Becoming a Caregiver: A Checklist for Getting Started

Whether caregiving starts slowly or all at once, a few things organized early make a real difference. The National Institute on Aging says caregiving can feel overwhelming at the beginning, and advises tackling one task at a time. Use this as a list to work through, not a test to finish first.

What should I organize first?

Medical information. Learn about the person’s conditions. The National Institute on Aging suggests asking what treatments they get and what medicines they take, and getting their providers’ contact information. A caregiving plan from AARP’s Amy Goyer says a medication list should show each dose, how often, the prescribing doctor, the pharmacy, and how refills work.

Permission to talk with the doctors. Under the federal privacy rule, providers do not have to share information with family unless they are personal representatives, the Department of Health and Human Services says. They may share it if the patient agrees or does not object. The Institute advises getting written permission.

Insurance. Gather health insurance cards, and note Medicare or Medicaid. Medicare does not cover custodial care when it is the only care needed, according to Medicare.gov.

Legal documents. A health care proxy, a financial power of attorney, and a will, and where they are kept. Next Avenue’s step list says clear, legally binding documents let someone act for a person. See Advance Directives, Living Wills, and Health Care Proxies. If you will be handling their money, the Consumer Financial Protection Bureau says the duties include acting in their best interest, keeping their money separate from yours, and keeping good records.

Money. A general picture of accounts and bills. You do not necessarily need full access to start. See Getting Your Affairs in Order.

The Institute also offers worksheets for caregiving responsibilities, medications and supplements, and important documents and paperwork.

How do I find out what care is really needed?

Talk with the person, other family members, and their doctors. The AARP plan suggests also speaking with attorneys and financial advisors who help them, so you have a clear picture of needs, resources, plans, and wishes. Next Avenue suggests listing what you can, have time for, and are willing to do, and then listing what you need help with, now or later. Getting a realistic picture beats guessing.

How do I find out what help is available?

Start with your local Area Agency on Aging through the Eldercare Locator, 1-800-677-1116. Its National Family Caregiver Support Program offers information, help getting services, counseling, support groups, training, respite, and limited supplemental services. The Institute also advises telling the person’s doctor that you are a caregiver.

How do I build a team?

The Pennsylvania Department of Aging’s first-steps guide says caregiving is not a solo journey, and suggests listing who can help and what each person could do, such as transportation, meals, or companionship. The Institute adds that when you share tasks, consider everyone’s limits and who is best for each one. See Sharing Caregiving Responsibilities With Siblings.

Should I involve the person I am caring for?

Whenever you can. The Institute’s handbook describes caregiving as a partnership between the caregiver and the person who needs care. It notes that this may not be possible if the person needs significant help or cannot care for themselves.

Do I need to do everything first?

No. Do the most urgent thing and then the next, as the National Institute on Aging advises, and fill in the rest of the list over time.

Where should I go next?

See Becoming a Caregiver: What Changes First and Caregiver Burnout and Respite Care.

This is general guidance, not medical, legal, or financial advice. Every family’s situation is different; a doctor, social worker, or attorney can advise on yours.