We all want to be healthy, happy, and independent throughout our lives. But in the real world, there are times when we are sick, weak, or dispirited. Then we need help.

Caregivers play a vital role in helping us through those times. Our health care system also depends on family caregivers to play an essential role in taking care of the sick, aging, or disabled. But caregiving is not for the faint of heart. It requires a strong commitment, sometimes over many years, coupled with self-sacrifice, patience, and good management skills. But many caregivers also enjoy the chance to get closer to those they love, to discover strengths that lay dormant, and to gain satisfaction from giving.  

According to surveys by the National Alliance for Caregiving and the AARP, roughly one in five Americans provides unpaid care to an adult. If we had to pay for this care, it would cost over $250 billion per year. As our population ages, we face even greater demands on family, friends and paid professionals. As Jennifer Fletcher of the United Way describes the problem of increased need for caregivers, “It’s not a race issue. It’s not a socio-economic issue. It’s an everyone issue.”

Who is the backbone of this volunteer system? Though caregivers come from all backgrounds, studies reveal who is more likely to be caring for another adult. On average, caregivers are female, employed, with some college education, in their mid-forties, and caring for an aging parent. Women on average spend 17 years of their lives caring for children and 18 years caring for aging parents. However, in the last decade there has been a gradual increase in the number of men who provide care, and some families share the duties.

Help can take many forms. It may start with trips to the grocery store or doctor and assistance with paying bills. As more help is needed, caregivers find themselves making more significant and difficult decisions. Should I move my mother into my house? Should my wife and I move to assisted living together? Do we need to hire someone to take care of my father’s medical needs? How do I make sure my brain injured older brother is getting the mental stimulation he needs?

Caregivers feel many pressures: the effort of juggling work demands with day-time medical and social service appointments; the exhaustion of always satisfying another’s needs over their own; the strain of having to make difficult decisions for another adult who can no longer make those choices.

Unlike rural areas, which have few services for those needing help, the Richmond area offers diverse resources. Yet many caregivers are unaware of what is available and don’t take advantage of them. United Way has recently developed an online portal that makes it much easier to get information and help: www.unitedwayrichmond.org.

This site is especially designed for the caregiver who needs easy and quick on-line access to information. The home page links to a range of Richmond area services, from adult day care to Alzheimer’s assistance to caregiver support. It also provides information that can help new caregivers understand, manage, and plan for what they will need to do. For example, at www.caregiving101.org, visitors can take a free on-line course that provides practical information to make their role easier and more effective.

According to Jennifer Fletcher, the United Way’s on-line resource was designed to address a growing problem: “caregivers aren’t prepared for the stress that caregiving involves.” She says that people often don’t realize that they have begun taking on the role. “We are hoping to raise the awareness of people in the early stages when there’s still time to plan,” she explains, “not when they are in the center of it.”

Roughly 10% of caregivers end up reducing their employment from full to part time because of their increased responsibilities at home. But with careful planning and access to additional resources, more people will be able to handle their new roles and to manage them with greater success. For example, if caregivers can get more support from other family and friends, or can arrange in-home help or visits to adult day care, they share the work and improve the quality of care that their dependents receive.

Ready to locate resources? One place to begin is Senior Connections, The Capital Area Agency on Aging. They have an information and referral service that works to match local resources to your needs. They also offer caregiver support, insurance counseling and money management services, and more.

One organization they may refer you to is a Grace PLACE, a multi-service adult day care facility that serves an average of 225 disabled or aging people daily. Its programs help feed, socialize, and provide recreation for people with either mental disabilities (such as Alzheimers or mental retardation) or physical ones (such as being wheel-chair bound or having age-related losses).

The CEO of a Grace PLACE, Lynne Seward, knows about caring for others from two sides—as a supporter of caregivers, and as a long-distance caregiver for her own parent. Her 85 year old mother lives ninety minutes away and copes with macular degeneration, hearing loss, cancer, and a collapsed hip. Despite these problems, she is “fiercely independent” and doesn’t want to leave her own house. So Lynne and her husband “tag team” the different tasks needed to make long-distance care work: they get groceries, clean the house, manage her finances, and coordinate her medical care and transportation to appointments.

Although Lynne has spent over twenty-one years helping other caregivers, she, too, can be overwhelmed by her own caregiving responsibilities. So she can easily empathize with what other families go through. Currently she is helping her mother prepare for a hip replacement. Although she knows from the inside how hospitals and medical care work, “I have been stunned at the amount of home care that’s demanded of the family.” From coordinating eight pre-op appointments to applying betadine the night before surgery, the time demanded of family members even before a procedure takes place is astounding. Lynne believes that managed care depends on family help in order to cut costs and wonders how individuals without family support can cope.

Despite the demands that caregiving requires, Lynne has found benefits too. “I’ve had a wonderful opportunity to get closer to (my mother), to build a more intimate relationship with her,” Lynne says. “We talk about the good old days, and she’s allowed me to share that journey with her.”

Often one spouse cares for another when he or she declines from injury, illness, or aging. For Patricia Dabney, that caregiving role came on unexpectedly just two years after she married her second husband, Robert. They were a socially active couple who had gone to school together years ago, but became reacquainted in church. “He was a perfect gentleman,” Patricia says. They were heavily involved in church activities and anticipated years of travel and companionship together.

But Robert was diagnosed with bone cancer four years ago, and their lives now revolve mostly around their home. He has been intermittently bedridden, though he is currently able to venture out on short trips. He visits a Grace PLACE three days a week, where he enjoys the people, the bible study, and other activities. “Grace Place has really been an answer to my prayers,” says Patricia. She is reassured when she leaves him, knowing that he is well cared for. It gives her a chance to do the things she needs to do, such as getting her hair done or going grocery shopping. “I just love Grace Place.”

Patricia says that getting support from others is both necessary and difficult. People will help you in all sorts of ways when you first need it, but over the term of a lengthy illness, many naturally return to their own lives. The Dabney’s church, St. Peters Baptist, has continued to offer steadfast support, including weekly visits and calls from the deacon and pastor. Patricia agrees with advice that other caregivers have learned: “Try to get as much support as you possibly can.” But she also suggests that you get as organized as possible. “Get a book and document what needs to be done. I write down all his medical information, all his doctors’ appointments, and anything pertaining to his health or his bills.”

She has also grown from the experience of caring for her husband. “I’ve learned that you don’t know what you can do until it happens to you,” she says.

For Bonnie P., taking care of her parents in her home is following the ten commandments. “The bible tells us that we are to honor our father and mother,” she says, “And I get the satisfaction in giving back to them for what they gave me in my youthful days.” Her parents, who are in their eighties, moved in with her over a year ago following her mother’s gall bladder surgery. But Bonnie realized that her parents were having trouble caring for themselves even after her mother recovered from the surgery.

Her mother can do some cleaning around the house, and she helps with various chores when she has the energy. But Bonnie does the rest: she cooks, shops, drives, takes care of the bills, and helps with dressing. Her parents still have a house in rural Virginia, and they still hope to return there. But in order for that to happen, they will probably need to get some additional help in a county where resources are few.

Bonnie works full-time, so the added duties can be tough. “It’s tiresome. It’s long hours,” she says. “When they go to bed at night, that’s when I do my work.” But she does get help from a niece she is now paying to visit during the day. Her parents also go to a Friendship Café at Good Shepherd Baptist Church three days a week to “help keep them alert and active.” They get lunch and play games. They also like to sing, and on Thursdays they participate in choir rehearsals. In addition, “They grew up in the church and they enjoy doing devotion over there,” says Bonnie.

She has found that taking care of her parents “is heartaching. But there’s also joy in it.” She’s also discovered some unexpected feelings in caring for them. “It’s like with children. You want to keep them safe and you want to keep them out of harm’s way.”

Bonnie advises that those who care for others remember to take time out for themselves. “You have to get your proper rest and get away from the situation sometime,” she says. But she also thinks she is doing the right thing. “When they’re no longer with me, I can remember the times we shared, and the laughs.”