The Caregiver’s Journey—A Four-Part Series

On May 26, 2011, former First Lady Rosalynn Carter testified before the U.S. Senate Special Committee on Aging, saying, “There are only four kinds of people in the world: Those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.”

Today, 1 in 5 Americans ages 18 and older—about 53 million people—are providing unpaid care to a family member, friend, or neighbor. While people of different generations are family, or informal, caregivers, the average one is middle-aged, employed full-time, providing support for someone of equal or greater age, and often raising children of their own.

If you haven’t yet assumed this role, it’s likely you may do so in the future. What will that journey entail? How can you prepare for, manage, and recover from the challenges you might face?

In the first installment of this special four-part series, you’ll find insights, tips, and resources that will help smooth that path for you and your loved one, and make caregiving an effective and rewarding experience.

Part 1: Preparing for Caring

Part 2: Looking After Yourself

Part 3: Getting Extra Help

Part 4: When Caregiving Ends

Part 1: Preparing for Caring

One day you may need to provide care for a loved one. How ready are you to handle it?

Informal caregiving is a unique experience, beginning differently for different people. For some, it begins gradually, with a “creep”—that is, occasionally doing someone’s grocery shopping, balancing that person’s checkbook, tidying up parts of the home, or checking the amount or condition of food in the fridge, which eventually become ongoing tasks. For many others, it starts with a “crisis”—the sudden phone call at work or in the middle of the night, bringing news of a broken hip or stroke.

Not surprisingly, you may already be a caregiver and not think of yourself as one. Or you may not be a caregiver … yet. Should you one day find yourself in this situation, your continual challenge will be to preserve that person’s dignity and autonomy. No matter your situation, there are things that you can do right now to ensure that, when the need arises, you’ll be better able to help. Right now, the best way to prepare to care is to think about your loved one’s current and possible future needs, as well as your own.

Considering Your Loved One’s Needs

Caregiving involves not only one’s health but also one’s entire lifestyle. Now is the time to have important conversations about your recipient’s concerns and the degree to which they would like your help. Such talks should include these three basic factors:

Health: Older adults are likely to experience one or more chronic illnesses such as arthritis, diabetes, heart disease, cancer, or dementia. Take the time to learn as much as you can about how best to address the recipient’s conditions, including their medicines, procedures, and which health care providers are in charge of them. It’s also important for them to have Advanced Directives (Living Will and Health Care Power of Attorney) in place. Review any health and long-term-care insurance policies (including Veterans Benefits Administration) so that you’ll know how to work with insurers when the time comes.

Home: Discuss your loved one’s current living situation and if they are satisfied with it or would consider moving to an independent/assisted living/skilled nursing community when necessary. If, like the majority of older adults, they hope to age in place, assess the home or apartment for important safety features, such as adequate lighting, shower/tub grab bars, latch-type door handles, and wheelchair-width doorways, as well as remove possible hazards, such as small, slippery rugs, cluttered spaces, and tangled electrical cords. For home modifications, look for a builder who specializes in aging-in-place remodeling.

Hardiness: This broad category encompasses one’s financial security, social community, and spiritual needs. How well-equipped is your loved one to not only survive but thrive in the coming years? Are there enough monetary assets to cover home-health services or other emergency expenses? And who will handle bill payment and other financial matters if the need arises?

Toward this end, it’s vital that a Durable Power of Attorney (a separate role from that of a Health Care Power of Attorney) is in place to make sure that your care recipient’s financial accounts are maintained and bills are paid in a timely manner. And a Will should be created in the event of death. An elder law attorney can assist you with estate planning and other aging-related legal issues.

In addition, does your loved one have a supportive social network of nearby neighbors and friends? Belonging to a nonprofit neighborhood “village” or religious community as well as various clubs can protect against a sense of isolation and loneliness. Also, will you eventually live with them, or will you instead be visiting, and if the latter, how often? These are important questions to raise and have conversations about, now rather than later.

Considering Your Needs

Obviously, the amount and quality of care you can give someone greatly depend on your own circumstances. So here are some factors for you to think about:

Where you live: Will you be a nearby or a long-distance caregiver? Long-distance caregiving might require you to engage a professional home-health service or even a geriatric care manager—either of which can be major expenses. The national Eldercare Locator website, as well as the Area Agency on Aging serving the county where your loved one lives, can connect you with important services and information.

Work and finances: If you are employed at a company, find out if there are policies and protocols (paid leave, flex-time, temporary part-time work) in place to support working family caregivers that supplement the Family and Medical Leave Act of 1993. Also think about your own ability to cover any expenses that your loved one may not be able to afford. It’s not unusual for family caregivers to spend thousands of dollars of their own money, and it’s best to be prepared for such a circumstance.

Who else might help: If you will most likely be your loved one’s primary caregiver, are there others, such as siblings, adult children, or close friends, who would be willing to share some of the tasks? Bringing up this question in advance with those people as well as with the person you’ll be caring for can make a huge difference in how well you’ll be able to meet your loved one’s needs.

Whether you’ll gradually grow into or suddenly be called upon helping someone you love, know that preparing for caring is the smartest thing you can do right now to make that future transition into a compassionate and effective caregiver.

Jeanette Leardi is a Portland-based social gerontologist, writer, editor, and community educator who has a passion for older adult empowerment. A former caregiver to her late parents for more than a decade, she now gives popular presentations and workshops in journaling, memoir writing, ethical will creation, brain fitness, creativity, ageism, intergenerational communication, and caregiver support to people of all ages. Learn more about her work at

Want to Know More?

Check out these links for more tips and strategies, as well as to locate resources where you and your loved one live:

Alzheimer’s Caregiver’s Network:

Caregiver Action Network:

Eldercare Locator:

Family Caregiver Alliance:

Family Caregiver Council:

National Academy of Elder Law Attorneys:

National Family Caregiver Support Program:

Rosalyn Carter Institute’s Dealing with Dementia (DWD) Caregiver Support Program.

Twenty-Four Seven podcast:

Veterans/DoD Benefits:

Village to Village Network:

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