Caring for the Caregiver: Pine Belt families battle Alzheimer's disease

PINE BELT (WDAM) - There's a tremendous cost out there that totals 18 billion hours of unpaid patient care valued at $230 billion. According to the Alzheimer's Association, that's the expense of being a caregiver for an Alzheimer's disease patient.

In the Pine Belt, three families are each dealing with a different stage of Alzheimer's disease. They are allowing a glimpse into the personal role of being a caregiver of a spouse living with this disease.

Richton resident David Freeman said he is fighting for his wife.

"I fight this battle for her as much as I can," Freeman said.

When Freeman let us spend an afternoon with him and his wife, Sarah, they had just celebrated 31 years of marriage. But, three years ago, in sickness and in health went from a vow to a practice.

Sarah was diagnosed with Alzheimer's disease and quickly declined. She can no longer care for herself, and Freeman said she's losing her ability to speak.

"Communicating with Sarah is very limited, and that's what I fight to keep her, to hold onto her, I reckon," Freeman said.

He's holding onto her, even when she can't hold onto the memory of him. Freeman said in the last year, Sarah has begun to forget him. He said he only leaves her to work at his part-time job.

Freeman said that income and dipping into savings not only covers Sarah's needs but his own.

Freeman receives treatments for cancer, Multiple Myeloma. When asked what's next, it's a question he doesn't want to think about.

"I guess, maybe, I don't want to admit or confess to the future that's coming," Freeman said.

It's a future that comes with a lot of questions for the Freemans. Sarah's neurologist, Dr. Ronald Schwartz, is often someone who people look to for answers.

"How is that gonna help the individual right now who is burnt out with the Alzheimer's patient who has been up all night? How can we help that?" Schwartz asked.

For more than 10 years, Schwartz has served as the Director for Hattiesburg Clinic's Memory Center, and that question is amplified each time he delivers the life-changing diagnosis to a family, then watches the burden of the patient's caregiver grow. He said that's usually the spouse.

"The caregivers themselves have their own diseases, and they've got Alzheimer's, too. They're just not as severe," Schwartz said.

In 2016, Schwartz found the answer to his question of how to help. He started Disentangle AD, a nonprofit foundation.

The foundation paid for Freeman to have a sitter for Sarah when he goes to work or when he just needs a break.

"We started the foundation to raise money so that we could give it out to people, and kind of provide that level of relief. Respite care, home repairs, putting locks on the doors, things that have just been out of reach," Schwartz said.

The Freemans are one of three families that benefit from Schwartz's support.

Magee resident Stanley Jones is part of a clinical trial Schwartz offers. Stanley and his wife, Jaime, said the trial is helping them fight for more years together. They've only been married five years

Stanley was diagnosed with Alzheimer's in 2015. He's in the beginning stages of the disease.

"I'm very grateful for my wonderful partner, for sure, because she keeps me up and she keeps me going," Stanley said.

Jaime recently took leave from work to fight by his side every day, thinking for him even when her own thoughts are a web of uncertainty.

"I don't know if I'm always doing the right thing," Jaime said. "I second guess myself a lot. We are just doing the best that we can."

For Lin Harper, she had to think of what was best for her husband, Ronnie Blackwell, even when others couldn't see it.

"We had lots of friends, for example, who just didn't understand why Ronnie needed to go into assisted living," Harper explained.

Harper said she and Ronnie shared a full life as professors. Their home was filled with friends, with her husband at the center, until he was diagnosed with Alzheimer's in 2012. He was only in his 50s.

"At the end, I was literally showering him and dressing him, feeding him," Harper said.

Last summer, she said the strain of caring for him reached a breaking point, leading to a decision to put her husband in assisted living back in January.

"Part of his disease process was he was psychotic at times, heard voices," Harper said. "I was at the point where I was emotional, mentally and physically exhausted."

Harper said life is not the way she wants it to be, but she had to accept the way things are when living with a disease that's a fate worse than death.

If you or someone you know is an Alzheimer's disease caregiver and needs support, here is a list of support groups in Mississippi, including the Pine Belt.