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How to Prepare, Plan, and Be Present \ Caregiving \ What is Caregiving?

What is Caregiving?

Sooner or later most people will be caregivers. Over 53 million people were providing unpaid care in the US in 2020, according to AARP. Many never imagined themselves in that role—it just sort of happened. For some, it was an accident or a serious illness in someone who matters, for others it was a gradual decline in such a person. For some, that person is a partner, others a parent, others a friend, or even a friend of a friend. Help is wanted (or needed) and people step up.

CaringInfo can guide you to resources not only to help you help another, but also to help yourself.

Overview of Caregiving

The Caregiver Action Network describes four basic types of caregivers, which often overlap.

  • Crisis caregivers: Those thrust suddenly into the role by acute illness or emergency.
  • Long-term caregivers: Taking care of someone with a chronic illness or dementia, for example.
  • Long-distance caregivers: Those daughters, sons and others who live far away yet both feel and are responsible for care
  • Sandwiched caregivers: Those who have other full-time obligations such as a demanding job or young children, so are especially pressed for time.

One role can and often does turn into another over time. 

Caregiving involves intertwined activities:

  • Direct caring for a person, including physical care, emotional care (for example listening, talking, giving reassurance), and service to help meet physical and emotional needs such as shopping for food or driving to doctors’ appointments.
  • Maintaining the immediate physical environment in which the person lives—washing sheets, cleaning, yard work, paying bills and taxes.
  • Nurturing the person’s connections and relationships—communicating with family and friends, inviting people over, and facilitating phone calls.
  • Administrative caregiving—all the hours spent (on hold and otherwise) dealing with insurance companies, healthcare systems, and doctors’ offices.
  • Selfcare, not usually included on lists of caregiving activities, but in many ways enabling the others.

The Rings of Caregiving

There are often rings of caregivers with the patient in the center, family/inner circle next and successive rings supporting the one(s) next closest to the patient. Take a moment to think about where you fit and know that everyone is important.

A diagram showing a network of caregiving. On the right is a circle with the word patient in the middle and going out from there is Family & Inner Circle, Friends, and then Community & Support Groups. Each ring is a gradient of purple. Arrows traverse the rings pointing at the Patient. On the bottom left is a label that says Doctors & Other Providers with lines pointing at Patient and Family & Inner Circle.

Caregiving can be exhausting, frustrating, and just plain difficult. You may also discover a deep sense of satisfaction, unexpected joys, shared humor, and moments of lovely intimacy. It all coexists.

Getting Started as a Caregiver

Here are some simple, practical suggestions to get started:

  • Take some time to listen to the person you are caring for and to the doctors.  Understand, as best you can, what is being asked of you and how you can respond. It is helpful to reassess from time to time as situations change.
  • Listen to yourself and reach out for support and information. There are online and in person support groups for most situations—it can help a lot to speak to others going through the same thing. They will both give support and share wisdom.
  • Get organized. The number of things that need done can seem completely overwhelming—a list can help make it all manageable. Think about who can help with what. Is someone very good with finances, or fighting with insurance companies, or food shopping and cooking? 
  • Learn about all the resources that can help. The web is rich with information, we will direct you to some useful sites.

Preparing yourself and being organized will help you with the transition to becoming a caregiver.

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CaringInfo, a program of the National Hospice and Palliative Care Organization, provides free resources to educate and empower patients and caregivers to make decisions about serious illness and end-of-life care and services. CaringInfo’s goal is that all people are making informed decisions about their care.  Learn more about CaringInfo.

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