Photo courtesy of Africa Studio/Adobe Stock
By Renee Sklarew
It’s the hardest job you’ll ever love. That’s how some caregivers describe their efforts to support a senior in need. Despite the obvious hardships and challenges, most caregivers will tell you they have no regrets and that the work of caregiving is a labor of love. This is a story of people who selflessly help others and the resources and partnerships available in Northern Virginia to allow them to triumph.
Northern Virginia has a growing cohort of seniors, and this population remains engaged, active and mostly self-reliant. The trend to move away from the region has altered, and many seniors choose to age in place, staying in their homes to be close to friends and favorite businesses, according to the Administration on Aging. Local government and private industry have reacted by implementing a wide range of support services for seniors, such as specialized transportation and adult day centers. The goal is to help people of all ages and abilities live independently.
The Virginia Department on Aging predicts that Virginians aged 60 and over will number 25 percent of the state’s population by the year 2025. Along with the hordes of baby boomers reaching retirement, Virginians age 85 and older will increase dramatically—five times faster than the state’s entire population. Though the majority of seniors living in Northern Virginia are healthier and wealthier than the rest of the nation, 11 percent do require daily personal care from either a paid or unpaid source.
So who’s looking after these seniors? You probably know a few or have taken on the duties yourself. Today, it’s family, friends and neighbors providing 80 percent of the long-term care assistance for aging adults in need, which brings us to the caregivers—those unsung heroes devoting time, energy and money. Whether they’re delivering groceries or driving loved ones to medical appointments, caregivers are having an impact on the health of our community every day.
So You’re a Caregiver
Steve Rochon was visiting his mother in New Orleans the day before Hurricane Katrina devastated the city. He told his mother, Ursula Jupiter, to pack her suitcase. “We’re going to Virginia, and you’re coming with us,” he said. Ever since, he and his wife, Shirley, have cared for his mother in their home, with the help of private nursing assistant Jacqueline Duah, who bathes, drives and provides respite time for the Rochons. As Jupiter’s Alzheimer’s disease and Parkinson’s progresses, the family strives to anticipate each new step in her care.
Rochon says the adult day health program in Lincolnia has been a lifesaver. His 92-year-old mother attends the program five days a week for eight hours where she participates in activities and socializes with friends. “It has given my mother longevity. If it wasn’t for that program, we wouldn’t make it,” says Rochon. “They take such great care of her, and I know she gives them challenges. She’s outspoken, but they’re so patient. If there’s an issue, I can still go about my day and know she’s in the safest place there is.”
The Rochons are not unusual. A person reaching the age of 65 today has an average life expectancy of nearly 20 additional years, and as they age, their needs grow exponentially. As a result, adult children are becoming full-time caregivers with little time for themselves or recognition that they’ve taken on this role.
Lesley Katz is an aging program specialist with the Loudoun County Area Agency on Aging. She connects older adults and caregivers with resources, manages the county’s caregiver education and training program and facilitates a support group for caregivers of people with dementia. “They don’t have to have a formal diagnosis of Alzheimer’s disease to participate,” explains Katz, who says that the caregiver label surprises some people. “They say, ‘I’m not a caregiver. This is just my mom; I drive her to appointments,’” notes Katz. “They don’t view this as a formal agreement; they don’t have that conversation. An adult child doesn’t know they’re acting in that role, even from a distance.”
Pat Trahan is a nurse who became a caregiver after her husband was paralyzed from a massive stroke in 2012. “I thought I could make it better if I took him to enough therapies and treatments,” Trahan explains. “You think it’s going to go away. It didn’t go away, but it has dramatically improved.” Today, he can no longer walk and requires assistance with activities of daily living, but Trahan has learned to accept the situation. “It’s our new life, and it’s working, whatever we’re doing.”
Many caregivers are spouses. Some find it incredibly difficult to handle the duties alone. Mary Krenie, a volunteer facilitator of the Caregiver Support Group in Manassas, has seen countless spouses become isolated as they’ve taken on round-the-clock duties. “Caregivers have a hard road. Imagine working all day, with somebody from the family checking on the person during the day, and then when you get home, it’s all yours. You’re preparing all the meals; frequently the person wakes the caregiver. It’s really difficult.”
Photo courtesy of Alexander Raths/Adobe Stock
Successful Caregiving Means Accessing Services
Grace Lynch, communications manager for Fairfax County Services for Older Adults, says people feel overwhelmed when they begin looking for services for seniors. One problem is that services are offered by multiple entities such as local governments, nonprofits and private businesses like home care agencies. “There is no one-stop shop,” Lynch explains. “And the various services have a range of eligibility requirements, fees and insurance reimbursements.
“Contributing to the confusion is that problems of older adults are often subtle and complex. People may have a hard time putting their arms around the problem, never mind identifying the services that can help.” Lynch adds: “For instance, an older adult may be questioning whether he or she should be driving but can’t conceive of getting around without a car. These can be very complicated issues.”
Lynch advises Fairfax County residents to call the Aging and Disability Caregiver Resource Line. She also encourages residents to check the Services for Older Adults webpage to find links to county services, recreational opportunities and webinars. The webinars delve into issues such as caregiving, Medicare 101 and dealing with chronic illness. “They’ll also find links to podcasts and videos that describe programs and services in-depth,” says Lynch.
Similarly, the Loudoun Area Agency on Aging oversees day programs, case management, supportive counseling and organizes senior trips. Katz says: “We help adults aged 55 or older, adults with disabilities and their caregivers. We want to be their first call.” The Arlington and Prince William County Offices on Aging offer similar services.
Residents of the City of Alexandria have a comprehensive support team at Senior Services of Alexandria, a nonprofit dedicated to fostering independence for seniors aging in place. SSA works in tandem with the city government through a team of 400 volunteers. They shop and deliver groceries, supply transportation and help care for pets. SSA has a partnership with AARP, Alexandria’s Division of Aging and Adult Services and other nonprofits to create a monthly speaker series.
SSA even sponsors a Friendly Visitor program to check on seniors in their home. “We serve as eyes and ears for family members,” says Mary Lee Anderson, executive director of SSA. “The volunteers develop a relationship and make meaningful connections.” Currently, SSA facilitates weekly visits for more than 60 local seniors, delivers two meals daily to 85 people and handles transportation services for nearly 1,500 disabled clients.
SeniorNavigator.org is a clearinghouse of links on pertinent topics. This comprehensive website answers questions commonly asked by caregivers and seniors living in Virginia. Organized into health, legal, housing and financial categories, the site invites seniors and their caregivers to email specific questions to their volunteer experts.
Clearly, the role of caregiver presents a plethora of complicated scenarios. It’s hard to know where to turn. Northern Virginia, however, has an impressive collection of resources available that connect seniors and their caregivers to the support services they need.
Supporting the Caregiver
Spend one day in the shoes of a caregiver, and you’ll see why this may be the hardest job you’ll ever have. Women shoulder the burden of care, and their average age is 49 years old. The caregiver herself may have health problems. She probably has a job and possibly cares for children at home. Many are elderly themselves. Thirty-four percent of caregivers are older than 65, and more than 40 percent are in high-burden situations. Levels of burden get measured by the number of hours care is provided, and according to studies conducted in 2015 by the National Alliance for Caregiving and AARP, a shocking 92 percent of all caregivers provide 21 or more hours of caregiving per week.
Sometimes a senior feels frustrated by his or her limitations and may not embrace the advice of their medical team or caregiver. Perhaps they resist moving to assisted living or refuse the services of a home care professional. In those situations, a caregiver may wish to enlist an expert trained in geriatric issues to present specific information and make relevant recommendations.
“You should not argue with someone who isn’t cooperative. Traditional ways don’t work,” states Michele Zimmer-Forster, a licensed clinical social worker and resident counselor. She founded Counseling and Coping Strategies LLC to help caregivers struggling to care for their loved ones. Zimmer-Forster offers emotional and psychological support as well as practical, actionable advice to those who care for a senior. This is especially valuable when the senior has dementia.
“The most important thing is to know your senior well and try to defuse the situation in a crisis.” The first step, according to Zimmer-Forster, is to look closely at the person and her individual situation. Consider her medical history and medications, her diet and hydration. “There are also grief and loss issues, family situations and cultural challenges. The person may be depressed or confused. You have to be a detective, and you can’t have a timeline.”
Jane Priest is program and services manager for the Alzheimer’s Association National Capital Chapter. She encourages caregivers, people with Alzheimer’s and other dementias and their families to call the association’s free helpline 24/7 and to explore their nationally acclaimed website, alz.org. The association offers information and support throughout the disease process and resources in 200 languages.
Alzheimer’s Association hosts free education programs to help caregivers plan for the future and better communicate with their loved ones. People in the early stages of disease and their care partners gather together for dinner, picnics and movies at the association’s Memory Café. “We focus on having fun, and the care-partner always comes to make sure everything goes well,” explains Priest. “Just because you receive a diagnosis of Alzheimer’s does not mean your life is over at that moment. There are years to enjoy, to live the best you can, for as long as you can. Education creates wisdom.”
Photo courtesy of Ingo Bartussek/Adobe Stock
What Happens in a Support Group
The Alzheimer’s Association takes the lead in organizing support groups for caregivers of people with dementia, but you can also find support groups inside adult day health care programs, senior living facilities and local libraries. “It’s a sacred hour to bring caregivers together for peer-to-peer support, [to] share meaningful times, helpful tips, relax and have a break,” Priest says. Usually led by a former caregiver, the facilitator focuses on teaching coping techniques. “Our volunteer leaders are people who want to help others learn, grow and thrive. They provide materials for the group, educational opportunities and a place to bond. A lot of folks have said, ‘I couldn’t have made it without my support group.’”
Support groups are often organized by diagnosis, so there are stroke, diabetes and Parkinson’s groups. Some meetings are held on weekends, others on weekdays or evenings. Mary Krenie, the volunteer facilitator of the Caregivers Group in Manassas, says: “I see more women, but plenty of men are caregivers, too. They tend to get more overwhelmed. It’s a natural thing. They think they can take care of their spouse. Maybe they’ve been married for 50 or 60 years, but it wears on them.” Krenie sees that caregivers seem better off after they attend a support group. “The other members of the group have helped them.”
Katz recommends caregivers keep a journal to write down what their loved one is going through. “Keeping track of everything helps your health care provider identify changes and patterns.” Nearly every caregiver worries they haven’t fully done their job, but Katz reassures them that they have. Sometimes caregivers put their loved one’s needs before their own, and the care receiver doesn’t remember. “They don’t know who you are. They don’t know everything you’re doing for them,” says Katz. “On some level they do know, and more importantly, you know.”
Patti Schneider and her husband live at Falcon’s Landing. Recently her husband moved to an assisted living unit for people with Alzheimer’s, but Schneider still cares for him daily. The energetic 93-year-old says caregivers need an outlet. “We need to share our sorrow, our hope, our joy,” she says. “We need to know we aren’t alone.” Schneider started an in-house support group for friends caring for a loved one with a debilitating disease. “We meet in solitude, sharing our emotions. Maybe we all have different situations, but something we hear makes us feel better.”
Krenie says the hardest time for caregivers is when the combative behavior starts and you become the bad guy telling the person to eat and take medicine. Then fears about being in public often set in, making you both further isolated. Your loved one may even stop recognizing you.
At this point, the cost and effort intensifies because the person may not be able to bathe, dress or feed himself. He might not want strangers in the home. In those circumstances, Krenie says a caregiver should seek respite care. Unfortunately, the Virginia Lifespan Respite Voucher Program is temporarily out of funding, but it is still worthwhile to reach out to your jurisdiction’s aging organization for referrals and assistance. Check out the Virginia Family Caregiver Solution Center on VirginiaNavigator.com.
The Rewards and Challenges of Being a Caregiver
Caregiving is one of the greatest challenges that people face in their lifetimes. According to Adm. Steve Rochon, who served under Presidents Bush and Obama as the White House’s chief usher, caring for his mother requires a daily dose of strength and understanding. “It’s right in front of us everyday,” he says. “I’m always trying to remember she can’t help the disease she has. We sit at the dinner table listening to the constant repetition of the same thing. You have to take a deep breath because she doesn’t know she asked you that question 10 times before. It’s really tough at times, but at night when you finally put her to bed, she looks up at you and says, ‘Steve, I have to tell you something. I thank the Lord every day for you and Shirley.’ It makes me want to deal with it.”
Both seniors and caregivers sometimes feel uncomfortable about receiving services, but organizations like SSA encourage them to accept help. “Allowing us to grocery shop means you’re making it easier for those who care about you. You’re helping a loved one who’s trying to do it all,” says Anderson of SSA. For those caregivers out there trying to do it all alone, Zimmer-Forster offers sage advice: “Get out of isolation. Share tips and ideas. It’s time to take care of yourself and find respite now and then.”
Photo courtesy of Barabas Attila/Adobe Stock
Support Services
Alexandria Office of Aging and Adult Services
The office offers caregiver resources, connects people with employment and volunteer services, provides assistance with information on housing and finances, helps to unravel Medicare and Medicaid and works in tandem with Senior Services of Alexandria to provide transportation, meals and social activities for seniors and adults with disabilities.
Alzheimer’s Association National Capital Area Chapter
The region’s primary support network and information resource for Alzheimer’s disease and related disorders has programs and services to help individuals, families and caregivers from the first signs of memory loss through diagnosis and throughout the disease’s progression, including a free 24/7 helpline, comprehensive online resources, support groups, free educational workshops, programs for people with dementia, professional training, safety services, clinical trial matching services and more.
Arlington Aging and Disability Services
This agency emphasizes aging in place through care coordination, home care and supportive services. The customer service center will connect seniors with affordable housing counseling, emergency crisis support, adult day programs, in-home nursing, nutrition programs, mental health support and short-term case management.
Fairfax County Services for Older Adults
This countywide organization staffs the Aging, Disability and Caregiver Resources Line, intervenes in abusive situations, offers caregiver support and respite programs, conducts Meals On Wheels and counsels on health care eligibility and ElderLink care management. Their partner, the Fairfax County Health Department, operates the Adult Day Health Care Program.
Loudoun County Area Agency on Aging
This agency acts as the central point of contact for older adults (55+) and their families. The mission is to foster independence and healthy aging and to improve quality of life for older adults and their caregivers. Services include adult day respite centers, home-delivered meals and case management. They manage four senior centers across the county.
National Family Caregivers Association’s Caregiver Action Network
A resource for videos and information about caring for seniors and people with disabilities, this network offers tips for caregivers, like how to talk to your employer about caregiving, and collects stories about caregiving from the community.
Prince William County Area Agency on Aging
Seeking to provide a supportive network for older persons and their families, this organization offers educational programs, has adult day health care, some in-home assistance, legal advice, care transition advice, caregiver support groups, home-delivered meals and Bluebird Tours.
Senior Services of Alexandria
Senior Services of Alexandria operates as a nexus to connect families to services and oversees meals on wheels, grocery deliveries, Friendly Visitor program, transportation services, information and educational seminars; operates AniMeals on Wheels and the Silver Service Senior Discount Program; and coordinates communication between caregivers and residents aging in place.
Virginia Division for the Aging
VDA coordinates 25 area agencies on aging and private organizations to help seniors and caregivers find the services and information they need and also oversees programs under the state and federal government. It is also expanding the Wellness Program for seniors with chronic diseases called “You Can! Live Well, Virginia!”
VirginiaNavigator
This site is a clearinghouse of information for seniors and caregivers. Facilitated by the state of Virginia, it offers practical information on common issues faced by aging adults and their loved ones including housing, legal services, financial planning, health insurance and medical issues.
(February 2017)