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Living with Alzheimer's: Her turn to care for Mom

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By Meaghan Downs

Doris is searching for her children.
A baby doll is usually the only thing that will console her when she’s in the hospital, daughter Debbie Lottes said.
Doris Halwes of Evansville, Ind. — former Girl Scout leader, Sunday school teacher and creative, thrifty stay-at-home mom — expects to see her two kids or grandchildren always running underfoot.
Doris asks for them. She forgets. She asks again.
She searches, always.
“She’s always hunting for her children,” Debbie, the 85 year old’s only daughter, said. “She hunts for kids.”
Before being diagnosed with Alzheimer’s, her mother didn’t mind corralling three young children, Debbie said.
Doris would let Debbie’s girls borrow her jewelry, play dress up, get dirty outside or get messy with art.
Driving into Frankfort to pick up her mother on a sunny winter afternoon, Debbie said she likes to remember her mom the way she was before she started calling out for her children, before Doris forgot what her fingers were, before she started garbling her sentences and forgetting what words to use with nail polish on your purple car.
“My mom was the one who would turn on music and get fingers snapping, dancing,” Debbie said. “That’s the mom I remember.”
More than 97,000 men and women ages 65 to 85 and older will have been diagnosed with Alzheimer’s in Kentucky by 2025, according to the Alzheimer’s Association.
By 2012 more than 266,000 people in Kentucky served as caregivers — like Debbie and her older brother Steve — for parents or relatives with Alzheimer’s and will spend more than $152 million on the higher health costs of care giving.
Debbie said she is down to her parents’ last $20,000, savings her parents worked hard to earn during their entire lives.
The director of the Anderson Senior Center, Debbie said she’s known what to expect with all the other stages of care giving for an elderly parent given what’s she’s learned through her position at the center.
Except this next step, the one where Debbie takes her mother — the woman who knew how to stand up for herself, who teased and hugged, who transformed a meal from nothing into something — and moves her to a nursing home.
Debbie said she never promised her mother she wouldn’t consider nursing home care, but the decision still causes a tremendous amount of anxiety for Debbie, just as it does for many people Debbie said she interacts with at the senior center.
Debbie hopes to move her mom to a Lawrenceburg facility soon, maybe by mid-March.
Often, there are waiting lists and application standards for nursing home care, she said.
That doesn’t make the decision any easier, just like the decision to move her mom away from Evansville, Ind.
“Of course she wouldn’t want to come up here, away from the people she’s lived with all of her life,” Debbie said. “It’s been a good choice and it’s kept her so safe.”
Debbie estimates she and her brother, Steve, have spent $200,000 of her parents’ savings on taking care of mom since Doris first started showing signs of Alzheimer’s about eight to nine years ago.
The death of Debbie’s father, Ralph, opened her eyes to some of her mom’s strange behavior, Debbie said.
Doris, who had lived in Evansville with her husband for more than 50 years, once showed up for church on a Wednesday at 6 a.m. wearing odd clothes.
“He apparently served as the brains to keep her on track,” Debbie said of her father.
Debbie’s brother Steve, who worked swing shifts at Alcoa in Evansville, took over the primary care of their mother for a few years.
He and Debbie used to trade weekends. Debbie would drive from Frankfort to Evansville every other weekend trying to help with groceries and cleaning, and Steve coordinated a rotation of six people checking in on Doris.  
But it soon became too expensive to let Doris stay in the Evansville home where she raised her children, the ones she’s still looking for.
Debbie said when she first moved her mom to Kentucky about two and half years ago, she was afraid Doris would notice and it’d be a hard adjustment.
But Doris has adapted well to the move, she said.
Doris often doesn’t know where she is, but then again, she often didn’t know she was in Evansville.
“It wasn’t the home she remembered in her mind,” Debbie said. “She’s way in the past.”
Doris’ Frankfort caregiver, Judy, warns Debbie as soon as she steps through the door of Judy’s Frankfort home that Wednesday afternoon in January.
“It’s been a really rough day,” Judy tells Debbie.
A symptom of manic behavior consistent with advanced Alzheimer’s patients, Doris paces for hours.
Sometimes Doris walks all night.
Doris paces relentlessly for about three days until she crashes, Debbie said, and walking without rest can mess up the kidneys and cause painful swelling.
Doris hasn’t gotten much sleep during this latest manic walking cycle, Debbie said, which may be due to a change in her medication cocktail for her Alzheimer’s as well as diabetes.
Doris’ balance was off that Wednesday, once she’s out of the armchair and her favorite red felt winter hat and gloves are in place.
She can’t remember how to get down the three small steps off the porch to Judy and Sonny’s home.
Her sneakers, the only shoes she’s comfortable in, hover in hesitation over each step.
Walking across dark pavement, Doris is often afraid she may fall through the ground. Lack of depth perception is also a symptom of Alzheimer’s.
“I guess she can’t feel it, nor can she see it,” Debbie said.
Once Doris couldn’t remember what a straw was.
Debbie said she observed her mom hold up her hands, spread her fingers and say, “this is mine” as though learning about her fingers for the very first time.
Doris forgot how to get in the car once, Debbie said with a laugh. She tried to get into the passenger side head first.
Debbie laughs because it’s funny, and that helps. Debbie laughs because it’s sad.
Debbie uses humor because she knows that minute of funny sadness will pass, and another minute will arrive to take its place.
“I guess humor has been the best thing, and to know you’re not going to see that minute,” Debbie explained. “That minute is gone.”
Five months ago, Doris could still finish sentences. Now she guesses what word she thinks she should use.
Debbie said she used to talk to her mom on the phone every day.
Now Debbie and her mother can only have limited conversations such as the one they had on the car ride from Judy and Sonny’s home to Debbie’s.
Doris asked Debbie where her pants were.
“Where is my coat?” Debbie answers. “My coat is in the back seat.”
The sun is setting, and Debbie and Doris are heading to Debbie’s home for dinner.
Debbie and her husband Larry take care of Doris every Sunday and Wednesday night for about four hours to give Doris’ caregivers a break and can go to church.
Her mother stays with her Frankfort caregivers most of the week, and spends every Sunday and every other Saturday with a female caregiver in Lawrenceburg.
After Debbie finishes work for the day on Wednesdays, she locks up and heads to pick up her mom from Judy and Sonny’s.
She thinks about her mom during those car rides, tries to calm down for Doris.
“They may not be able to explain how they feel, but if you rush, rush, rush and hurry, hurry, hurry, it may transfer to her,” she said.
Driving to Debbie’s home, no one’s in a hurry.
“Doesn’t that sunshine feel good?” Debbie asked Doris.
Doris moves her head slightly, possibly in agreement, and turns her face toward the window.
“I’ll have to turn my eyes off,” she replied.

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This story is the first part of a two-part series on Alzheimer’s disease and its emotional, financial and physical toll on caregivers and patients. The second part of Lottes’ and her mother’s story focuses on the difficult financial choices Lottes has made and why she’s considering placing her mother in a nursing home facility.