Alzheimer’s disease and dementia are emotionally devastating to patients and their loved ones. Families feel sorrow, confusion and anger. Many don’t know where to turn for support or guidance.
To offer families a platform for discussing their experiences, U.S. News Health held a live Twitter chat Feb. 13 and invited leading authors and bloggers to participate in the discussion:
- David Shenk, author of “The Forgetting: Alzheimer’s Portrait of an Epidemic” and senior adviser to the Cure Alzheimer’s Fund;
- Dan Browning, creator of the NextAvenue Blog “Under 60 and Living With Dementia” and health reporter for the Star Tribune in Minnesota;
- Gary Small, author of “The Alzheimer’s Prevention Program” and director of the UCLA Longevity Center;
- Jeanne Walker, author of "The Geography of Memory: A Pilgrimage through Alzheimer's" and English professor at the University of Delaware;
- Michelle Seitzer, freelance elder care writer and senior blogger/social media specialist for senior housing and search leader at SeniorsforLiving.com, a service that allows people to search senior housing options;
- Alex Witchel, author of “All Gone: A Memoir of My Mother’s Dementia, With Refreshments” and a staff writer at the New York Times Magazine.
Each of the participants experienced the extreme ups and downs of caring for someone with Alzheimer’s, at home or in a nursing facility. Participants discussed what it’s like to witness the degeneration of their loved ones’ minds and bodies. Despite their grief, many said they grew from the experience, gaining a deeper understanding of themselves and how their families became closer through the various trials they faced. U.S. News held the discussion as part of the launch of U.S. News’ Best Nursing Homes 2014 on Feb. 26, which offers consumers a user-friendly tool to help them access government data and choose a high-performing nursing home in their community. It also offers advice about senior care and other aging-related issues.
Physical and Emotional
Participants in the chat discussed common reflections about the phases they noticed their loved ones with Alzheimer’s go through. The disease begins to exhibit itself with changes in personality, followed by changes in memory and mood swings. People become confused and often wander. As Alzheimer’s worsens it takes a toll on people’s bodies.
As the disease progresses, patients become depressed because they feel they are losing control of their lives, tweeted Gary Small, director of the UCLA Longevity Center. In later stages, people tend to socially withdraw, tweeted Cori Everson, a social worker at Mayo Clinic Health System’s Memory Care Clinic in Eau Claire, Wis.
Memory lapses are unpredictable, as are the consequences. Author and journalist Alex Witchel saw her mother take the wrong medications, and once found her sitting inside the house in a winter coat, overheated, not knowing where she was. Dan Browning from the Star Tribune recalls an incident in which his wife started looking through her purse while driving the car and skidded into an intersection. On another occasion, he found her wandering 7 miles away in the snow. Rosie Perera, a participant in the chat, noted that her mother once got lost once while driving and ended up 100 miles away in another state. Shelley Webb, a registered nurse and geriatric care manager, wrote that her father, who had dementia, bought a truck and had it delivered to her house. "He was confused about why they brought it, but happy they left it," she tweeted. "We couldn't return it. He signed papers."
Emotional and memory problems are only the beginning. Eventually the brain loses its ability to communicate with the body, resulting in the progressive deterioration and eventual shut-down of basic bodily functions, offered writer Michelle Seitzer.
Browning tweeted that his wife has trouble speaking because of her dementia. She chokes on food and her muscles are wasting, he wrote. Other ailments tend to accompany Alzheimer’s, such as falls, urinary tract infections, dehydration and malnutrition, Webb tweeted. “The very human instinct is to hope that the disease won’t get worse. But it always will. Stages are knowable. Be proactive,” tweeted David Shenk, author.
Becoming a caregiver
Spouses, adult children or siblings often take care of their memory-impaired loved ones at home. They may decide to hire a nurse, or they may work full-time to provide care themselves, including administering medications, helping with meals, bathing or bathroom duties. The care they have to provide will become more involved as the disease worsens. "My decision to become a caregiver [for my wife] was made when I said, ‘I do,’ in 1990,” Browning tweeted.
He is part of an enormous community of caregivers. In 2012, more than 15 million people provided 17.5 billion hours of unpaid care to people with Alzheimer’s, the Alzheimer’s Association estimates.
For many, the experience can lead to physical and emotional burnout, including depression, Shenk wrote. He stressed that caregivers need to take care of themselves. Caregivers often must seek help from family and friends, but all too often they can't get the help they need. For Linda Owen, a participant in the chat, there was no one else in town to turn to. “Not how I planned to spend retirement but trying to do it well,” she wrote.
Browning called the day-to-day emotions of caring for his wife a “roller coaster.”
“Look for the high points and enjoy the view,” he said. “They get you through the terror.”
Nursing Home Care
Sooner or later, many caregivers for people with Alzheimer’s or other dementia realize they have reached the limit of the help they can provide at home, even with the support of visiting nurses. Then comes the next hurdle: Seeking assisted-living or nursing-home care. According to the Centers for Disease Control and Prevention, approximately 42 percent of those in assisted-living or other residential facilities in 2010 had Alzheimer’s or another form of dementia.
Shenk tweeted that it was important for caregivers not to feel guilty for using a nursing home.
Many organizations offer guidance to those seeking nursing home care for a loved one with Alzheimer's or other forms of dementia. The Alzheimer's Association provides a series of tip sheets about how you can advocate for your mom or dad in a home. The National Institute on Aging offers a guidebook about caring for someone with Alzheimer's and for getting legal documents in order. The government's webpage, Nursing Home Compare, provides a search tool that allows people to see how nursing homes in their area perform against each other, using federal and state standards. U.S. News Best Nursing Homes uses data from Nursing Home Compare to provide a much more user-friendly tool, along with a list of articles to guide families in their search.
Moments of Triumph and Hope
As heartbreaking as the disease can be, some participants found moments of hope and understanding. They became closer with their families and found comfort in moments of humor. Shenk wrote that families often tell him there can be many life-affirming moments. Browning tweeted that he learned to love the essence of his wife despite the disease.
Author Jeanne Walker, Author, tweeted that she rediscovered the mother she knew earlier in life. “It was comforting to think of my mother’s past ‘selves’ coming out,” she wrote. Her mother’s past “selves” reminded her of things she had forgotten, she wrote.
Perera wrote that it was important to savor humor. “We save funny quotes from mom, stories like when she put a panty liner in the church offering plate,” she wrote.
Walker agreed. “Don’t try to set them straight. You can’t,” she tweeted.
“Laugh when something’s funny. Laughter is close to tears, but better for you.”
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