Practice Self-Care: What We Know about Family Caregivers and Caregiving

We all know about the 18 million professional caregivers who are part of the “paid” healthcare workforce: doctors, nurses, nursing assistants, companions, to name a few. But do you know there are over 53 million Americans providing “free” care for family members or friends, roughly one-third of all adults and all households in the US?

Although often very meaningful and gratifying, caring for others is not easy. Family caregivers face a litany of challenges: physical demands, financial pressures, emotional ups and downs, a myriad of changes in roles and responsibilities, unfamiliar clinical patient care duties, and worries about a loved one’s welfare, 24/7.

Over time, caregiving can take a toll on body and mind, heart and soul; on personal finances, family relationships and work life. It can erode the immune system and increase susceptibility to disease, depression or hospitalization. 20 to 30% of family caregivers suffer from mood disturbances and use prescription drugs for depression, anxiety, and insomnia two to three times as often as the general population.

What do we know about family caregivers? They are women and men who care for a loved one who is ill, disabled, elderly or a special-needs child. They are people of any age, race or sex; of any financial, religious, employment or socio-economic group. In fact, there is not a family in America that isn’t impacted by caregiving, at one time or another. In the words of former First Lady, Rosalynn Carter, “There are only four kinds of people in the world: those who have been caregivers, those who currently are caregivers, those who will be caregivers and those who will need caregivers.” Caregiving is a universal experience.

Within this universal experience there are six characteristics of caregiving that every caregiver will encounter.

Stories

There is another well-known saying, “When you’ve seen one caregiver, you’ve seen one caregiver.” While caregiving touches everyone’s life, caregiving is an individual experience. All caregivers have a personal story that is uniquely their own. Who is the care receiver and what is their relationship to the caregiver? What is their condition and its prognosis? What is the nature of care required and how does this impact the caregiver’s personal and work life? No two stories are alike but there are universal components to those stories, as described by these six characteristics listed here. Also, like any other story, caregiving stories have a beginning, middle, and end; caregivers journey through the story. Caregiving stories evolve over time. Characters change and often grow as the story progresses. There can be moments of high drama and periods of dullness or even boredom.

Stressors

Stressors are the demands of life that cause stress. There are two types of stressors that all caregivers encounter. First, there are the caregiving tasks that must be done. Second, are personal caregiving challenges. These are individually felt, often deep, and powerful internal feelings that caregivers experience. Though invisible to others, challenges like these can cause a great deal of stress for caregivers.

The Toll

On average, the caregiving journey lasts 4.6 years. It exposes caregivers to varying degrees of chronic stress which can erode a caregiver’s health, well-being, and capacity to care. The toll varies from person to person, but everyone who gives care will be impacted by the experience.

Needs

It is not only the care receiver who has needs. Every caregiver has their own needs which must be met as they journey through caregiving. There are three types of needs every caregiver experiences, but like their story, they will have uniquely personal manifestations of these three needs: A) Practical, problem-solving help; B) Positive personal energy; and C) Partners in providing care.

Self-Care

Not a nicety, self-care is a necessity for preserving a caregiver’s well-being and capacity to care. It’s important that caregivers admit their need for self-care; permit themselves the time for self-care; and commit to regularly practicing healthy self-care. This includes healthy practices that nurture the body, mind, and emotions; anything spiritual, social, or fun-loving that connects them with others Healthy self-care practices are tailored to each caregiver’s preferences; whatever healthy behavior brings them joy, relaxation, calm, or peace.

It’s a Relay

Because caregiving journeys are often long and challenging, they are too big to handle alone. Envisioning a race, caregiving is not a sprint that is quickly finished. It’s not a marathon that is run using the energy of one person. Caregiving is a relay, a race with multiple heats run by different runners who take the baton from one who ran one leg of the race and turns over the baton to the next runner. In order to “go the distance” caregivers need care partners to help them.

In the following sections of this site, you’ll find evidence-based information, activities, and advice on how to stay well all along the caregiving journey. These proven and practical self-care practices are not difficult. Use the questionnaires, stories, text, and activities to discover ways to care for yourself as you care for others. It will be good for you and for the one in your care.