End-of-Life Planning When a Family Member Has Dementia

At a gathering over the summer, a family member shared the story of a mother and daughter dealing with the challenges of Alzheimer’s disease. I found myself thinking about this story months later – realizing it’s an important story to tell. So I called my family member and asked a few more questions about the people in her story in an effort to share their challenge and prevent others the same heartache.

Here’s their story.

In 2015, “Susan” was diagnosed with Early Onset Dementia. The news was devastating, but Susan thought she still had the time and the ability to make her own decisions. Unfortunately, the disease progressed quickly, and in less than a year Susan was diagnosed with moderate Alzheimer’s disease.

In a matter of months, Susan was no longer able to care for herself or make decisions, and her only daughter, “Carol,” found herself in a situation she was unprepared to handle. Carol left a job she had enjoyed for 14 years to care for her mom full time. With help from friends, she learned (and is still learning) how to handle her mom’s health care requirements.

Between diagnoses, Susan, Carol, and other family members did get together to learn Susan’s wishes and to make decisions together. Susan shared her burial and memorial wishes. An attorney was hired to help prepare financial and health care power of attorney forms.

Despite efforts to include all immediate family members, decisions were still made that caused family disagreements. Specifically around who was given power of attorney over financial and health care decisions.

Susan now requires more specialized health care. She still has good days, but those are becoming fewer.

Carol is busy trying to care for her mom, while doing her best to handle new tasks that arise. Recently, she found out about a loan that she was unaware of. Unexpected expenses are difficult, especially when there is no wiggle room in the budget. Add to that, she is researching options for prepaying final expenses.

I asked my family member (who has been a constant help to Susan and Carol) what she would like people to know so that they may be better prepared. Here’s what she told me:

• It’s important to start the end-of-life conversation early. And talk openly about everything: final wishes, debts, property, who will execute the power of attorney – everything. An open and honest conversation lays it all out. When everyone is clear about what is to happen, it’s harder to have family disagreements.
• Get the legal documents written, including a medical power of attorney form. The forms are available at hospitals and clinics, and health care providers can help you fill them out. The forms can be changed as needed, until they are activated. Provide copies to all who need one.
• Carefully choose two trusted individuals as power of attorney, with one being named primary. Tough decisions need to be made, so who you choose should be able to handle the task.
• Ask questions – lots of them so you understand what is happening and what your loved ones wishes are; how legal documents work; how the final expenses will be paid, and more.

As I listened to the story, my family member could not emphasize enough the importance of health care directives. She mentioned it many times and stressed the need to have lots of copies. I suggested keeping a copy electronically in an online account, such as My Life & Wishes. She admitted she hadn’t thought to do that, and that it would make it easier.

Life planning requires open communication with loved ones and a record of all the information your loved ones will need when the unexpected happens. A secure My Life & Wishes account makes it easy for you to create a digital record of your final wishes and important documents, and share this information with loved ones.