Couple struggles to find assistance for wife with dementia

Vern McKimmey of Lubec has been navigating the long‑term healthcare system on behalf of his wife, Carmen Flowers. Two years ago Flowers was diagnosed with frontotemporal dementia (FTD). She was 57 years old.
Flowers and her husband are living with a disease that claims over 16% of the U.S. population who are 65 and older. According to a 2010 MetLife Foundation survey, Alzheimer's disease, frontotemporal dementia and other forms of dementia are now the most feared disease of those over 55. The disease is feared more than cancer. McKimmey's mother died from it in 2009. He knows what it looks like, and he knows that he needs to find the right care for his wife. "It's what you do," he states firmly about the nature of commitment and caring for loved ones. But he says that doesn't mean he knew where to look for help.
According to the Alzheimer's Association, the cell damage caused by FTD leads to tissue shrinkage and reduced function in the brain's frontal and temporal lobes, which control planning and judgment; emotions, speaking and the understanding of speech; and certain types of movement. It is now thought to account for 10% to 15% of all dementia diagnoses. In those younger than age 65, FTD may account for up to 20% to 50% of dementia cases. People usually develop FTD in their 50s or early 60s, making the disorder relatively more common in this younger age group.
Flowers and McKimmey began planning as soon as they heard the August 2010 diagnosis. They have mourned as Flowers began to lose skills that are taken for granted: how to use a TV remote control, the process of taking a pill, washing clothes or preparing a meal, reading. The other skills, the skills learned during a life rich with professional success, and family memories are still triggered by words that McKimmey uses to prompt her. But Flowers' disease is progressing rapidly, and her husband has had to learn the hard way how to navigate the bureaucracy of healthcare services.
"I didn't know where to begin," McKimmey says. It is a warm July afternoon on a quiet weekend. The couple lives in a cozy trailer off the beaten track in Lubec. They are surrounded by woods and a rustling meadow. If ever there was a place to call the opposite of life in New York City, this is it. The couple moved to their Maine home in 2005. Even then, McKimmey says, his wife had the early stages of the disease. They just didn't know it at the time. But over the last six months the disease has progressed dramatically. In the last two months Flowers has lost the ability to function without help. She sits in a chair and smiles gently. McKimmey describes the disease. She picks up on a word he uses. "Sequencing. I can't. It's weird. So he has to tell me," she says. It is hard for her to find the right words. Sentences end up as fragments.
McKimmey works as the marketing manager for the nearby Roosevelt Campobello International Park. At first he was able to leave his wife by herself during the day. Friends would stop by and visit with Flowers and take her out for lunch. They still do. The waitresses know what Flowers likes. Now they help her with menu choices. But leaving Flowers at home alone with phone check‑ins is no longer an option.
"Up until this year Carmen didn't need a lot of care," he observes. Flowers began receiving Social Security disability payments starting at the end of 2010. "She worked all her life, she earned that," McKimmey says. But it's not enough to cover the $120 to $160 per day costs for a caregiver that Flowers now needs to remain safely in the home while he's at work. Doing the math, he explains, "I can't sustain it."
So he began investigating Medicare and MaineCare. "It's hard to understand what's available." He adds, "I'd never used social services before. I didn't know how to use it." He called the Eastern Area Agency on Aging. "They explained about MaineCare, so we applied." They went down to the Department of Health and Human Services (DHHS) office and learned about the program. After filling out paperwork, applying and waiting, they found that they didn't qualify for the program. "Even her Social Security disability disqualified her." He is still angry about the amount of wasted time spent on the process. "After the frustration, it just seemed so unjust. I couldn't figure out what to do."
A nurse from the doctor's office that treats Flowers turned out to be the lifesaver. She referred McKimmey to an individual in the MaineCare office who helped him apply for a long‑term care program tied to Medicare. "When we were down at DHHS that first time, no one told us about it," he says, shaking his head. At that first visit no one told him that a Goold assessment is an essential piece to long‑term nursing home care for his wife. The MaineCare specialist explained the importance of the assessment. Flowers' assessment found that she would qualify for a residential bed in a nursing home.
Flowers looks at her husband while he speaks. "It's been crazy," she says quietly. She spent her career as a commercial actress and spokesperson for such companies as Nutrisystem. She was an anchor for the Travel Channel, co‑hosting with the then young newcomer Matt Lauer. She is tall and trim with a friendly smile. At first glance her disease would not be recognized.
The idea of a nursing home does not appear to bother her. "It's the best for me, it's best for Vern. ... And I can walk around. It's a nice place." The local nursing home has many advantages, McKimmey notes. Her friends can visit and continue to take her out. He'll be able to visit her easily. Placing her in a nursing home outside of Lubec is something he hopes he won't have to do.
The latest scare has been seizures. Flowers suffered one that left her in a coma for three days. She has had smaller ones since then. They are waiting for a residential bed to open up at the nursing home. It's possible that with the seizures she may qualify for the nursing bed category of care. McKimmey explains, "The only hope right now is to be reassessed for the nursing home. What she has is fatal. There is no cure."
Living in the Lubec community has been of great help. People know Flowers and know of her condition. "Sharing her story goes hand‑in‑hand with who Carmen is," he says. It doesn't make it easier, but the couple has hoped from the day of the diagnosis that telling her story will help others with their own navigation of similar challenges.
Information about long‑term care is available at <www.maine.gov/dhhs/oes/resource/ltc.htm>. Information about Goold assessments is available at <www.maine.gov/dhhs/oes/home_care/goold.html>.