WEST FARGO, N.D. - Patricia Muldoon spent years taking care of her disabled husband. As his condition deteriorated with age, she quit her job to be a round-the-clock caregiver so he could stay at home.
She devoted the last 15 years of her husband's life - he died in July at age 77 - to caring for the man who asked her four times to be his wife before she gave a heartfelt yes.
"All my life, I loved him to the moon and back," she said. "He was a lovely man."
But with little outside support, Muldoon sacrificed to care for her husband. She injured her back multiple times, and ultimately could no longer take care of him, requiring him to spend his last days in a nursing home.
Muldoon remains frustrated that the state didn't do more to help, since years of care in a nursing home - which typically costs $6,000 to $7,000 monthly - would have cost far more.
"The state seemed not to understand," said Muldoon, a former nurse's aide. Ten hours of respite care a week would have made a big difference, she said, at modest cost. "They still don't get the picture."
North Dakota ranks low in comparison to other states in the proportion of funding that is devoted to helping elderly residents remain at home. For every dollar, 85 cents went to nursing homes and 15 cents going to home- or community-based services, according to an analysis by AARP of 2011 figures.
"We know that older adults in North Dakota want to stay safe and independent at home as long as they can," said Josh Askvig, state director of AARP North Dakota. The advocacy group estimates that the money spent to support one person in a nursing home could pay for three in a home- or community-based setting.
The North Dakota Legislature is considering several bills that would help provide support for caregivers, the result of an interim study on the gaps in services and recommended solutions.
Proposals under House Bill 1038 include a $197,580 pilot project for caregiver training, $200,000 in federal funds for a respite care program, an increase of $1.5 million in support for service for the elderly and disabled, and a report on levels of state spending for nursing home care as well as home- and community-based support.
"These are, I think, some important steps," Askvig said of the proposals under consideration in the Legislature. North Dakota has made progress, he added. He estimated the proportion of funding for at-home care of the elderly probably now is closer to 20 percent than 15 percent from a few years ago.
But the challenges for taking care of the state's elderly will grow as the population ages, a study for lawmakers completed by North Dakota State University Extension pointed out. Between 2010 and 2040, the number of adults 85 and older in North Dakota is expected to grow by 43 percent, an increase of about 7,200 people. By 2025, 18 percent of the state's population is estimated to be 65 or older.
The 62,100 caregivers in North Dakota provide an estimated $860 million in uncompensated care, according to a study by AARP. The authors of the NDSU Extension study said those figures underscore the importance of supporting caregivers.
The study identified challenges facing caregivers, including:
• 80 percent provide nursing care, yet half reported receiving no training.
• 50 percent of caregivers surveyed reported insufficient respite care, adding to their stress and burden.
• Many reported experiencing a financial burden from their caregiving, including having to quit working or work fewer hours.
"There's always a challenge of finding enough money to pay for the institutional caregiving, which we need," said Jane Strommen, a gerontology specialist with the Extension Service and one of the report's authors. "The challenge is being able to find enough money for the entire continuum."
Although financial support for caregivers lags, "That's actually the most cost-effective way to care for the elderly," Strommen said.
"Especially in rural areas, providing home-based services is very challenging for a number of reasons," including workforce shortages and long distances, Strommen said. Even in urban areas, however, the availability of services does not always mean that adequate services are available, she said.
"My biggest hope is the study brings attention to the needs of caregivers," said Heather Fuller, an assistant professor of human development and family science at NDSU and another author of the legislative study. "The struggles are often pretty silent and pretty hidden."
Another bill before the Legislature, Senate Bill 2215, would establish discharge protocols for hospitals to ensure that caregivers have opportunities for instruction and training in providing aftercare.
Mike and Marilyn Worner, a retired couple in Mayville, are among the supporters for specifying discharge plans.
Last year, after Mike Worner came home from major shoulder surgery, Marilyn had conflicting instructions from the physician and nurses, and was confused about how to properly change her husband's bandages.
"I had no idea what to do," Marilyn Worner said. Luckily, a neighbor who was a retired nurse was able to help.
"We have no grievance against hospitals," Mike Worner said, adding his surgery turned out well. "In my opinion, we have a void in the laws."
Patricia Muldoon, who is 70 and relies on Social Security, uses a walker because of her back injuries. She once had a home aide who came in to clean her apartment and do her laundry, but that service was eliminated in budget cuts several years ago.
Her husband had suffered from polio as a child, which left his right side largely paralyzed. He worked despite his disability; first in a factory, then at a highway weigh station and finally as a greeter at a bingo hall.
But in his later years, he was stricken with post-polio and his health deteriorated. He fell frequently and developed dementia, increasing the burden of care and the toll on Muldoon's body, especially her bad back.
"I hope they pass this caregiver act," she said, referring to pending legislation. "I want other people to get that help that I didn't get. I hope something gets done, because people need help."