How can I create a caregiving plan?
10 Steps Every Caregiver Needs to Take
By Amy Goyer
Every caregiving situation is unique, and any caregiving situation can be unpredictable. That’s why it is critical to have a caregiving plan — a framework you can adjust as your loved ones’ needs and resources change. Use this checklist to help you develop your caregiving plan.
1. Assess your loved ones’ situation.
Talk with your loved ones; other family members; your loved ones’ doctors, attorneys, and financial advisors; and other professionals who assist them, to form a clear picture of their needs, resources, plans, and wishes. You might reach out to a professional eldercare consultant, geriatric care manager, or aging life care expert to help with the assessment, and your local area agency on aging may provide a free in-home assessment. You’ll need to understand your loved ones’:
- Resources, including financial, property, and their support network of people who can help.
- Cognitive abilities, including social interaction, ability to manage financial and legal matters, and use good judgment.
- Physical abilities, such as mobility, fine and gross motor skills, strength, balance, vision, hearing, speech/communication, etc. (some of these abilities may also be tied to cognitive abilities).
- Ability to manage personal care needs, such as bathing, toileting, incontinence, dressing, and grooming.
- Ability to manage everyday life, such as preparing and eating meals, driving (or arranging for transportation), caring for pets, caring for their home and yard, safely operating technology and home appliances/systems, managing their health care, and taking medications as directed.
- Safety at home, including their ability to navigate the home safely (including bedrooms, bathrooms, stairs, and laundry). Evaluate the home for fall risks and determine if they are safe to drive.
- Risk of isolation (e.g. lack of socialization, mental health concerns, inability to leave the home, etc.).
- Wishes for the way they want to live, where they want to live, and what (and who) is most important to their quality of life.
- Wishes for the kind of treatment they want to receive at the end of their life, as well as their funeral/burial/cremation and memorial services.
2. Compile physical and mental health/medical information.
Work with your loved ones to create:
- A written medical history that includes any surgeries, chronic health conditions, past and present acute health concerns and treatments, vaccination records, important dental, hearing, and vision information, etc.
- A current medication list with dosage, number of times per day to take it, special notes (like whether or not to take it with food), prescribing doctors, pharmacy information, frequency and method for refills, and notations about past medications (including negative reactions, side effects, or lack of efficacy). Include over-the-counter medications and supplements.
- A list of all current and past health care providers with specialty, location, and contact information (sometimes it’s helpful to know who they have seen in the past in case you need to go back to a provider).
- Health insurance information, including copies of insurance cards and contact information.
- Health care advance directives.
Keep copies of this information in a folder you can easily grab on the way to a doctor’s appointment or the hospital. Also, make electronic copies you can access on your mobile devices and computer.
3. Assess your situation.
Just as you assess your loved ones’ overall picture, it’s important to take an honest look at your own life and abilities, including your physical abilities (which can be crucial in terms of hands-on care for your loved ones while managing your own health care), and your home, family (including pets), work, and other responsibilities. This helps you form realistic expectations for yourself. Be clear about your boundaries to help manage expectations.
4. Determine your role(s).
Once you have assessed your loved ones’ and your situations, identify which of their needs you can meet. You may be the team leader or “primary” caregiver, or you may be a team member, perhaps taking the lead on certain areas of the care plan, such as providing hands-on care, financial management, assistance paying for expenses, care coordination, meals, transportation, socialization, or housing coordination (whether they live in their own home, in your home, or at a facility).
5. Fill the gaps: build your team.
Once you determine what you can do, you’ll be able to identify gaps that need to be filled by other team members. All caregivers need help – no one can do it alone. Your team may include:
- Other family members
- Faith community members
- Paid caregivers or home health aides
- Respite care providers
- Adult day care centers
- Social workers or discharge planners
- Geriatric care managers or aging life care experts
- Your local area Agency on Aging
- Medicaid case managers
- Veterans Affairs
- Local organizations that provide home- and community-based services
- Staff of the facility where your loved ones live
- Disease-specific organizations such as the Alzheimer’s Association, the Parkinson’s Foundation, or the ALS Foundation.
Your loved ones’ care team may even include a hair stylist, manicurist, massage therapist, yard care worker, or housekeeper. Your team will grow and change according to your loved ones’ needs.
6. Gather key documents and resources.
In addition to the health care information you’ve compiled, make sure you have originals or copies of other important documents, including legal, military, financial, insurance, health, home, family, citizenship, and care documents. You’ll find more in-depth information about important documents to locate in our article, What are the legal and other documents I need to have?
7. Create a budget.
Once you understand your loved ones’ needs, make a budget that includes their income, their other financial resources, and their current expenses. Is their current income enough to cover expenses? Do they have savings or investments they can access to help make ends meet? Do they have long-term care insurance that can help pay for care expenses? It can be difficult to know how their needs will change over time, so work with a financial advisor to create a long-term plan/budget and get a realistic idea of what will be needed. You’ll find more about the financial matters of caregiving in our article, Where can I get help with the financial aspects of caregiving?
8. Explore benefits and services.
If their current budget is not enough, find out if your loved ones might be eligible for Medicaid, Extra Help for medications, nutrition benefits like SNAP or home-delivered meals, veterans benefits, utility assistance, and other programs. Contact your local agency on aging and ask if there are services that might be provided to them for free or on a sliding fee scale.
9. Address work challenges and utilize employer support.
If you are experiencing a caregiving crisis or find you are struggling with your work situation as caregiving increasingly uses up your time and energy, consider how you can adjust your work. Taking leave, adjusting work hours, or taking advantage of employer support for caregivers may be helpful. Be sure to protect your current and future financial security as you adjust your work. You’ll learn more about support for working caregivers in our article, How can I juggle work and caregiving?
10. Get support — care for the caregiver.
Whether you choose to care because of love, a sense of duty, or other reasons, caregiving can be stressful. Taking care of yourself while you care for others is not selfish — it’s a very practical thing to do, because if something happens to you (illness, burnout, etc.), you won’t be able to provide care. So, make the time to do things that nurture your body, mind, and soul. Whether virtually or in-person, socialize with friends, and join a caregiver support group (there is nothing like talking with someone who really gets it). It’s a good idea to plan ahead and schedule things that are important, such as your own health care appointments, sleep, exercise, healthy nutrition, socialization, and fun. Look into respite care for your loved ones so you can get a break and do what you need to do to take care of yourself. Find out more about self-care in our article, I’m exhausted and stressed out…where can I get help? Also, see this Real World Health Care blog post, Caregiving Expert: Fill Your Tank, to learn more about my own system for taking care of myself, which I developed while I was caregiving for my parents and my sister.
- Benefits Check Up (NCOA) is a comprehensive online tool to connect older adults and people with disabilities to benefits. The tool helps you see if you may be eligible for many benefits that can help pay for health care, medicine, food, utilities, and more by answering questions anonymously and then helps you find out where to apply online or how to get help from a benefits counselor.
- Caregiver Worksheets (The National Institute on Aging) include coordinating care, important documents and paperwork, a home safety checklist, and more.
- Caregiving at Home: A Guide to Community Resources (The Family Caregiver Alliance)
- Caregiving Guides (AARP) in several languages and versions (such as LGBTQ and Military/Veteran versions) for download or to order print copies.
- The Eldercare Locator (U.S. Administration on Aging) website or toll-free helpline 800-677-1116 is available to help you navigate to programs and services provided for older adults and family caregivers at the state and local levels. They offer a free online publication Let’s Talk: Starting the Conversation about Health, Legal, Financial and End-of-Life Issues
- Falls Prevention Conversation Guide (NAC and NCOA)
- The Family Caregiver Toolbox (CAN) offers a which includes the Basics of Caregiving and several other topics discussed in this article.
- Find an Aging Life Care Expert (Aging Life Care Association) is a search tool to find an aging life care expert, geriatric care manager, or eldercare consultant in your area who can help you assess the situation and create a caregiving plan.
- Guide to Public Benefits (AARP) offers a state-specific guide with information about public benefits for every state.
- The Respite Locator (ARCH Respite Network) guides you to respite programs in your state and local area. ARCH also offers a guide, The ABCs of Respite: A Consumer Guide to Respite for Family Caregivers.
- State Caregiver Resource Guides (AARP) help you locate key programs, services, and agencies in your state and community, including health, legal and financial assistance, and respite care.
- The VA Caregiver Support Program (Veterans Affairs) provides a free caregiver support line at 855-260-3274 as well as a number of resources, including a hyperlinked listing of Community Resources for Caregivers. Their site also includes information about veterans benefits.
Amy Goyer is a nationally known caregiving expert and author of Juggling Life, Work, and Caregiving. A passionate champion for caregivers, she has also been one her entire adult life, caring for her grandparents, parents, sister, and others. Connect with Amy on Facebook, Twitter, and LinkedIn.