Why Family Caregivers Need a Backup Care Plan

Why Family Caregivers Need a Backup Care Plan

When Carlos Luis Olivas Jr. was diagnosed with Alzheimer’s disease in 2017, his son, Carlos Luis Olivas III, became his primary caregiver.
As time went on, Olivas asked his younger brother, who lived in North Carolina, to move back home to Sacramento, California, which he did in 2019.

The brothers carried out what Olivas described as “a partially planned template of a plan” for caregiving. But sadly, the plan fell through when Olivas’ brother died in 2022.

“We utilized an emergency backup plan with my brother’s passing and then we had to use another backup plan when I broke my leg in August of 2023,” Olivas, 56, told AARP.

While Olivas went through rehab for his broken leg, his 27-year-old daughter, Eva Acuña-Olivas, who lives with him, and her grandfather, now 83, took on the caregiving role while she worked and went to school. Olivas said his father bought long-term care insurance, which provides limited hours of caregiving help Monday through Friday.

Olivas and his family’s situation is not unique. It turns out that an estimated 42 million U.S. adults are informal and unpaid caregivers to adults age 50 or older, according to AARP.

Health and elder care experts say it’s critical to have a family backup caregiving plan in case the primary caregiver can no longer handle caregiving responsibilities. Without a plan, it’s “all hands on deck,” and other relatives are called to help out. This was the case with Gabriela de Anda.

“My mother was Dad’s primary caregiver and was ten years younger than my dad,” de Anda told AARP. “I never thought my mother would die before my dad. She had a heart attack and died in one day. There was no backup plan.”

So, de Anda left her job as a full-time business analyst for a national company in San Antonio, put her possessions in storage, and became her father’s caregiver.

Sometimes, however, the call for help goes unheeded, even by those who have the time and finances to contribute to caregiving expenses. When this occurs, caregiving duties sometimes fall upon the shoulders of younger relatives. People between the ages of 28 and 43 now account for nearly a quarter of unpaid caregivers nationwide, according to the National Alliance for Caregiving (NAC). This age group puts in an average of 21 hours per week of caregiving for a parent, a spouse’s parent, or a grandparent while raising children, working a job, or trying to find a partner of their own.

What’s more, the NAC reports a new trend is emerging: About 5.4 million children under 18 provide care for parents, grandparents, or siblings with chronic conditions.

While families may figure out a new caregiving plan, they still may not know all of the responsibilities the primary caregiver had been handling, according to Brian Carpenter, a professor of psychological and brain sciences at Washington University in St. Louis. What’s more, families have to decide—and agree on—who’s going to take on specific responsibilities.

“Now that the primary caregiver is compromised, other people have to step up, and that brings stress into their lives. You can’t ignore the emotional stress of having to step up the caregiving,” Carpenter told AARP.

Live-in Care Provides An Alternative to Family Caregiving

Some families are choosing to take the stress off of themselves and hiring agencies that provide 24/7 care or live-in caregivers. While both provide similar services, some older adults struggle with 24/7 care in which multiple caregivers work in rotating shifts throughout the day and sometimes overnight.

With live-in care, however, the caregiver, who is licensed and bonded, lives with the person who needs care and this limits the number of workers who come to the house. By living with clients, live-in caregivers become familiar with their clients’ family members and friends. A live-in caregiver handles personal care duties, such as dressing, bathing, and grooming their clients, prepares nutritious meals, and does some light housekeeping tasks. However, family members can still be part of the care process.

Live-in care agencies provide different forms of support and resources for caregivers and their clients. In this way, caregivers are not left alone, like a family member who is the sole caregiver for a loved one. Live-in caregivers also provide family members peace of mind because someone is always there with their loved one.

Caregiving Impacts Mental and Physical Health

Caregiving can be both rewarding and a burden, a fact confirmed by both caregivers and numerous studies. For instance, half of caregivers responding to a 2023 AARP survey said caregiving increased their level of emotional stress, while more than one-third said it impacted their physical feelings of stress. Anxiety, feeling tired, becoming easily angry, or sleeping too much or not enough are just a few of the many signs of caregiver burnout.

Live-in caregivers help alleviate burnout by providing respite care, which allows family members to take a break and run errands, visit with supportive family and friends, take a walk, or simply enjoy a cup of coffee.

Health experts say that stress builds up over time because family caregivers typically put their loved ones first and neglect their own well-being.

“You don’t think you have time for your own medical needs and mental health support when you’re spending so much time taking care of others,” according to Charlotte Yeh, chief medical officer for AARP. 

Family caregivers may benefit from joining a support group for caregivers. According to the Mayo Clinic, other caregivers “can cheer you on and help you solve problems.” The group can also serve as a place to make new friends and provide tips for developing a family caregiver backup plan.

As part of a backup plan, families should also consider consulting with an elder lawyer and a financial planner. Mary Andersen, 71, of Tucson, Arizona, the sole caregiver for her 75-year-old husband, Lars, said she had not thought about a caregiver plan because she was looking at the money first.

But she decided to consult an elder lawyer after considering their situation: She has lupus, Lars has diabetes, and some cognitive decline. She is five feet, three inches tall, and Lars is six feet, four inches tall. He has fallen a few times and weighs 350 pounds.

“I started thinking, what if I needed a caregiver? How are we going to afford this?” Andersen told AARP.

Elder lawyers look at the “big picture”—from the financials to legal documents and possible scenarios to prepare families, according to Judy Flynn, vice president of the National Academy of Elder Law Attorneys, based in Vienna, Virginia.

“One bad fall and you’ll be no good to your husband or wife,” Flynn told AARP. “It’s not just who will provide the care, but how do we make this sustainable. That way, if something falls through with the primary caregiver, other sources are in place.”

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