He reads his wife same love letter every day as Alzheimer's steals her away - Hometownlife.com

Kristen Jordan Shamus Detroit Free Press

Published 7:36 AM EDT May 7, 2019

Brent Jones fell hard for Geraldetta Toney.

It was during a business meeting in Detroit at The Wellness Plan when he first saw her.

"All of a sudden, this beautiful lady walked into the room," he said. "I said, 'Wow! Who’s that? She’s cute.' "

She was known by friends and family as Gerri, and Brent soon learned that she was the company's no-nonsense, hardworking director of health care quality.

"She was saying, 'This needs to be done, and this is the way I want it,' and I said, 'Oh yeah, she’s got it together,' " Brent said.

It took a little while for Brent, who was the newly hired director of information technology, to convince Gerri to go out with him.

Both were single parents and neither was looking for love, but Brent said he saw something special in her. He kept asking her out, and she kept refusing.

Finally on March 3, 2001, Gerri agreed to go to dinner with Brent at a seafood restaurant near 14 Mile and Stephenson.

"I guess it went pretty well," he said with a grin. "She let me take her out again. ... We have been together since."

Theirs is a love story without all the syrupy tropes of a Hollywood romance. It's one riddled with the complications of everyday life and the bittersweet reality that sometimes people get sick. And in the depths of that sickness, a person might just forget about that special first date, her wedding, and even, on the hardest days, the love of her life.

Helping her remember

Brent, 71, now lives alone in a 2,900-square-foot, two-story house in Novi.

Black kitten heels sit neatly by the steps leading up the stairs. Women's clothes are piled in a laundry basket nearby, ready to be washed.

Gerri, 68, lives 5 miles away in Farmington Hills. Brent does her laundry and brings those shoes for her to wear when he takes her out on their weekly Saturday dates. Sometimes, they go out to dinner or to the movies, to visit a friend or her sister. When the weather is nice, they go for a ride to Kensington Metropark to sit together outside.

He visits her every day, and tries to help Gerri remember.

"The last year she was home for her birthday, I wrote her a letter and I had it framed," he said, tearing up as he recited the words he now knows by heart:

"There’s only one thing you ever have to know, and it’s that I love you and I always will. From the first time I saw you, I knew you could be the one I always looked for and you are. I will be there for you and I will take care of and shelter you for the rest of our lives. I love you forever.

"I just decided I would tell her every single day. And she forgets it every day, so it’s like new to her each time she hears it."

Gerri has Alzheimer's disease, and it's stealing the smart, capable woman Brent once knew.

"I mean, Gerri was brilliant," he said. "That’s the hardest part, you know?"

He explained how before she went into health care administration for The Wellness Plan, Gerri was a nurse. "She was high level as a clinical nurse. I mean, Gerri ran the ICU (intensive-care unit). She was head nurse for open-heart surgery."

Most of the time, she still remembers Brent.

"There have been periods of time when she didn’t," he said. "There were times when I had to call either a doctor or her sister at 2 or 3 o’clock in the morning and get them on the phone and have them convince her. ... You know, she just didn’t believe it was me. She’d come up to me and say, 'Where’s Brent?' And that just breaks your heart. She knew Brent was her husband, but she didn’t know I was Brent."

'I just regret we didn't have more time ...'

When they met, both Brent and Gerri both had children from previous marriages. They didn't want to rush into a wedding of their own.

They went on dates, and Brent, an Ohio native and die-hard Ohio State Buckeyes fan, convinced Gerri to go with him to Saturday afternoon college football games in Columbus.

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"We’ve had Ohio State season tickets in our family for 20 years," he said. "Gerri had no interest, but I finally forced her to go to an Ohio State football game with me. ... The first time she saw it, she said, 'I can’t believe this. Look at all of these people! They’ve all got on red!' And I said, 'Now Gerri, it’s scarlet. Get it right. If you’re gonna be a Buckeye, you gotta get it right.'

"She became a fan. She went to several games with me. I got her a jersey and we’d go and hang out. She got into it. ... I never let her forget that she’s a Buckeye."

They took a trip to the Bahamas in 2002, and began to plan their future.

"She is the love of my life," Brent said, sighing, as he sat on the sofa in the family room of their Novi home.

"I bought this house because Gerri and I were dating and it was obvious we were going to get married, and I thought we would buy here, she would sell her house and we would put both our names on this house. But it didn’t work out that way," he said.

They waited until 2010 to say their I dos.

"I just regret that we didn’t have more time together as husband and wife, you know?" Brent said. "We had all of these plans. We had planned out what we were going to do when we retire. Our plan was we’ll stay here, but after New Year’s every year, we’ll get a three-month rental somewhere. ... Now, of course, Gerri got sick and all that went down the tubes. ... It is what it is. Whatever life is, you deal with it."

Brent said he first noticed Gerri's symptoms in 2012, after she had back surgery.

"The first signs were kind of confusion, not knowing where she was at, forgetting things," he said. "My mother passed away from Alzheimer’s, so I had seen the signs."

But he wasn't ready to admit that the same disease could be affecting his wife.

"I was pretty sure, having watched what my mom went through, but you don’t allow yourself to say that.

"We saw these things happening, and they happened gradually. At first, I thought it was just pain and things from the surgery and recovery from that had her in a bad mood. But then, it just started getting bizarre. One night, she got completely confused. She didn’t know who I was."

Researchers now say people with Alzheimer's may begin to experience brain changes as early as 20 years before symptoms appear.

For reasons not yet known, the disease disproportionately affects women.

"Two-thirds of people that develop Alzheimer’s are women," said Jennifer Lepard, president and CEO of the Alzheimer's Association Greater Michigan Chapter. Because women are also more likely to be caregivers of relatives with the disease, "it’s a double-whammy for women. If they’re not the ones with the disease, then they are often the ones that are doing the most intense caregiving.

"It is not yet clear what the biological reasoning for that is. ... When you control for age itself, it is believed that there are potentially other risk factors for women that are not yet well understood."

The disease affects African Americans at about twice the rate of Caucasians; Hispanics are 1.5 times more likely than Caucasians to develop Alzheimer's, according to the Alzheimer's Association's 2019 statistical report.

Brent said his father, Gordon Jones, worked tirelessly to care for his mother, Mildred Jones, as her memory slipped away. He didn't know it at the time, but he was teaching Brent by example what to do long before Gerri got sick.

"My dad is one of those people," he said. "It was like, my name is Gordon Jones. I can do anything. This is my wife. This is my family. I am going to take care of them and I don’t need any help, and my dad is one of those people who wouldn’t give up on anything. Nothing.

"You take care of your family. So that was ... the example," Brent said, looking to the sky. "If I didn’t, my dad would come down here and kick my ass."

Alzheimer's demands creativity and patience

As Gerri's symptoms progressed, Brent had to get creative. He was determined to take care of her on his own.

"I remember making signs and taping them to the bedroom wall to remind her of stuff," he said. "It was just gradually getting worse and worse. I had one sign up there to remind her that she didn’t work anymore, that she was retired."

Brent put signs on the bedroom door telling her not to open it, hoping it would deter her from wandering out of the room while he was asleep.

"She got to the point where she couldn’t sleep through the night. And if she couldn’t sleep, I couldn’t sleep because I had to keep an eye on her," he said. "One time, I had fallen asleep early in the morning on the couch. And I woke up and I called for her and she didn’t answer.

"I went out and looked in the garage, and her car was gone. ... I had put an app on her cellphone that I could tell where she was going. It looked like she was going to her sister’s, who lived in Detroit. She took 275 to Six Mile, but instead of turning east, she turned west toward Ann Arbor. I kept trying to call her, but she wouldn’t answer the phone.

"Eventually, she realized she was lost and called me to come get her. I had her follow me back home."

He learned to go along with whatever narrative was playing out in her mind.

"One night, Gerri was in the bathroom, and she thought she was at work at the hospital, apparently in the operating room," Brent said. "You could tell she could see the doctor and the attendants around her. She was talking to them, giving instructions, giving directions, and all of that.

"I learned from the Alzheimer’s Association that when you see that, don’t interfere with it. Just let it go. I let it go until she finally got tired of it or just shifted or whatever. I was finally able to go get her and help her back into bed. We had several bizarre incidents like that when she’d just snap back to being a nurse, and no matter what you told her, that’s where she was. There were times when I’d pretend to be sick so she could take care of me, because she thought she was nursing me."

He found other strategies, too.

Brent had a group text at the ready so he could quickly send a message to friends and family, asking them to call Gerri to distract her when she got agitated. He discovered that judge shows were calming to her, so he recorded them and played them for her through sleepless nights to keep her settled.

But along with the confusion came anger and aggression. She grew increasingly suspicious, easily agitated and would lash out violently, hitting and scratching him.

"There’s nothing you can do to change Gerri’s mind if something has got her upset," he said. "There’s nothing you can do to tell her it’s OK. So what you learned to do is to go along with it — whatever she says. When she gets angry, you just let her do it. Whatever she says, you agree with. Arguing isn’t going to get you anywhere. Whatever it is, go along with it and she’s going to forget about it in a few minutes anyhow."

But one day, Brent said, he'd fallen asleep when Gerri got agitated.

"The next thing I know, she was standing over me," he said. "She had hit me on the head with something, and I had a big knot on my head. I still, to this day, don’t know what she hit me with. So then, I had to call the police."

That's when Brent finally realized he couldn't care for her anymore by himself. He needed help.

Moving Gerri to an assisted-living facility in June 2018 was one of the hardest decisions he has ever made.

"My job is taking care of Gerri," he said. "She's my wife. When you get married, you promise to be there in sickness and in health.

"And having my dad go through that, now, every time I get weak with Gerri in the facility, I look up to the sky and say, 'Dad, I’m doing what you would expect.' Dad is my source of strength because he gave everything he could to my mom. And I intend to do the same with Gerri."

He goes to Gerri's place every day about 4:30 or 5 p.m. to have dinner with her. He always tries to think of something to tell Gerri that will make her smile when he gets there. Talking about her daughter, Kelsey, their three grandchildren and a 6-month-old great granddaughter usually does the trick.

"That’s one of the things I do to cheer her up because she doesn’t remember," he said. "So every day, for three or four weeks after Iris was born, I’d say, 'Honey! Guess what? We’ve got a brand new great granddaughter.' That would put a big smile on her face."

He tells her he loves her in the same way every day, and then, they settle in together, watching a TV lineup that includes the "Steve Harvey Show" and "Family Feud."

"And then either myself or one of the caregivers gets her ready for bed," Brent said. "Then I just lay down with her with my clothes on top of the covers until she falls asleep."

He quietly slips out of bed so she doesn't wake and goes home. If she asks the next day where he's been, "I just tell her, 'I had to go to work before you woke up.' "

There used to be moments of clarity, when she talked to Brent like she used to. Now, he said, “she has a hard time, you know, expressing herself. She gets confused and just kind of mumbles sometimes."

The caregiver needs care too

Since Gerri got sick, Brent has lost 25 pounds.

"It’s just such a horrible, horrible disease," he said. "And, of course, I always worry about it for myself because obviously my mother had it. ... We know it runs in the family. I keep telling myself, you’ve gotta take care of her. You can’t get sick. You cannot get sick."

He's eating better now, and is trying to regain some of the weight he's lost. So far, he said, "I’ve been blessed with good health."

Brent still hasn't given up hope that Gerri can come home again.

A few weeks ago, he asked the Alzheimer's Association for a list of home health care aides who could help him with Gerri if she left the assisted living facility.

"Maybe we could even have someone come and stay overnight," he said. "I’m investigating what the cost of that would be vs. the facility and whatnot. I miss the hell out of her."

He looked around the family room of the three-bedroom house and shrugged.

"I still to this day have not given up hope that Gerri can come home. ... I haven’t given up on that yet, and it may not make any sense, and it may not happen, but I can’t give up hope on it."

Still, he thinks about what he might do if that dream is never realized.

"With this great big house with nobody but me in it, I’m starting to think of what I need to do to get rid of this house, and just get me a little condo or even just renting some place, you know? So then I won’t have to be responsible for the upkeep and the maintenance and all of that. I think in the next year or two, I’ll probably sell this and just get a place for myself if Gerri is not able to come home.

"I know it’s probably not realistic, but I just can’t give up on it."

Contact Kristen Jordan Shamus: 313-222-5997 or kshamus@freepress.com. Follow her on Twitter @kristenshamus.

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