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What can’t be forgotten

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Someone finds a set of lost car keys tucked in a boot. A kitchen cabinet is filled — and keeps being filled — with the same type of food. An elderly man walks down a highway in the dead of night, searching for his childhood home.

Terri Lipe and Barbara Riley

Terri Lipe, left, and her mother, Barbara Riley, pose for a photo in their home. Terri has been Barbara’s caretaker for four years as she battles Alzheimer’s disease.

Those are a few Alzheimer’s disease signs and symptoms that Terri Lipe and her mother, Barbara Riley, have noted and remembered while they stick together through Barbara’s own battle with the disease.

Lounging in their home on a rainy afternoon, Saturday, Sept. 21, the mother and daughter spoke openly about their Alzheimer’s experience with the BH-FP.

In that home, Barbara — who was diagnosed with Alzheimer’s in 2015 — has lived with Terri for four years. 

Since then, at Barbara’s current stage of Alzheimer's disease, Terri said her mother doesn’t remember “anything.”

Before her diagnosis, though, Barbara witnessed her late husband Darrell’s decline of health from the same disease, which prepared her to know what’s coming. 

“One of the stages of Alzheimer’s is you don’t know where you are and you want to go home,” Terri explained, sitting on her couch near Barbara and explaining Darrell’s experience. “And the home most generally is the childhood home wherever you were raised, and (Darrell’s) was Kansas City.”

Terri said one time, Darrell left his Bolivar home in the middle of the night, leaving on foot toward Kansas City. 

Soon after that, Barbara awoke to the police standing on her doorstep.

“He’d made it all the way to Highway 13 and was ‘going home,’ and so they made her put him in a nursing home,” Terri said. 

During the interview, the only detail Barbara remembered of Darrell’s illness was his placement in a nursing home, but Terri was able to list off the details of his Alzheimer’s progression.

Terri said Darrell couldn’t remember how to talk. He didn’t know who Barbara and her family were. He couldn’t remember how to swallow. 

“We learned — the hard way — what to expect and how different it is for everybody, and how different the stages are,” Terri said. 

The disease’s reality is grim. 

“Your brain literally stops doing things — you don’t know how to do anything,” Terri said. “It is the most disgusting disease because it takes every single thing you have.”

 

‘Yellow, park and duck’

Barbara learned she had Alzheimer’s the day Terri bought her home, where they now live. Terri said she closed on the house at noon, and at 4 in the afternoon, Barbara received her diagnosis. 

When asked if she noticed any symptoms leading up to her diagnosis, Barbara said, “I don’t think I know.” 

But Terri, a former teacher,  said she noticed the signs.

“You would do things that made no sense,” she explained to Barbara. “You came to my classroom one day and said, ‘Come out and look at what I bought.’ And you just went and bought a car at Joplin of all places.”

Another day, Terri said, Barbara visited her classroom to inform her of another sudden purchase — a new house.

That’s when she started paying attention to the signs, Terri said.

Barbara would buy a lot of items she’d forgotten she already had, such as peanut butter: At one point, she had around nine jars of peanut butter, Terri noted.

Barbara Riley

Barbara holds out her wrist, bearing a bracelet that displays information for first responders to identify her.

“So then I thought, ‘Something’s not right,’” she said.

Her suspicion was confirmed when, in 2015, Terri accompanied Barbara to her yearly physical appointment at the hospital. 

Barbara was given a memory test at the beginning of the appointment. She was prompted three words to memorize and recall, but by the end of the appointment, she couldn’t remember them all. 

“It was those three words in the doctor’s office,” Terri said, speaking to her mother. “Yellow, park and duck were the words. … When it was over, you could only remember the word ‘duck.’ You couldn’t remember the word ‘yellow’ and the word ‘park.’” 

“I don’t remember being there, either,” Barbara joked. 

Regarding her day-to-day memory now, Barbara can’t remember if she’s eaten food or not, Terri said. But she can remember certain subjects, and she keeps on that subject all day long — especially regarding schedule changes, which are hard for her to cope with. 

Besides memory loss, though, Alzheimer’s comes with many other symptoms, especially anxiety.

During the interview, Barbara began itching her hands. Terri left the room and came back with anxiety medication and cream for Barbara’s skin.

When Barbara had her first anxiety attacks, she would fall to the floor, Terri described.  

“At first, we thought she was having heart problems — but they were anxiety attacks,” Terri said, thinking back. “By taking this medication, it just calms her nerves and helps her cope with change, and you know, just because we’ve had a tiny bit of change for today, she’s itchy.”

Overall, though, Terry said she didn’t want to sound like the disease makes things “not worthwhile.”

“We have fun, we do things, we laugh, we watch movies, we sometimes go places if I can talk you into it,” Terri said to Barbara. “But 20 minutes later, she won’t remember it.”

That’s kind of hard, she said, but that’s just the stage of Alzheimer’s Barbara is experiencing.

‘Confused, lost and lonely’

With Alzheimer’s disease comes loneliness, Terri said. People stop visiting and calling. 

“They don’t know what to do or say around you, I guess,” Barbara said. 

Terri explained people who’ve known her mother more than her will visit their home and talk to Terri, addressing questions toward her — not Barbara — and avoid eye-contact with Barbara, as well.

When dealing with someone who has Alzheimer’s, Terri said, it’s important to talk slowly, have fewer conversations and people in the room and adhere to a rigid schedule because change is difficult.

Because of the difficulties, Barbara copes by living at home with Terri, where she said she feels comfortable, and working on word-puzzles. 

“I do all kinds of word books,” Barbara said. “It keeps me busy.”

Working on word books also helps her cognitive health, Terri noted. 

Additionally, Barbara keeps her hands busy by handling objects, such as rubber balls and stones. Eventually, when her disease progresses further, Terri will pull out a “fidget quilt” that’s tucked away in her closet for Barbara to use.

Barbara had created the quilt for Terri’s son when he was a baby, and Terri recently added on the fidget devices.

Barbara Riley and her fidget quilt

Barbara holds her fidget quilt. She quilted the blanket for her grandson, Terri’s son, when he was a baby. Terri has since added on fidget devices for Barbara to use as a coping mechanism. 

 

“There are so many things that are coming — that we both know are coming — and I’m just getting prepared for those,” Terri said, referring to the quilt.

Her ultimate goal is for Barbara to stay at home through the end. 

“Knowing from what I knew based on what I do going to the nursing home … Yes, it’s loving and they’re good to their residents, but the residents are confused, lost and lonely,” Terri said. 

Being a caretaker, Terri admitted, is not an easy task. 

“It’s very difficult,” she said. “It comes with much sacrifice, but there’s no question I wouldn’t do anything differently.” 

Terri said there are days she’s failed as Barbara’s caregiver; sometimes, she can feel frustrated after answering a question 30 times, but she’s learning as she goes, and they always hug it out, she said.

The only difference is how Barbara will forget Terri’s occasional frustration after 20 minutes, but Terri never forgets, she said.

‘Your home, regardless’  

While Barbara was adamant during the interview that she be sent to a nursing home after she reaches a point when she roams outside of the home like Darrell, Terri simply stuck to her guns.

“I said to Mom, ‘Here’s the deal,’” Terri explained. “‘Yes, you’re going to lose your entire mind. We get that. But, you’re gonna know — even when you don’t know who we are  — that we love you. And you’re going to know that you’re in your safety and security of your home, regardless.” 

In the future, Terri said, she plans to hire a full-time caretaker to assist Barbara at their home. But until then, she will continue to take care of her mother and run her bakery business, 34:8 Take ’n Bake, in her basement’s kitchen.  

Cooking is therapeutic for her, she said. She turns on the radio and sings as she works. 

And Barbara, too, isn’t afraid of the future. She said she understands she will forget everything.

“I don’t really have a lot of fears because I’ve seen it, and I’ve gone through it,” Barbara said. “I know exactly what’s coming.”

Terri said it’s a journey they’re both committed to completing. 

“And we’re gonna do it with grace. You can live with Alzheimer’s and still live. That’s what people need to know,” Terri said.

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