The Aging Caregiver: Planning for the Future Before it’s an Emergency

For many families, caregiving isn’t something they think about; it’s simply what they do. 

With everyday tasks like managing medications, scheduling and attending appointments, cooking meals, and coordinating activities on their plate, caregivers may not have time to ask themselves what will happen if they can no longer provide care.

Lakelyn Eichenberger, a gerontologist and caregiving advocate who also serves on Mosaic’s Board of Directors, said planning for that possibility is one of the greatest gifts a caregiver can give their loved one. But she understands that discussing the topic isn’t easy.

“It can be a very hard conversation to have,” she said. “People don’t always want to admit that they are aging or think about turning the care of their loved one over to someone else.”

But it’s an important discussion that needs to happen, and the best time to have it is when the person supported, their caregiver, family members and others involved with their care,  can provide input, not when there’s an emergency.

Eichenberger studies the aging process and helps families and communities navigate the unique challenges older adults and family caregivers face. 

The need for families to have a long-term plan for their aging parents and other family members has long been a topic of discussion. But Eichenberger said the need to establish a plan for people served by aging caregivers, such as individuals with intellectual and developmental disabilities (IDD) and other diverse needs, is a more recent conversation.

“People across all ability types are living longer, especially in the IDD community,” Eichenberger said. “Often, older parents are serving as the primary caregivers for their loved one with IDD, and that creates a lot of challenges.” 

It’s especially concerning, Eichenberger said, when the caregiver has health issues, such as a chronic disease, or is showing signs of cognitive impairment. 

“The last thing we want is for something to happen to the caregiver, and there is no plan in place for their adult child with a disability,” she said.

1. What happens when I can no longer provide care?

A long-term care plan should reflect what’s important to the person supported, Eichenberger said. To better understand their wishes, you can ask these questions:

• Do you want to live with another family member, if possible?
• Do you want to explore a shared-living or group living arrangement?
• Do you want to live independently, with support?

2. Who can I lean on now? 

You can lean on an IDD provider like Mosaic. Mosaic can recommend actionable steps to help you prepare for the future now, such as applying for a Medicaid waiver if the person you support is interested in home- and community-based services. Mosaic can also determine whether you can qualify for financial compensation as a family caregiver. 

3. Do I have a plan for short-term emergencies?

If you don’t have a plan for unexpected illnesses or injuries, make one proactively. If you are the person’s guardian, ask an attorney about establishing an alternate guardian if something happens to you. 

“I know a family where the caregiver fell and had to go to rehab for two weeks, and the family didn’t have a plan in place,” Eichenberger said. “Even for short-term emergency situations, a backup plan is critical.”

Hopes for The Future

Eichenberger is happy to see the topic of aging caregivers getting attention and hopes that, as she and others who study aging gain more information, more resources will be available to help families navigate the process.

It is also her hope that people with IDD and their families get the support they need to live the life they desire. People like her Uncle Jay, who thrived thanks to the support he received from Mosaic until his passing in 2001.

“As a board member, I’m learning how overwhelming the process is,” she said. “But, having the conversation is a big first step.”

In many states, family members who provide daily care to a loved one with a disability can be compensated for that work. To learn more, read about Being A Mosaic Host Home Provider and reach out to the Mosaic location near you.

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