Family Caregiving: Planning for Care for You or a Loved One

(FS1931, Oct. 2019)

The time to plan for the care needs of yourself, a family member or another you care about is before the person might need it. At the least, planning often can occur before the care needs become more significant. Planning for care involves strategies such as assessing the situation, discussing the big concerns and forming a support or caregiving team.

Lead Author
Lead Author:
Sean Brotherson, Ph.D., Extension Family Science Specialist
Other Authors

Jane Strommen, Ph.D., Extension Gerontology Specialist; Philip Estepp, M.S., Extension Associate

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Key Issues in Planning for Care

When we are in good health is a time to plan ahead. We typically have more options available to us and time to think and talk with others about preferences and decisions. Do not wait for a crisis to occur before talking about preferences for future care, where a person will live or details about finances. Planning for care needs is similar to planning for retirement – the earlier, the better.

Some unique circumstances to consider that may arise and affect caregiving plans are:

  • Onset of care needs – The shift into caregiving needs may be sudden or gradual.
  • Type of illness or care need – Caring for someone with Alzheimer’s disease or other brain-impairing conditions can be more challenging than caring for someone with a different type of impairment or need.
  • Type of caregiver – Long-distance caregiving can be difficult emotionally and logistically, and not as “hands-on.” Working caregivers typically need to balance their time among a job, their children and the caregiving role.
  • Urban vs. rural settings – Caregivers in rural settings face unique challenges, such as fewer available formal services (health care, etc.), transportation difficulties, weather problems in winter, or geographic distance and isolation.
  • Cultural differences in caregiving – Greater diversity means that families bring their own histories, traditions, rituals and preferences to caregiving. Many cultures have family expectations about the caregiving roles of family members.

Three Strategies to Plan for Caregiving Needs

Caregiving needs vary considerably and each situation has its own unique elements. We encourage attention to three practical strategies when planning for care.

Caregiving Tip 1 – Size Up the Situation

A first caregiving tip is to “size up the situation.” This involves making a practical assessment of the circumstances and the needs that are likely to exist. What do you know and what do you need to know? Establishing a baseline of information can be helpful in making current and future care decisions. To do this, consider the following steps:

  • Talk to the person in need of care, loved ones, family members and friends. Seek to understand their awareness and perspective.
  • Ask the following questions:     
    • 1) What, if anything, has changed for the care recipient?     
    • 2) What specifically is happening that requires attention?     
    • 3) What is happening or needs to happen to meet specific care needs?
  • Get a medical, mental health or care need assessment or diagnosis. You need a clear picture of what is happening. You need basic information to give you a realistic awareness of the care situation, and varied professionals can assist in doing a formal assessment of medical or care needs.
  • Educate yourself on the care needs, illness or related topics. Learn as much as you can about an illness or situation so you can understand what is happening. You cannot know it all because this is a job you likely weren’t trained to do, but knowledge on most situations is available. Sources may include health-care professionals, books or articles on the topic, or online information sources, associations or support groups related to a topic. 

Caregiving Tip 2 – Talk About the Big Issues

A second caregiving tip is to talk about the big issues that must be considered in caregiving. Four big issues are finances, legal concerns, health care and housing.

Financial Considerations

What financial resources are available for care? Most people prefer to keep their financial affairs private. But to best prepare and provide for a family member’s care, you will need to gain a full understanding of the person’s financial assets and liabilities. Develop a list of assets and liabilities, accounts, Social Security income, CDs, stocks, bonds, real estate deeds, insurance policies and annuities, retirement or pension benefits, credit card debts, home mortgages and loans, and so forth. Also, research the costs of home and community-based care options if these types of care might be needed in the future.

Legal Considerations

Do you have legal documents in place that authorize you or another person to make legal, financial and health-care decisions on behalf of someone else? Also, are legal documents, such as Social Security numbers; birth, marriage and death certificates; divorce decrees; property settlements; military records; income tax returns; wills; trust agreements; and burial arrangements, in an accessible location? At some point, you may need to determine eligibility for public programs, such as Medicaid.

Health-care Considerations

The type of illness or frailty of your family member will determine the type of care required, where the care can be received, how much it will cost, etc. Talk about your family member’s wishes and preferences for care and incorporate this into the plan of care.

Housing Considerations

You also may have a variety of issues related to housing to consider. How adaptable is your family member’s home? Would a family member who became disabled or couldn’t use stairs be able to stay in the person’s home? What would making modifications cost? Is the home safe?

Caregiving Tip 3 – Form a Support Team

A third caregiving tip is to form a support team who can work together in providing care that is needed. Caring for a family member or friend is a big responsibility and it typically is more than one person can handle.

Trying to handle all the caregiving by yourself can lead to burnout and your own health problems. Forming a supportive network of family, friends, neighbors, co-workers, etc., can be a tremendous help in caring for your family member. In forming a care plan, care assessments ought to be considered in the following categories (areas of need):

  • Personal care – bathing, eating, dressing, toileting, grooming
  • Household care – cooking, cleaning, laundry, finances
  • Health care – medication management, physician appointments, physical therapy
  • Emotional care – companionship, meaningful activities, conversation
  • Supervision – oversight for safety at home and to prevent wandering
  • Financial affairs – paying bills, understanding health-care costs, insurance claims
  • Transportation needs – getting rides to and from appointments, running errands, etc.
  • Communication – making phone calls, writing letters, staying in touch with family

Creating a Care Plan

A care plan always will be a work in progress because your loved one’s needs will change through time. Start by listing the things you are capable of, have time for and are willing to do. Then list those things that you would like or need help with, now or in the future.

Next, list all your informal supports, such as siblings, other family members, friends and neighbors, and think about how each person might be able to provide assistance. Assign an informal support person to help where needed in each area of need. Repeat these steps for each of the areas of need below to create a care plan. The questions to consider are:  

  • What can I do in providing for care needs?
  • What will I need help with in the caregiving situation?
  • Who can be my caregiving team members? (informal supports, etc.)

Identified Care Need Categories

  • Household care
  • Financial affairs
  • Transportation needs
  • Personal care
  • Health care
  • Communication
  • Emotional care
  • Supervision
  • Other _______________________________________
  • Other _______________________________________

My Plan for Caregiving

Care recipient: _____________________________________________________

Caregiving lead: ____________________________________________________

Figure 1