Loved Ones Spend Life Savings to Care for Dementia Patients

Data shows Florida caregivers are spending their life savings to pay for care of Alzheimer's and dementia patients.
Alzheimer's Association Graphic
Dr. Regina E. Sofer
Posted at 2:00 PM, Apr 07, 2016
and last updated 2016-04-07 12:36:24-04

TALLAHASSEE, FL (WTXL) - According to new numbers from the Alzheimer's Association, Florida has 1.1 million Alzheimer's and dementia caregivers across the state. And those loved ones are sacrificing not only time and energy, but their finances to provide that care.

Dr. Regina E. Sofer has been caring for her mother, Lee Sofer, for over a decade. Sofer moved both of her parents to the area in 2004 and even though her mom wasn't officially diagnosed with dementia until 2008, she began noticing signs that something wasn't right early on.

"Forgetfulness, foraging... rummaging about, being repetitive in her questions or her language and not being the joyful, upbeat mom that I've always known," said Sofer, describing the early changes she noticed in her mother.

In the beginning Sofer's parents were able to help take care of each other; her father Edward, was in a wheelchair after suffering a stroke. Lee could help Edward get around and Edward could help Lee remember. But when her father died in 2008, Sofer's role as her mother's caregiver doubled..

"I don't think any caregiver going in knows what they're about to encounter," said Sofer. For her, that included missing her own doctor's appointments, never getting a full nights sleep, and making constant sacrifices in her own life.

For four years, Sofer took care of both parents in addition to working a full time job. That didn't keep her from eventually spending all of her savings. And Sofer isn't alone in that aspect.

According to the Alzheimer's Association, 17% of children who have parents with Alzheimer's/dementia, and 45% of spouses, spend personal savings and retirement money on dementia-related costs.

The organization also says in 2016 the cost of caring for Alzheimer's and dementia patients is estimated to reach $236 billion. That could mean more caregivers like Sofer are using their retirement accounts to help make end meet.

After spending 5 years making sure her mother had round-the-clock care while living in her home, Sofer finally had to move her mother to a professional care facility.

"I see her regularly, just about every day... to keep in touch, to make sure she is engaged, that she is taken care of," said Sofer. "I do her laundry, take her some of her favorite foods and snacks, and still make sure that she has a human touch."

Sofer's goal above all else with those visits is to make sure that her mother knows she is loved, "There has never been a day that I haven't been proud to be the daughter of my mom. That is not going to happen for as long as I breathe."

After her mom's diagnosis in 2008 and while her mom was still living with her, Sofer went back to school and finished her doctorate. Now she is working with businesses to implement "service leadership" -- helping them learn how they can give back to the community.

She says she wouldn't have pursued the degree if not for her mother's diagnosis and wants to continue making the community a place where those with dementia can thrive.

"She is such a wonderful, loving mother that you want to do the same. She protected us from harm, from strangers, from eating the wrong food, being on the playground," said Sofer. "Now I get to protect her from people who don't understand. From people who think she is less than. From people who don't understand that she still should be loved and spoken to -- and not treated like an inanimate object."

Sofer says those who want to learn more about resources for local caregivers should contact The Alzheimer's Project.