The Chaos of Not Planning

One fall and diagnosis changed both of us from everyday millennial financial planners into family caregivers trying to navigate the health care system for our families.

Elliott's caregiving odyssey lasted seven years. He was 25 years old when his father, Darrel,  was diagnosed with stage IV lung cancer. He beat the cancer, only to suffer from dementia years later. He died in July 2023.

Danielle's caregiving journey also started when she was 25, after learning that her grandmother, Neda, had fallen on a tile floor and broken a hip. Her weak heart precludes surgery to repair the damage, so she has been confined to a wheelchair since 2021. Danielle's goal is to ensure that her grandmother is as comfortable as possible, while maintaining her health.

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.

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.

Our chosen profession is as financial planners for caregivers; we can't stress enough how important it is to have your legal documents in place. These include your will or trust, power of attorney for health care and financial matters and an advanced health care directive.

Luckily, Elliott's father had a durable power of attorney (DPOA), which made it much easier for Elliott to manage his father's finances and pay bills that had become overdue as Darrel's dementia worsened. When Darrel lost his phone after being hospitalized, the DPOA enabled Elliott to get him a new one.

When problems arise and legal documents are not in place, it is much harder for caregivers to pick up the pieces. 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.

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.

Before a catastrophe occurs, file a copy of your DPOA 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.

Many banks, brokerages and other financial institutions need to be more legal and paperwork friendly. Elliott remembers his father's bank telling him it did not have Darrel's DPOA on file even though Elliott and his father had gone to the bank and hand-delivered the document to a bank employee.

The bank resolved the problem but it required more time and stress at an emotionally difficult time for his family.

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.

When Danielle's grandmother fell, her family scrambled to pick up the pieces of her life, from getting access to her bank accounts to gathering the list of her medications. It felt like trying to assemble a big jigsaw puzzle that was missing half of its pieces.

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.

Although no one wants to think about an unfortunate event, preparing an "in case I die" file is an act of love. 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.

In any case, it should at least include critical financial documents, recurring bills and how to pay them, account information and passwords, an inventory of your assets and liabilities and your estate-planning documents. Most importantly, it is key to informing your loved ones about how you want your finances and health handled.

Set up a trusted loved one as an additional contact on your key accounts. For example, when Elliott's father was hospitalized, they needed a note from him to access his cell phone account and set up a new one. Elliott wishes he had been added as an authorized user on his father's account earlier because it was challenging to get his father's signature after he declined mentally.

Navigating long-term care during the pandemic was like finding Goldilocks' perfect porridge. Danielle and her family went through three in-home care agencies before finding a fit.

The first care agency's frequent shift changes meant repeatedly educating care workers about the layout of the house and her grandmother's medical history. When Neda got COVID, the care agency refused to care for her, so Danielle had to find a new agency. It started well but care workers started arriving late and stopped attending their shifts. The third agency switches workers weekly.

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.

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.

Elliott had to let his dad fail to age at home because caregivers did not want to work with him there and he would not move into a different living situation. When Darrel called his son and pleaded for him to arrange for another living situation, they agreed on an assisted-living facility.

However, the facility's administrators did not closely read his father's file, and when he acted up they kicked him out of the facility within 48 hours. Those 48 hours cost over $5,000 due to move-in fees and other costs.

Caregiving is not an easy road, even with the best-made plans. 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.

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.