For Stephanie Casto, saying goodbye to her mother was something she was forced to do years before her mother's death last December.
"They refer to Alzheimer's as 'the long goodbye,' and I had to say goodbye to my mom emotionally long before she was gone physically," Casto said. "That part was probably the hardest to deal with - there was a time where it just hit me that I would never have a normal conversation with her again. That's when I grieved the most."
Casto is one of a growing number of people who have become caregivers for an ailing Alzheimer's patient, and with rates of the disease predicted to rise in the coming years, more and more families are expected to have to deal with its emotional and financial burdens.
According to a report released last week by the Alzheimer's Association, 37,000 West Virginians currently suffer from Alzheimer's, and rates of the disease are expected to grow by nearly 20 percent by 2025 to roughly 44,000. This year's report also explores the costs associated with care for a family member with dementia. A study found that 48 percent of caregivers had to cut back on their own personal expenses to afford dementia-related care, and more than one-third of caregivers reported losing income because their employment was disrupted.
When her mother began to experience severe short-term memory loss and paranoia, Casto's days became focused entirely on her.
"She understood I had to work, but if I wasn't at work, she wanted me there. I became her security blanket," she said. "It was incredibly stressful; she would call me during work hours - once she called me 12 times throughout the day. I would answer every time, in case it was an emergency, but most often it was something like, 'What are we having for dinner?' That was a conversation we would have three or four times."
Alzheimer's disease cost the state nearly $368 million in Medicaid dollars in 2016, and the cost to the nearly 108,000 caregivers in West Virginia, in terms of the estimated value of roughly 123,000,000 hours of unpaid care, was roughly $1.5 billion in 2015.
A report from the independent research firm The Lewin Group, commissioned by the Alzheimer's Association, found that Medicare spending to care for people with Alzheimer's and other dementias is projected to increase more than fourfold to $589 billion nationally in 2050, and will account for one of every $3 Medicare will spend in 2050 and nearly all of what is spent on Medicare today.
"Alzheimer's is the sixth-leading cause of death in the United States, and it's the only disease that has increased in terms of the number of deaths attributed to it," said Bethany Hall, executive director of the Alzheimer's Association's West Virginia chapter. "Where every other disease - breast cancer, prostate cancer, HIV/AIDS - has decreased, Alzheimer's is climbing."
Nationally, an estimated 5.4 million Americans have Alzheimer's disease, and nearly 16 million family members and friends act as caregivers, providing financial, physical and emotional support. Alzheimer's disease, a progressive degenerative brain disease, is most common in people 65 and older, though roughly 10 percent of those diagnosed have early-onset Alzheimer's and are in their 30s, 40s or 50s. Age is the biggest factor in determining a person's chance of developing Alzheimer's, but other risk factors include lack of exercise, smoking, diabetes and depression.
"The out-of-pocket care costs for people with dementia is more than three times as expensive than for those caring for someone without dementia," Hall said. "This is one of the costliest diseases out there."
When her mother started showing symptoms, Casto applied for assistance through the state's Medicaid Aged and Disabled Waiver, but because her mother was still physically healthy, she was denied. Casto paid a neighbor to drop in on her mother for a couple of hours each day until a fall forced her into a nursing facility in December of 2014.
"It was easier for her to qualify for a nursing home than to get the more limited in-home care, which is something I don't understand," she said. "It became a different kind of disconnect for her - when she went into the nursing home, her mind didn't know that her body wasn't working correctly anymore. They had to put alarms on everything around her to try to prevent her from getting out of bed and falling."
Casto said that while more awareness of Alzheimer's disease is needed, the resources she was offered through the West Virginia Alzheimer's Association, including a caregiver class, made helping her mother through the disease easier.
"Things became a lot better when I realized that I had to live in her reality, because she couldn't live in mine anymore," she said.
Reach Lydia Nuzum at lydia.nuzum@wvgazettemail.com, 304-348-5189 or follow @lydianuzum on Twitter.