Linda is one of 43.5 million adult caregivers in the United States who provide unpaid care to other adults, age 18 and older. Often referred to as “informal” or “family" caregivers, they are mostly women (61 percent) and, when compared with men, provide more hours of care that is very personal and physically demanding. RELATED: The United States of Stress: You’ll Never Think About Stress the Same Way Again The typical caregiver is currently a 49-year-old woman. Linda, for example, was 48 when she began tending to the needs of her middle-aged husband, David, whose heart attack had left him incontinent, bedridden, severely brain damaged, and in need of total care. But the face of caregiving is changing. Millennials — those born between 1981 and 1996 — already constitute 24 percent of the U.S. caregiving population and, like their boomer “sandwich” generation forebears, are having to choose between caring for parents (and often grandparents) and caring for themselves as they start families, buy homes, and launch their own careers. Millennials’ growing presence among caregivers — and the reality that they’ll be tending to others’ needs for longer periods of time — is giving new urgency to the lack of skills and resources to protect the health and well-being of caregivers from the ravages of toxic chronic stress. Long-term, chronic stress, as often experienced by caregivers, negatively affects emotional and mental health, leading to higher levels of depression, anxiety, frustration, anger, and guilt. Caregivers report much higher levels of stress than people who are not caregivers. Those who care for patients with dementia report even higher levels of overwhelming emotions and depression. “What is the biggest cause of your stress and how does it affect you?” That was the question posed by Bob Harrison, the administrator of the closed online support group the Caregiver Space to its 3,600 members around the world. Bob, himself a caregiver for his wife of 39 years, reports that hundreds of responses came pouring in.
“Traveling back and forth three hours and being terrified something will happen when I am not there.““Loneliness, isolation, being trapped, absolutely no help, pulled muscles, torn joints, etc.““Doing it all 24/7 as other family members live out of state.““People who won’t help but are ready to tell you what and how to do things.““I can’t turn my brain off. My daughter is 33 years old and in a wheelchair and attends an adult day program. I have been her caregiver for 33 years. If I vacuum I hold onto my cell phone.”
Is it any wonder that caregivers often exhibit unremittingly high-levels of stress response hormones and chemicals? These don’t necessarily cause a chronic condition directly, but they can increase the risk for heart disease, cancer, arthritis, acid reflux, and headaches. Then there’s the body pain that results from having to lift and maneuver loved ones who can’t walk or, sometimes, even shift their own weight. When I asked caregivers if they thought all the years of doing this work had affected their physical health, Linda responded: “There are only two health issues I’m dealing with. I don’t really think they were caused by the stress of my years as a caregiver, but who knows. I was diagnosed with a brain tumor last July. We are so thankful that it’s not cancerous. They are doing yearly MRIs to make sure it’s not growing. And I was diagnosed with diverticulitis this July. I’m heading to the surgeon this morning for more tests because I’ve had three attacks in the past five months.” Bob recounted that while he was caring for his wife, whose cancer had spread to her bones, he had no physical problems: “Not even a sniffle. But after she died, the stress began to take its toll. I had two major bouts of inflamed lungs, gastritis with anemia, shingles, heart trouble requiring meds for the rest of my life, pneumonia five times, influenza, and now a significant prostate cancer. My immune system went on the fritz from all the stress of caregiving. It was very intense.”
The Fraying of Personal Finances
According to a study by the National Alliance for Caregiving and AARP, titled Caregiving in the U.S. 2015, of the 59 percent of caregivers working full- or part-time, many have had to alter their work schedules because of caregiving obligations. Some have lost their jobs trying to juggle both. Linda was candid about her family’s situation: “We struggled but we never went without. I know without a doubt that it was and is our faith that carried us through. Modern day miracles are the only way to describe it. No matter what we needed, without anyone knowing, we would get a phone call from someone wanting to donate what was needed, like diapers or food. Or a card, with a check enclosed, would be in the mail from someone we didn’t even know. Even a lady who lived in Japan, whose Sunday school class learned about our family, began having diapers and bed pads shipped to us and did so for several years.” A 2018 AARP Public Policy Institute paper notes that the Family and Medical Leave Act (FMLA) provides up to 12 weeks of unpaid job-protected leave for the care of a child, spouse, or parent. But only 60 percent of the workforce is eligible for this coverage, the paper’s authors say, concluding that for family caregivers “taking unpaid leave for caregiving demands or reducing work hours can result in financial harm that can affect them for the rest of their lives.”
Interventions
The Family Caregiver Alliance, a long-standing San Francisco–based advocacy and resource nonprofit, says that the well-being of caregivers “requires more focused attention from health professionals, policy makers, and caregivers themselves to ensure the health and safety of those individuals dedicating their lives to the care of others.” I have worked with patients and their caregivers for more than 36 years. Caregivers are called upon to undertake a long journey across unfamiliar terrain without a compass or known destination. I have seen them experience escalating fear and loss of control as they try to find their way. The key, I have learned, is to break down life into small pieces that can be brought under control and handled. My work focuses on using organizing techniques to do just that.
Organize the Team
No one has to go this alone. One focus of my book, Age in Place: A Guide to Modifying, Organizing, and Decluttering Mom and Dad’s Home, is on family members’ organizing their efforts to help their care recipients. Start by forming as large a network of helpers as possible. Most people naturally turn to their immediate family members. If there are no geographically close family members, or family dysfunction precludes receiving help from them, there are other options. Your care recipient may be able to identify potential helpers from his or her own group of friends, neighbors, or faith community. Many tasks can be accomplished remotely via the internet or telephone, enabling those who live at a distance to be an active part of the team. Examples include managing bank accounts, paying bills, scheduling doctors’ appointments, coordinating meal deliveries, and managing home maintenance tasks. If you’ve exhausted all potential volunteers and need additional support, consider hiring a professional geriatric care manager who can arrange and monitor care. Private-hire home health aides can also assist with activities of daily living and supervision. Paying for help can be difficult. Understand your care recipient’s health insurance coverage plan and educate yourself about Medicare, Medicaid, and any nearby volunteer programs. Contact your local senior services center and your local or state Office on Aging to learn about the resources available to you. Some states offer in-home nonmedical services on a cost-sharing, sliding-scale basis. If you have long-term care insurance, paying for aides can be accomplished through that coverage.
Organize a Plan
Create a list of needs required by your loved one (such as home maintenance, healthcare, transportation, personal care) and assign a team member to be responsible for each need. Keep in mind this is a fluid plan.
Organize Communications
Set up a “command central” in the home where it is easily viewable. On a desk, table, or wall, set up a large dry erase calendar board to note all the activities of the day, upcoming appointments, and the names and contact information of the team players, including doctors. Provide a communication notebook for caregivers to write brief daily synopses of their activity so that anyone, at-a-glance, can remain updated. Create a “Health Care Notebook” with pertinent information such as a current medications list.
Other Tips for Coping With Caregiving
Learn about your loved one’s disease or condition; a basic understanding can empower you to ask the right questions and be a better advocate.Assistance is available from many organizations and agencies. Make sure to ask at your local Office on Aging, church or synagogue, senior services center (they often lend out medical equipment), and community caregiving groups.Your local or state Office on Aging can direct you to programs that provide state and federal assistance that helps with home heating bills, for example, groceries, and home aide services or helps provide these services at greatly reduced rates.Heidi Hanna, PhD, the executive director of the American Institute of Stress, has worked with caregivers using humor as a stress buster. “Humor can be a very effective stress reducing strategy for caregivers, amid circumstances that are anything but funny,” Dr. Hanna says. She recommends getting a humor buddy with whom you can share something funny each morning. Sending and receiving humorous messages, images, and videos can enhance your humor appreciation and your ability to cope.Keep up your own health so you can successfully care for others. Get regular checkups, maintain a healthy diet, and exercise regularly.Dementia Challenger and The Alzheimer Spouse are websites that provide excellent practical tips for those caring for family members with these debilitating conditions.Find a support group. There are many online options if you cannot leave your care recipient. Consider joining the Caregiver Space. There are also many Facebook groups devoted to different types of caregiving.Use your computer or mobile devices to schedule appointments, receive alerts on when to give medications, maintain health histories and organize pertinent medical information. Search for caregiving apps — two good ones are CareZone and Caring Village.Research overnight or day-care offerings to give yourself a break. Complete the paperwork ahead of time, even if you don’t plan to use them right away.Speak with your employer and educate yourself about your options for family leave.Some examples of the best stress reducers from members of the Caregiver Space included: Venting to this group, music, gardening, exercise, driving with the radio blasting, and, surpassingly, prayer. Indeed, the Caregiving in the U.S. report notes that 70 percent of caregivers said that praying helps them cope.The American Journal of Nursing study found that “when caregiving demands become more intense and result in high levels of distress and depression, caregivers often cite positive aspects of the experience. They report that caregiving makes them feel good about themselves, as if they are needed; gives meaning to their lives; enables them to learn new skills, and strengthens their relationships with others.”
Linda Byce, for example, is helping other caregivers full-time. “When I look back at all the things that we went through and then all the amazing things that happened, I am in awe,” she says. “I feel blessed to have traveled this journey. I know it was my 11 years of training that I will use to help those who are and who will walk this same path.” Bob Harrison, the Caregiver Ambassador at the Caregiver Space, is also committed to guiding other caregivers — particularly as they struggle with chronic stress. Who better, he says, to advise people overwhelmed by the challenges of caregiving than someone who has been there already. Caregivers are experienced and knowledgeable, which is why their support and advice always benefits someone else who needs help, he explains. “And that’s how we make a change,” he says, “through one person at a time.”
