Oftentimes the best way to prepare for a journey – in this case, the journey of long-term care planning for a loved one – is to talk with those who have been there. We know how long-term care planning is supposed to go when the process unfolds smoothly. But what if we haven’t planned, and the caregiving challenge arrives without warning?

This article from NextAvenue helps answer that question – and it comes from an interesting source. The authors are two financial planners, one in Wisconsin and one in California, who both – at a young age – unexpectedly found themselves navigating the world of providing care for aging family members. Elliott Appel (in Wisconsin) and Danielle Miura (in California) have a powerful story to tell about the chaos that arises when caregiver planning fails.

Long-Term Care Planning: When Caregiving Begins Abruptly

The NextAvenue article begins with twin stories of sudden health care emergencies. “One fall and [one] diagnosis changed both of us from everyday millennial financial planners into family caregivers trying to navigate the health care system for our families,” the authors relate.

The two authors go on to explain their respective stories. For Elliott, the caregiving journey was seven years long and began when he was 25 years old. His father, Darrel, was diagnosed with stage IV lung cancer, which he beat, but then Darrell fell ill to dementia not long after. He passed in July 2023.

Danielle’s story was similar. She also began caregiving when she was 25, but her grandmother, Neda, broke her hip after falling on a tile floor. Because her heart was too weak to safely manage a surgery to repair the hip, Neda has been confined to a wheelchair since 2021. 

“Providing family caregiving for a combined nine years has made us passionate about spreading awareness of the large and growing need for caregivers and helping people already caring for family members,” Appel and Miura write. “Here are some pivotal moments along our caregiving journey and tips to help you navigate long-term care planning for yourself or a loved one.”

Start Your Long-Term Care Planning by Organizing Legal Documents

As financial planners for caregivers, Appel and Miura stress that having legal documents in place should be Job One, no matter what stage of the journey you’re in. “These include your will or trust, power of attorney for health care and financial matters and an advanced health care directive,” they explain.

In Elliott’s case, Darrel had a durable power of attorney (DPOA) in place, which made it both possible and much simpler for Elliott to manage all of the finances and pay bills on behalf of his father. Even when Darrel lost his phone after being hospitalized, Elliott was able to get him a new one through the DPOA. It’s a vital piece of documentation for any caregiver.

We wrote about the need for a power of attorney in this recent article on the Blog.

Without Long-Term Care Planning, Caregivers Have to Pick Up the Pieces

The opposite is also true: without a DPOA, life for a caregiver becomes much harder. “This is why it’s essential for aging adults to have a durable power of attorney for financial matters that names an agent — a disinterested professional, for example, or a trusted family member — to step in and manage your finances if you are unable to do so,” the authors write.

They continue, “Talk with your lawyer about the differences between a ‘springing’ durable power of attorney and a durable power of attorney. A springing DPOA usually becomes effective only if two physicians declare you incapacitated. While this sounds nice on paper, it does not work well in practice with cognitive issues, where someone can often still make their own decisions about things like how to cook or what to wear but can’t look after their financial affairs.”

Long-Term Care Planning: “Test Drive” Your POA

Instead of waiting for a crisis before learning more about your DPOA, it’s ideal to test it out by filing a copy of it at each of your financial institutions. “This way, you can test whether it allows you to move money, call and get information about your account, and make other changes,” Appel and Miura explain.

This isn’t just for your sake; many banks and financial institutions are still ill-equipped to handle legal documents, and testing out your DPOA could also reveal potential issues before they become a real problem. Elliott experienced this firsthand, when his father’s bank told him that they didn’t have Darrel’s DPOA on file, even though Elliott and Darrel had previously hand-delivered it to a bank employee.

“The bank resolved the problem but it required more time and stress at an emotionally difficult time for his family,” Appel and Miura write. “Institutions also have different rules around DPOAs: they could for instance, require people given durable powers of attorney to possess certain powers or they may limit a DPOAs’ authority in order to block them from some specific actions, like opening new accounts or changing beneficiaries.”

This is why testing your DPOA out before you truly need it can be hugely beneficial.

Long-Term Care Planning: Your “In Case I Die” File

When Danielle’s grandmother fell, it was completely unexpected and caused a mad scramble on the part of the family to figure out how to proceed. “It felt like trying to assemble a big jigsaw puzzle that was missing half of its pieces,” Miura writes. “If you think all your documents are squared away and easy to find, it’s a much different story when someone else looks for them and looks at them without your support.”

This is why Appel and Miura highly recommend preparing an “in case I die” file, calling it an act of love for your loved ones. “Assembling such a file helps you organize your critical financial documents in one place in case you become incapacitated, ill or unexpectedly pass away. The file can be as short as one-page or as lengthy as a book,” they write.

The authors explain that a file like this should contain critical financial documents, recurring bills and how to pay them, account information and passwords, an inventory of assets and liabilities, and your estate-planning documents. And most importantly: it should explain how you want your finances and health handled by your loved ones.

Long-Term Care Planning Includes Picking a Lieutenant

Appel and Miura agree: it is a good idea to make sure you have a trusted loved one set up as an additional contact on key accounts ahead of any crises.

When Elliott’s father was hospitalized, they needed a note from him to access his cell phone account and set up a new one. This is something Elliott wishes he had been given access to much earlier, because attaining his father’s signature as the dementia progressed grew more and more difficult.

Educate Your Caregivers About Your Long-Term Care Planning

“Navigating long-term care during the pandemic was like finding Goldilocks’ perfect porridge,” Appel and Miura write.

Danielle and her family struggled to educate an ever-rotating series of in-home care agencies about Neda and her unique needs. When Neda got COVID, the care agency refused to care for her, facilitating Danielle starting all over again with a new agency.

“Even though Danielle worries that care workers may burn out working longer hours, it eases the stress of high turnover and inconsistent care. Importantly, working with a geriatric care manager has helped Danielle understand her grandmother’s needs, evaluate local care agencies and coordinate medical services,” the article states. “If you have a loved one with behavioral issues, ensure assisted living facilities or adult family homes closely read their medical records and know their behavior.”

In Long-Term Care Planning, Learn from Others’ Mistakes

In the end, Appel and Miura’s message is clear: caregiving is difficult enough without preventable surprises making things worse.

“One of the most thoughtful gifts you can give your family is to make sure your legal documents are in place, you have clearly expressed your desires to family members and you understand care options and their costs,” they conclude. “We have made mistakes, planned appropriately and learned as we went along. We hope Next Avenue readers will learn something from our experiences and use it in their lives.”

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(originally reported at www.nextavenue.org)