Frederick and Clare List hold hands as they stroll on paved paths surrounded with gardens of shrubs, flowers, fountains and ponds.
As they walk, they greet friends. They step inside for lunch, still holding hands while he eats. It sounds like the perfect retirement.
But the flowers bloom outside the Carriage House of Bay City, Mich., a skilled nursing care facility. The greetings go to nurses and aides. Fred List, 78, sits in a chair with an attached tray as Clare List, 75, serves him small portions of pureed food.
“I feel guilty if I don’t come every day,” Clare List said. “I have to see for myself how he is. A neighbor told me, `That isn’t guilt, Clare, it’s love.’ … I love this guy. He’s a wonderful guy.”
Millions of families struggle with that tug between guilt and love every day, said Patricia Anderson, assistant vice president of reimbursement for the Health Care Association of Michigan in Lansing. Putting a loved one in a nursing home is one of life’s most difficult decisions.
What may help is making the decision years before it’s needed, said Reginald Carter, executive vice president of the Health Care Association of Michigan. Families need to figure out how to pay for long-term care even before they start looking at nursing homes, added Ray Dubay, owner-administrator of the Carriage House of Bay City. The Lists were more prepared than most families.
Clare List noticed her husband showing signs of Alzheimer’s disease in 1991. He wasn’t diagnosed with it until 1995. She put him on a waiting list at the Carriage House, where her mother lived out her final years and where the couple had volunteered since 1972.
List took care of her husband at home until a heart attack in 1996 sent a blood clot to his brain. Doctors told her he would live, but he would need skilled care she couldn’t provide. He moved into the Carriage House on Oct. 16, 1996.
“I knew the people,” she said. “I knew how they care.”
She knew pictures and wallpaper covered the white institutional walls. Favorite chairs stand alongside hospital beds. Activities are offered each day. Residents who can’t participate go for walks with aides. Everyone — from nurses to custodians to management — greet her husband by name in the halls.
“I like the atmosphere,” she said.
Dubay, of the Carriage House, said people sometimes visit as long as two years before they need care. Others come straight from the hospital, making the decision days after a traumatic injury.
“I think a lot of them get curious as soon as they have a relative or friend in another nursing home,” Dubay said. “They want to take a look themselves.”
Dubay suggested that families visit several homes to check out the buildings and staff.
Then, Dubay said, families should try the food and read the activity schedule. Families should talk to residents and visitors, ask to see family satisfaction reports and state inspection records. Some of that information is available at the Medicare site.
Early shopping is critical in Bay County, which is unique in the state. Across the state, about 87 percent of nursing home beds are full. In Bay County, though, between 97 and 99 percent are full, Anderson said.
List knows her husband’s name came up on the list several times after he was diagnosed with Alzheimer’s, but she delayed as long as she could.
Even though she’s comfortable with her husband’s home, it hasn’t been an easy four years for either of them.
Long-term care is expensive. Anderson said the average cost of nursing home care in Michigan is $130 a day. In Michigan, the cost ranges from about $100 to $200, depending on the facility and location.
Clare List paid the bill herself for two years. But she couldn’t keep up and applied for Medicaid.
“I have to keep on living,” she said. “I have to pay taxes, the house needs repairs.”
Few people plan for long-term care, Dubay said. Out of 165 Carriage House residents, only two or three have private insurance, Dubay estimated.
Medicaid will pick up the cost, but it isn’t the answer for everyone.
Dubay said the state requires people use most of their own assets and income before tapping state funds for nursing home care.
The finances are a heavy burden, but far from the only one for Clare List. Frederick List rarely acknowledges visitors. His wife occasionally gets a “yeah” or “hello” to her questions and greetings. But smiles are rare.
“There are times when it gets awfully lonely for people,” she said.
