Senior living is changing. That, in turn, is shaping the ways family caregivers support their loved ones as they age.
By Sarah Markel
The nature of what it means to be old in America is shifting rapidly. There are more seniors than ever before and their numbers are growing. Every day, 10,000 people turn 65. In fact, the U.S. Census predicts that by 2030, 82 million Americans will be 65 years of age or older.
These seniors are more educated, more active and generally healthier than previous generations. This is especially true in Northern Virginia. Each of the region’s counties now boasts life expectancies for both men and women that are at or above the national average.
That is good news for children who will grow up knowing their great-grandparents. It means more time for families to gather around the holiday table and more time for seniors to enjoy their hard-earned retirement. But greater longevity comes with challenges for the adult children who will eventually become caregivers to this greying population.
Aging in Place (With Help)
Gone are the days when nursing homes and assisted living facilities were the first choice for aging relatives. “Our research has shown time and again that people want to age at home rather than in an institution,” says Ginger Thompson, communications director for AARP Virginia.
For most retirees, the home represents their nest egg. Many people choose their homes with an eye toward aging in them. Finally, Thompson says, “It’s the place where they feel most comfortable.”
About half of American women over age 75 live alone. Mary Downs’ mother, Rose, who lives in Fairfax, is one of them. A former elementary school teacher, Rose, 85, takes no medication, attends a weekly exercise class and is still active in her church.
Recently, her daughter reports, she reluctantly gave up her car keys and agreed to wear a Life Alert necklace. Otherwise, she has no intention of giving into old age or moving into an institution.
Downs and her sister are helping make this possible. They take turns driving Rose to the Dollar Store and the beauty salon on Thursdays. They inventory her fridge to ensure she is eating regularly. They keep tabs on Rose’s lawn service. They have even intervened when their mother became a victim of home improvement fraud, a crime to which the elderly are particularly vulnerable, reports the FBI. (Because of the high prevalence of scams targeting the elderly, some names have been changed to protect the identity of individuals in this story.)
Yet even with the support she is able to give, Downs, 51, wonders how much longer her mother can live independently. She worries that her mother’s memory lapses may soon make living alone unsafe. “If you were to look at it from the outside she is doing great,” Downs admits. “But when you look closely the cracks start to show.”
Unfortunately, there are not many options for people like Rose. Even though her savings are modest, she would have to spend down all of her assets to eventually qualify for Medicaid funded long-term care. Even if she were interested in assisted living, the cost is prohibitive. In 2012, Met Life reported that the average base rate for assisted living in the Washington area is $5,933 a month, one of the highest in the nation.
Plus there are not enough facilities to go around. According to the U.S. Census, half of NoVA’s 200,000 people over age 65 live in Fairfax County. But there are currently only 10,000 licensed nursing and assisted living beds available in the county. Meanwhile, AARP reports that statewide, there are 64,000 licensed beds. This is for a population of more than a million seniors.
For now, Downs explains, the plan is to help her mother stay in her home even if that means eventually hiring a concierge service to provide additional layers of help.
“Nursing care and assisted living are usually the last choice,” Northern Virginia Long-Term Care Ombudsman Laura Nichols says. Alexandria, Arlington, Loudoun and Fairfax pool their federal resources to fund the Ombudsman program, which offers free long-term care consulting to families. They also advocate for residents of long-term care facilities and resolve complaints.
Intergenerational Living as Plan B
When aging in place is not an option, many families are turning to intergenerational living. For Lynne Celia, moving her father, Mike Celia, into her Falls Church home was the only choice when dementia became evident a year and a half ago.
Mr. Celia, 78, is one of the estimated 80,000 people in the Washington area living with Alzheimer’s disease and dementia. He is physically healthy, but he cannot be left unattended. He leaves taps running, opens the front door in the night and needs to be reminded to bathe and eat. Caring for him is a full-time job even though his disease is still in the early stages.
Because Mr. Celia does not yet qualify for subsidized full-time care, Ms. Celia, 51, turned to ElderLink for help cobbling together a care plan that lets her balance her roles as breadwinner, mother and caregiver.
ElderLink, a partnership between Fairfax County, the Inova Health System and the Alzheimer’s Association, provides affordable care management to families in NoVA. This service is available to Fairfax County residents for a nominal fee. Residents of other jurisdictions pay on a sliding scale.
Catherine Cole, director of ElderLink, explains that navigating the system of services and programs for the elderly is difficult for families because of varied funding sources, eligibility requirements and the private pay system. She recommends that when families have questions they start by calling their local Aging, Disability and Caregiver Resource line.
Mr. Celia now attends a senior health center, which he pays for, five days a week. Fees are calculated based on income. He rides a county subsidized bus to and from the center. “I think in this area we are fortunate,” Ms. Celia says. “I never dreamed my father would have a bus that picks him up from our door and takes him to a center.”
Ms. Celia also qualified for six hours a month of respite care. During this time, a volunteer comes to visit with Mr. Celia. “They get in tune with my dad, play games, sit with him.” She uses those hours to get her hair cut and spend time alone with her five-year-old son.
Except for the workday and those six hours a month of respite care, Ms. Celia’s father is always with her. While dementia has turned a formerly complex man into an easy-going person, it has also changed the nature of her relationship with her dad: “I am not his daughter anymore. I am his caregiver.”
Ms. Celia, formerly an IT consultant, is now a certified financial planner with New York Life. Among other things, she sells long-term care insurance. “Had this been my first career, both my mother and father would have had long-term care insurance,” she says.
While she admits that long-term care insurance is not for everyone, she insists that it should be one of the things families consider when they make a long-term care plan.
Ms. Celia intends to care for her father as long as she can provide a safe home for him. After that, she says she will work with the Long-Term Care Ombudsman to figure what the next steps and how to pay for them.
When Families Provide the Assisted Part of the Living
Even those seniors who can afford assisted living are increasingly choosing other options. In 2007, Mary Downs’ mother-in-law Judith, who is now 82, was involved in a car accident. That incident circuitously led to a diagnosis of Alzheimer’s disease. Judith, her son Terry Downs and Mary Downs decided together that building an extension onto the Downs’ house was the best course of action.
As Mr. Downs explained, two factors motivated the decision to bring Judith to live with them. One was ethical, the other financial. “We asked ourselves what was the most loving thing we could do for my mom,” he says. “And then we looked at the costs.”
He estimates that over six years, an initial $150,000 investment for the extension has saved his mother’s estate more than a quarter of a million dollars. Mr. Downs, an engineer by trade, built the light-filled extension. It looks and feels just like Judith’s old home, except that the doorways are wider and the thresholds are low. They even organized the perfume bottles and photos on Judith’s dresser exactly as they had always been in her old house.
Mrs. Downs took over Judith’s care. To learn more about Alzheimer’s disease, she attended workshops offered by the National Capital Area Alzheimer’s Association. She learned to store Judith’s clothes and toiletries on open shelves rather than behind closet doors where they can be forgotten. When Judith asks when she is going home, Mrs. Downs uses gentle diversion tactics. “We are trying to be respectful of her, while honoring the person she was.”.
The personal cost of this level of unpaid care is not easy to calculate. Mrs. Downs admits that while both Judith and Rose are up to date on all their medical appointments, she has not had a mammogram recently.
A national survey of caregivers conducted in 2009, found that two-thirds ranked caring for a loved one as their No. 1 source of stress. Caregiving also takes a toll on the personal finances of the caregiver. AARP estimates that when caregivers age 50 and over leave the workforce to care for a parent, they lose on average $303,880 in wages, Social Security and pension benefits. “I am very thankful to have a wife who is an angel,” Mr. Downs says.
Mrs. Downs says the experience of caregiving has brought unexpected life lessons. “I have a whole lot more empathy for people in these situations,” she acknowledges, reflecting on her six years as a caregiver in two very different circumstances. “The hardest part is not knowing what the next step on the journey will be.”