Imagine that you show up to work day in and day out, seven days a week, 365 days a year, and yet you never receive a dime of compensation. While this seems unreasonable, it’s the reality for many Americans who perform the invaluable role of caregiving to a spouse, parent, child, family member, friend or neighbor.
According to the Family Caregiver Alliance, 43.5 million caregivers provided unpaid care to a child or adult (2015), with 15.7 million of those providing care for someone with Alzheimer’s disease or other dementia. This care has an estimated economic value of $470 billion (2013) and is provided by a female three times out of four. Family caregivers spend around 25 hours per week providing care, and close to one in four provides more than 40 hours a week.
Kathryn MacDonell, the geriatric program manager at Texas Health Dallas, says that while caregiving is often performed by family members, it can be a lot more complicated than we’d think.
“A big assumption is that caregiving is a natural and expected part of family responsibilities,” she explains. “Some people in a family who should help, won’t. Caregiving is not easy, and not everyone has the capacity or desire to take on the role of caregiver. Typically, the role falls to one member in a family, often a woman, but it’s best to share the responsibilities of medical appointments, communication with doctors, overseeing finances and managing daily activities.”
Caregiving, while a necessary and daily part of millions of Americans’ lives, is often time consuming and may negatively affect the caregiver’s sense of control of his or her own life. In a report published in Outcomes and Insights in Health Management, unpaid caregivers report a 27.2 percent reduction in productivity in their daily lives, an effect that is felt three times more often in their personal lives than in their professional lives.
“Caregivers often put their loved one first and neglect their physical, mental and emotional well-being,” MacDonell says. “By not taking care of themselves, they put their own health at risk. Respite care is a temporary and often much-needed rest from the demands of caregiving.
“There are many resources to help families, such as Texas Health’s Community Connect, which provides assistance with food, goods, housing, transit, legal and financial support. There are also disease-specific groups that offer caregiver education and support groups to create a circle of caregivers who live a common experience.”
Elder Options of Texas reports that 3.4 million Texans provide 3.1 billion hours of annual care, with an estimated worth of $35 billion. While this is admirable, it’s not easy. Around 55 percent of family caregivers say they’re overwhelmed with the amount of care required, and 38 percent report financial strain due to providing care.
Jessica Ngo, M.D., an internal medicine physician on the medical staff at Texas Health Dallas and Texas Health Internal Medicine, a Texas Health Physicians Group practice, says when a caregiver feels overwhelmed, it can negatively affect his or her own health and eventually overflow onto the care recipient.
“Many times, caregivers concern themselves so much with taking care of their loved one that they forget to take care of themselves,” she says. “Feelings of hopelessness, depression and fatigue can happen insidiously. While caring for a loved one can be fulfilling, it can also be very frustrating and difficult. Caregivers need to be aware of feelings of frustration and resentment — and be very careful not to take their anger out on the person being cared for or other loved ones. It is important to recognize when your attitude changes from loving and caring to hostile and resentful.”
While a family member may only need care for a short period due to an accident or injury, there are other times a person will need increasing levels of care due to age, medical conditions or diseases. It’s important for the care recipient, family members and other involved parties to have honest conversations about what they would like to happen, but also what is possible.
“Sometimes caretakers have unreasonable expectations — either for themselves or for their loved one,” Ngo says. “Many illnesses, such as Alzheimer’s, are progressive illnesses and despite your best efforts, your loved one’s illness will worsen. It is important for caretakers to understand that as the illness progresses, their loved one’s needs will increase.
“As many illnesses progress, patients will require more help with basic skills such as feeding, bathing and toileting. Having nursing services or placing a loved one in an assisted or skilled nursing environment is not abandonment. Many times, it is the safest option not just for patients, but also for caregivers.”
MacDonell says that while it can be difficult, caregivers should be realistic about what they can and can’t do.
“Denial of the changes that occur as a disease progresses is common,” she explains. “Accepting the changes and realizing that you are doing the best you can is important, but the demands of the care can be too much. Sometimes, loved ones need care beyond what caregivers can mentally and physically give. Don’t feel guilty or be afraid to ask for and accept help. Home care and residential care can make the health changes easier to manage.”
It’s crucial for caregivers to look after themselves so they don’t get run down mentally and physically. Self-evaluation and regular checkups will help ensure they can both stay healthy for their own well-being and provide the best care possible.
“One of the most difficult parts of being a caretaker is the ambiguity and ambivalence that come with caretaking,” Ngo explains. “For example, a caretaker may simultaneously wish that their loved would get well and wish that it would be over. For those caring for loved ones with dementia, another example is mourning the loss of a loved one even while they are still living. It is important for caretakers to identify their loss. By putting into words these ambiguous feelings and thoughts, it validates their feelings and helps them move past feelings of guilt or hopelessness.”
MacDonell echoes the idea that while caregiving can be difficult, self-care is critical.
“A regular checkup with your doctor for stress levels is important,” MacDonell recommends. “If you aren’t healthy, you can’t take care of your loved one. Pay attention to any exhaustion, stress, sleeplessness or changes in appetite or behavior that you may experience. Ignoring these symptoms can cause your physical and mental health to decline. Relaxation, meditation, exercise, solid sleep and proper diet are ways to build your strength as a caregiver. Aim to enjoy your own life as much as possible while caregiving.”
MacDonell offers a Memory Care Support Group from 11 a.m. to 12:30 p.m. on the fourth Thursday of the month at Texas Health Dallas.
Ngo recommends the organization Visiting Angels for respite care.