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Darlene Newby's family Joining the Fight Against Alzheimer's

Newby Family Honors Their Mother's Legacy With Gift to TTUHSC

By Danette Baker, TTUHSC Institutional Advancement Communications

 

After their father’s death, Byron Newby and Hi Newby, Jr., expected their mother would, at some point, return to her “extremely capable, on-top-of-everything” self. Instead, she slowly slipped into someone she would never have wanted to become.

“We just missed the signs (of Alzheimer’s),” said Byron. “We didn’t want to see them, or we were in denial. Either way, Alzheimer’s changed everything about her. We really had no idea what to expect and had no idea how to help her and, at the same time, we had to take over her life. There’s a lot of guilt that goes along with that.”

 It was a feeling, Hi said, they would never wish on anyone, and they knew they had to do something. In November, a week after their mother’s funeral, the Newby family invested in the fight against Alzheimer’s by giving to support research and caregiver education at TTUHSC.

 “To be real honest,” said Byron, “we gave selfishly as a way for us to heal. We watched a slow death of my mom over five years, and it took a toll on all of us. But, now we were no longer focused on what we had to face and how long it was going to last and what bad things could happen next. We were able to focus on the positive and how just maybe we could do something that could prevent someone else from having to go through what we experienced.”

 

A GIFT THAT KEEPS GIVING

 Before their mother’s death, Byron and Hi had decided they wanted to make a gift—a legacy to their mother—that would have an immediate impact on Alzheimer’s disease. “We knew our one gift wouldn't lead to an immediate cure, that wasn't our goal as much as providing one link in the chain, so to speak,” Byron said. “We had lived it and saw the stigma of Alzheimer’s experienced by other family members and friends who were now living through it and saw such a need for answers and awareness and support for the caregiver.”

 “And we really wanted to keep our dollars local,” added Hi.

Through their mother’s neurologist, Katie Hendley, MD, the Newbys were introduced to TTUHSC scientist Gail Cornwall, PhD, the Garrison Brain Bank and the university’s geriatric education programs. 

“I didn’t know much about the Newby’s story, but you could tell they wanted to do something to make a difference by the questions they asked,” said Cornwall, professor in the Department of Cell Biology and Biochemistry, who leads pioneering research in functional amyloids in the male reproductive system. Amyloids are protein structures the body produces naturally for function; there are similarly structured proteins in diseased neurological tissue such as with Alzheimer’s and Lou Gehrig’s disease.

 The Newby’s gift, she said, will support novel research that will help them understand how amyloids form in healthy tissue, and, in turn, possibly provide insight into what happens that leads to Alzheimer’s or these other neurological disease states.

“Private funding supports the ‘first steps’ in research that allows us to then leverage dollars at the national level to really move research on to its full potential,” she said. “Hopefully, I gave them a sense that I’m going to do something with it and knowledge will be gained.”

Additionally, the Newbys chose to support the Garrison Brain Bank and the university’s efforts in geriatric education. John Culberson, MD, director of the university’s geriatric medicine programs, quoting a plenary speech from the American Geriatric Society, said caregivers are the future treatment of Alzheimer’s disease.

“With almost all chronic illnesses, including Alzheimer’s, there are very few cures. There are medications and treatments that can slow the progression in some cases, but the one constant is the caregiver. Whether a professional or family member, caring for someone even with mild dementia, can be frustrating, tiresome and even fearful.” 

 

TELLING MOM LITTLE WHITE LIES

One of the hardest things about caring for their mother, Hi said, was having to tell his mother little white lies to protect her from herself. At one point, she got up every morning and would lay her clothes out and then start looking for her suitcases. For a while the caregivers could detain her long enough for us to get there and convince her to wait until the next day; the day finally came when we had to take her car – and then tell her it was at John Roley in Brownfield for repairs. She called the dealership and was then convinced. After that, she never asked about it again.

He and Byron described their mother, Darlene, as a highly capable and creative woman. Darlene had a successful career as a charge nurse and nursing supervisor at Methodist Hospital in Houston before she met and married Hi Newby, MD. She was a supportive wife and mother, a dedicated community member and later an accomplished artist in porcelain, needlepoint and knitting, said her sons.

“She was always on top of everything; sharp as ever, until dad died,” Hi recalled. “That’s when we began to notice some changes, but we would clarify it with the fact that she had cared for dad the past six months and she was just tired and run down.”

And then little by little Darlene’s action just weren’t adding up. Neighbors reported seeing her drapes closed in the middle of the afternoon. She’s just lonely or depressed. The summer before Hi and his wife, Regina, moved her to Lubbock, Darlene showed up for her weekly hair appointment on the wrong day—She just got confused –and then called to apologize for missing it.

The day came, Hi said, when he was telling her about a childhood friend. You could see she was trying to remember, but she just couldn’t find those memories. She would tell you, ‘Oh yes, I remember,’ and you just knew she didn’t.”

 

ACTIONS SPEAK LOUDER THAN WORDS

“Alzheimer’s,” said Byron, “changed everything about her. One of the hardest things over the course of those five years was the helplessness we felt; we had no idea what to expect and had no idea how to help her.”

At first, even Darlene knew there was something not quite right, Hi said. “She would realize she was forgetting things, but when Dr. Hendley finally gave us the definitive diagnosis, mom was right there and didn’t have a clue we were talking about her.”

The Newbys said they experienced it all, and that’s why they gave. 
“If you don’t know someone Alzheimer’s has touched, or if it’s not touched you, it will real soon,” said Hi. “We couldn’t let it take our mom, her sister and other relatives without fighting back. “So, we gave and will continue to give monetarily as we can, but we’re also sharing what information and education we’ve learned along the way. That’s how we’ll make a difference – for our mom – and all of our loved ones.” 

 

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