hospital up to four times a week for blood and platelet infusions to fight leukemia.
The family cannot afford to pay for a hotel room or for the gas needed for the five-hour roundtrip drive from their Merced County home.
"We're going through a lot," said her brother, Sergio Caballero, 53, mentioning other relatives who are either ill or unemployed.
At HOME Apartments, guests pay a sliding scale of up to $100 per night.
The residence was founded and is run by the all-female Santa Clara County chapter of the Assistance League, a national philanthropic organization. It offers one-bedroom apartments with twin beds, private balconies and kitchens. The patient and one caregiver must stay for at least a week. Exceptions occasionally allow for a child or second caregiver to join them.
"I feel like I'm in my house," Caballero said.
Besides covering the walls with pink wallpaper and floral art, the volunteers make guests feel at home by filling welcome packages with toiletries and baking pies around the holidays.
"We had a couple of members who had husbands in the hospital, and they saw all these people spreading out on couches," said Dorothy Mulhern, who chairs the group's philanthropic program.
She and other volunteers began receiving patients in five apartments in 1978, and they opened the four-floor building in 1987.
Caballero said the HOME apartment has been a blessing. But he had become nervous last month as their stay approached the residence's 12-week limit for guests, while his sister's treatment would continue at least three more months — longer if she needed a bone-marrow transplant.
The social-work department, which coordinates patient stays, grants case-by-case extensions if there is "significant medical necessity," Thomas said. Caballero's nephew approached the department about an extension, which it granted because an infection had prolonged his sister's treatment.
Randy and Stacy Taresh appreciated being with people who were going through the same medical hardships when they stayed at HOME Apartments for three months at the end of last year.
Randy Taresh was recovering from a surgery that cut away aggressive tumors in his nose and neck.
"You still had your own little world, your privacy, but it was a little release there," he said.
The Brookings, Ore., couple came to Stanford with a referral from local doctors, who had never seen his rare form of cancer.
"If it had been another two weeks, we wouldn't be sitting here," said Stacy Taresh, 43, her hand clasped over her husband's. "He was that close."
The couple used another affiliated housing program when they returned in July for reconstructive surgery that attached cartilage from Randy's ear to his nostril.
Through the Community Home Program, the couple stayed for a little more than a week in a volunteer host's Portola Valley home, a 10-minute drive from the hospital. They had a ground-floor suite to themselves and full use of the kitchen and patio, overlooking tree-lined hills and a golden valley.
"We were very grateful," Stacy Taresh said. "How wonderful of somebody to share their home with perfect strangers."
The home is one of 14 within 10 miles of the hospital. Most volunteer hosts belong to Menlo Park Presbyterian Church, whose members started hosting patients 30 years ago.
Suzanne Passailaigue, a semi-retired property manager, has coordinated the program for three years. She decided to take in displaced families six years ago, after scheduling out-of-state patients for surgery while working at the hospital.
"I realized there was a great need for furnished short-term housing," she said.
She places most applicants in shared homes, which host one or two guests for up to one week (stays can sometimes extend to two weeks). Four private condominiums can accommodate four people for up to four months.
"It's been rewarding to offer housing to people who come from such a distance," she said. "I'm just so happy to give them a clean, quiet place where they know they're welcome ... a little home away from home."
For families like the Tareshes, the program means a chance for treatment.
"We would probably never have been able to come down here at this time to do the surgery if not for the host home," Stacy Taresh said. "We just didn't have the money to pay for the hotel, food, gas for nine days."
An educational aide, she stopped earning a paycheck when her emergency leave ran out. Her husband, a correctional officer, will return to work in a few months. If the couple's house had not been destroyed in 2008 when the ground beneath it cracked (a misfortune not covered by their insurance), they would have lost it when treatment costs escalated, she said.
"When you get really catastrophically ill ... you can lose the rest of your life also," she said.
Guests in host homes stay at no cost but are encouraged to donate at least $15 per day.
For all the efforts by Stanford, local hotels and community volunteers to house patients and their caregivers, gaps in the system remain. The availability of host homes fluctuates, and condominiums are usually occupied, Passailaigue said.
The HOME Apartments are usually nearly full, and post-operative patients get priority, Mulhern said.
"We have to spread our services out throughout a lot of people," Thomas said. The social-work department, which selects guests for both programs, prioritizes families with greater medical needs and tighter budgets when demand is high, he said.
"Do we have people sleeping in the hospital?" he asked. "We pretty much don't."
In a small number of cases, however, people cannot afford to be treated at Stanford, he said.
"If somebody has zero money, zero access to financial support, we can't pay for all of their housing, all of their food, all of their transport.
"Sometimes people need to make hard decisions about whether they can really be here," Thomas said.
Finding housing is most problematic for patients with larger families or indefinite treatment timeframes, like Rick Murray. HOME Apartments and most host homes do not allow more than two people. Extended-stay hotels in the area run at least $4,000 a month, while motels are not a feasible long-term option for a family, said Vickie Murray, a small, sprightly woman in her early 50s. The family moved into an extended-stay hotel in Belmont but had to leave after two-and-a-half weeks because the hotel was booked.
The Murrays, who are originally from San Mateo, have relatives in the area, but staying with them is not an option.
"If I said at the end of the week I was having surgery, we could probably cram ourselves into someone's house," said Rick Murray from an armchair in the Belmont hotel, a polo shirt hiding the heart monitor strapped to his chest. "It's an unknown timeframe."
Although he was approved for the transplant list in early August, there is no way to tell when his heart will break down or a replacement will become available.
"Most people know the date of a surgery," he said, with fatigue in his voice. "How can you plan around something you don't know, except trying to be in the best place that you can be, knowing what lays ahead?"
Murray can await a transplant at home and take an air ambulance when the time comes, but the family wants to be close to Stanford's facilities and avoid uprooting their children suddenly. There is no hospital close to their Oregon home, and doctors there have little familiarity with Murray's condition or complicated history.
"It's all pretty scary for us," Vickie Murray said. "All I know is it makes sense to be in the area. That's where my husband is going to get the best care possible."
After the transplant, he will have to visit the hospital almost daily for three months and return regularly for at least three years.
The couple started looking at apartments, but none were affordable.
"The expense would be huge," Rick Murray said. "You would have the rent and all the costs that go into establishing a rental ... and you're also paying a mortgage on the other end."
The family also pays an average of $2,300 monthly for out-of-pocket medical expenses, and travel, dining and other living costs add up. The San Mateo chapter of the Italian Catholic Federation, to which the couple belongs, set up a donation fund to help with their housing and medical costs (rickmurrayhearttransplantfund.org
"You can go bankrupt when something like this happens to you," Vickie Murray said. She is the family's sole breadwinner and has lost income since she hired two people to keep her small computer business afloat while she cares for her husband.
"You could see how something like this can devastate a family."
The Murrays returned to Oregon mid-August to settle their affairs and figure out where they will live.
"My life is a big mystery," Vickie Murray said. "The anxiety is starting to come in."
"We've been put in a situation we obviously never expected, and we're trying to make it work in one of the most expensive areas in the world."