Former First Lady Rosalynn Carter observed on the founding of The Rosalynn Carter Institute of Caregiving: “there are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will become caregivers and those who will need caregivers.”
The duration of care given may be measured by days, weeks, months or years. The hours can be long or short, the pay low to nil. In sickness, a patient’s behavior may mirror the positive attributes of their personality, or their illness may make them combative, demanding, and difficult to care for.
Caregiving can be thankless or rewarding. For some, the task is a cherished opportunity to spend quality time tending to the needs of a beloved relative or friend. While others become caregivers under less charitable circumstances, by default or attrition. Either no one else is willing and able to provide care, or the current caregiver passes away.
For first-time caregivers, the learning curve will be steep, immediately requiring mastery of several new skill sets including, navigating the health care financial system on behalf of the patient, making informed treatment decisions, administering medications, monitoring and addressing changes in health status and attending daily to a host of personal care needs such as preparing meals, brushing teeth, bathing, clothing and managing the unpleasantness of incontinence.
According to a report by the National Alliance for Caregiving (NAC) and AARP, in the United States, “there are an estimated 53 million caregivers providing care to adults and children with special needs or disabilities, or to older adults. This represents about 21% of the adult population.”
Being a caregiver can have a significant impact on a person’s life, both positive and negative. The NAC offers five impacts that caregivers may experience:
Emotional stress: Caregiving can be emotionally demanding, and many caregivers report feeling stressed, overwhelmed, or anxious. They may also experience feelings of guilt, sadness, or frustration.
Physical strain: Caregiving can also take a toll on a person’s physical health. Caregivers may experience fatigue, sleep disturbances, and an increased risk of developing chronic health conditions.
Financial strain: Caregiving can be expensive, and caregivers may have to pay for medical equipment, medications, or home modifications. Additionally, caregivers may have to take time off work or reduce their working hours to provide care, which can impact their income.
Social isolation: Caregiving can be a time-consuming and isolating role. Caregivers may have limited time for social activities or may find it difficult to participate in activities they enjoyed before becoming a caregiver.
Positive impact: While caregiving can be challenging, it can also have positive impacts on a person’s life. Caregivers may feel a sense of purpose or fulfillment from providing care, and may develop stronger relationships with the person they are caring for. Additionally, caregivers may develop new skills or gain a deeper understanding of healthcare and medical needs.
“Sometimes a person becomes a caregiver overnight after a health crisis, like a stroke or cancer diagnosis. But often, caregiving starts slowly with a few errands like picking up groceries,” Amy Goyer, author and caregiving expert for AARP. “While you may not call yourself a caregiver, at some point it becomes clear that life has changed, and you don’t have the freedom to go on vacation or out with friends unless someone else can step into your caregiving role.
“If we acknowledge that we’re caregivers, we’re much more apt to get resources, support and services that can help us in that role and help the loved ones we’re caring for,” said Goyer, author of “Juggling Life, Work and Caregiving,”
In her book she offers five personal strategies to guide caregivers through challenging times:
Let the patient lead. Autonomy is important for the one receiving care. Include the person in care decisions whenever possible. Make sure doctors don’t talk as if the patient isn’t in the room.
Focus on comfort. Let comfort, joy and pleasure be your guideposts. Try not to nag. Don’t forget the importance of small moments of shared joy — listening to swing music or a favorite crooner, playing card games.
Listen to the experts. Find experts to advise you and listen to them. Arm yourself with information from caregiving organizations and support groups. Trust your instincts.
Talk to other caregivers. Support groups will be one of your best resources.
Take care of yourself. Even five- and 10-minute breaks during the day can help. Try keeping a gratitude journal, download a meditation app or do a six-minute workout to refresh your mind and body. Use adult day care or in-home caregivers from time to time so you can take a break. Take up friends on their offers to help, even if it’s just to get your hair done. Exercising, sleeping and eating well will make you a better caregiver for your loved one.