Parenting a parent: a daughter reflects on mother’s Alzheimer’s disease

By: Olivia Mohr

Cameron Lebedinsky remembers the first time she started to become concerned about her mother’s memory. She was at her mother’s house on Pepperidge Drive in Bowling Green, Kentucky, sometime between 2007 and 2008. Her mother, Winkie Huddleston, took Cameron to her backyard garden area to show her a new bench she had bought. Then, five or 10 minutes later, Winkie asked Cameron again if she wanted to see the bench.

“My heart just sunk at that moment,” Cameron said.

Winkie was diagnosed with Alzheimer’s disease during the fall of 2008 at age 65 and had been showing signs of memory loss for about a year or two. She is now 75. Cameron was 35 when Winkie was diagnosed; she is now 45. She said she stepped in and acted as a caregiver “basically playing the role of parent” to her mother by managing her finances and making sure she was taken care of. Cameron, who is a personal finance freelance journalist working as a columnist for California-based GOBankingRates, is now writing a book about finances, which also will talk about the importance of having conversations with one’s parents, even if they do not have Alzheimer’s disease or any other form of dementia, about finances and long-term care while they are still young and healthy.

According to the Centers for Disease Control and Prevention, Alzheimer’s disease is a form of dementia that affects about 5.4 million Americans. It is the sixth leading cause of death among adults and fifth for adults 65 and older. The causes of Alzheimer’s and other forms of dementia are not fully understood, but researchers suspect it is due to environmental, genetic and lifestyle factors. In 90 percent of people diagnosed with Alzheimer’s, symptoms do not appear until after age 60.

Alzheimer’s disease causes a slow, progressive cognitive decline, causing memory loss, difficulty communicating, behavioral problems including depression and agitation, loss of ability to care for oneself and a decline in decision-making ability, according to the Centers for Disease Control and Prevention.

According to the Alzheimer’s Association, though diagnosis of Alzheimer’s consists of thorough evaluation that can provide a diagnosis with up to 90 percent accuracy, the only way to know with absolute certainty whether an individual has Alzheimer’s is by examining brain tissue at autopsy.

Fading away

Before Cameron and Alex and their children moved to Main Street in 2006, they lived across the street from Winkie on Pepperidge Drive. In the year or two prior to Winkie’s diagnosis, she was in the early stages of Alzheimer’s and was having trouble with her short-term memory.

Cameron’s middle child Zoe, who is now 11 years old, turned two in July 2008, shortly before Winkie was diagnosed. Winkie was at the birthday party that Cameron and her husband, Alex Lebedinsky, threw for Zoe. But after Cameron and her family went out of town, they returned in August to find a “Happy Birthday, Zoe” sign that Winkie had hung on the door.  Cameron remembered that she and Alex both gasped. Winkie had forgotten she had gone to Zoe’s birthday party, and the date was way off. For Cameron, the incident was a “big red flag.” Winkie was starting to forget bigger things, and Cameron knew she had to get more involved, but she was uncomfortable approaching Winkie about it at first.

“She was my mom, so I didn’t want to push too hard,” Cameron said. “I certainly didn’t want to make her feel uncomfortable.”

Though Cameron felt as if she had to “tread very lightly” at first in approaching Winkie about needing to step in, she said she knew she had to do it and did so willingly. Winkie and Cameron’s father divorced in the 1990’s. Cameron’s father died of a heart attack in 2001, and Winkie’s two older brothers are dead. Though her younger brother is still living and lives in Nashville, Tennessee, where Winkie is from, Cameron became Winkie’s “sole caregiver.”

“There was never any doubt in my mind that I was going to be the one to take care of her,” Cameron said.

When Cameron lived across the street from Winkie before she was diagnosed, she frequently checked in on her, and she began to notice Winkie wasn’t as organized. In Winkie’s cabinets and refrigerator, she would see a lot of the same items, like three boxes of oatmeal or three bottles of salad dressing, and expired food items.

Cameron said piles of mail stacked up around Winkie’s house, including a lot of letters from charitable organizations or ones that “claimed to be” charitable. Cameron said Winkie had clearly been giving money to the organizations and that she felt they were taking advantage of Winkie as she was getting older and was starting to lose her memory and decision-making ability.

“I knew I had to really get involved with her finances,” she said.

 Stepping in

Cameron got power of attorney and health care power of attorney for Winkie in 2008, the same year Winkie got diagnosed with Alzheimer’s disease, and she updated legal documents. Cameron made sure it was done as soon as possible, while Winkie was still considered mentally competent enough to designate Cameron as power of attorney and healthcare power of attorney, so she could make financial and healthcare decisions for her. She also went to the bank to get put on Winkie’s account as a representative payee, which gave her access to Winkie’s bank accounts.

One of the first things Cameron had to do was step in and tell Winkie what needed to be done financially, like telling her she didn’t need so many credit cards, in order to make it easier to pay bills and keep track of spending. Telling her own mother how to spend her money was uncomfortable for her, and she found those “day-to-day” things more difficult to talk about with Winkie than talking about power of attorney and healthcare power of attorney was.

“The more day-to-day stuff that I had to get involved with – that was harder because that was me being a child again, having to say to a parent ‘I don’t think you’re capable of making these decisions on your own,’ and that has been one of the hardest things, is kind of being a parent to my parent,” she said.

When Winkie began having trouble driving – she would get confused and forget where she was and where she was going – Cameron had to talk to her about taking away her car keys.

Cameron reminded Winkie of a story from her childhood to make her more comfortable with the idea. When Cameron and her younger sister Robin were children, they were with their family in Nashville while Winkie’s mother was in the hospital. Winkie left Cameron and Robin with her father, who had dementia, and warned them not to get in the car with him because he often wandered and forgot where he was going. However, he wanted to go for a ride, and Cameron and Robin went along and rode around town with him. After Cameron reminded Winkie of the story, Winkie was willing to give up her car keys.

In 2010, Cameron had to make the decision to sell Winkie’s house, where she had lived for for more than a decade, and move her in with her family on Main Street to live in an apartment above them in their house.

“Talking her into moving out of her house was incredibly difficult because she didn’t want to let go of something that was hers that she had worked really hard into,” she said.

Cameron said Winkie loved all the “beautiful things” in her home and that she loved her garden, and she hated taking those things away from her. However, she knew she had to keep a close eye on Winkie to make sure she was taking her medications and paying her bills.

“Taking that away from her was incredibly difficult for me,” she said. “I’m sure she probably resented me for it, but I knew that taking care of her house on her own was too much for her.”

Cameron said Winkie transitioned well. She said Winkie brought her dog to the apartment with her, Cameron told her she could work in her garden as much as she wanted, and Cameron laughed as she recalled that Winkie ended up “kind of adopting” one of Cameron’s cats. The cat had been living outside because Maya and Zoe were small children at the time, so Winkie brought the cat into her apartment.

Though Winkie made a smooth transition, Cameron said the two years during which Winkie lived with them was stressful as she balanced a full-time job, caring for two young children and taking care of Winkie.

Cameron hired an aide from Home Instead, which provides in-home senior care services, to stay with Winkie on weekdays during Cameron’s work hours. Cameron has worked from home full-time as a freelance journalist since 2003.

Cameron’s first reporting job was with the Bowling Green Daily News in 1995. She moved to Washington, D.C., in 1997 and worked for several publications including Dow Jones Newswires, which was her introduction to business journalism, covering bond markets. She then started working for Kiplinger’s website, Kiplinger.com, as a full-time employee in 2001. It was her first time writing about personal finance, and she said she learned on the job. She moved back to Bowling Green in the summer of 2003 and started working as a contributing editor for Kiplinger then, and she started working for GOBankingRates in 2015. Though she is a freelancer now, she works solely for GOBankingRates as a columnist, under her maiden name as her byline, Cameron Huddleston.

In the two years Winkie lived with Cameron and her family, Cameron checked in on Winkie each morning to make sure she had eaten her breakfast and give her medicine, and she often spent time with her during the afternoons and fed her dinner each night. Cameron said Winkie would often come downstairs from her apartment in a panic about something, and Cameron would have to drop everything she was doing – often an interview or a phone call – and help Winkie, which was stressful.

“And that stress ends up coming out on the people around you – your kids, your spouse – and I hated that,” she said.

Because she had to give so much attention to her mother and to her job, Cameron felt that she wasn’t giving enough time to her children.

“I certainly felt like there were plenty of days, by the end of the day, that I hardly had the energy to be as good of a mom as I wanted to be,” she said.

Because individuals with Alzheimer’s often experience disrupted sleep patterns and feel restless and wander at night, according to the Alzheimer’s Association, Cameron and Alex often heard Winkie in the middle of the night because her apartment was above them, and Cameron was afraid that Winkie would fall or wander off.

Cameron recalled an incident when Winkie was living with her and her family on Main Street that was “incredibly scary” for her. Cameron had family over at her house, and Winkie took Cameron’s cousin and his wife upstairs to see her apartment, where they discovered Winkie had left a tea kettle on the stove for a long time because she had forgotten about it. Cameron started to realize that she not only had to protect her mother, but also the rest of her family – Winkie could have accidentally left the stove on and burned the house down.

After the incident, Cameron’s cousin and his wife bought Winkie an electric tea kettle that shut off automatically for Christmas, and Cameron and Alex began having “serious conversations” because it was becoming a risk to have Winkie in the apartment above them.

Cameron began talking to Winkie about moving her into a memory care facility when she realized Winkie needed a more intensive level of care than what she could provide.

After doing research on different facilities, Cameron moved Winkie to a memory care facility in Nashville in 2012 because there were no facilities specifically for memory care in Bowling Green at that time.

“That was a very difficult decision,” she said. “I hated to have to make it, but I knew that I alone, along with caregivers who were coming for a few hours during the day – that was not enough.”

In speaking to Winkie about moving her into a facility and in the process of moving her, Cameron felt guilty because Winkie forgot every conversation they had.

“I felt as I was moving her that, in a way, I felt a little bit like I was tricking her because I was taking her into a situation that she was not aware that she was going into,” Cameron said. “Even though I had discussed with her that she was going to be moving, she did not remember those conversations.”

Along with Alex and her sister Robin, Cameron moved Winkie into the facility in Nashville, where she said the staff were good to Winkie. Cameron felt relieved that her mother was receiving the care she needed, and she and her family visited Winkie in Nashville once or twice a month.

“At that point, it was when I was able to be her daughter again and not her caregiver, so those interactions were pretty stress-free,” she said.

In Nashville

After two years living at the memory care facility in Nashville, Winkie had to go to the hospital three times. The first time was in 2014. She was showering and hit her head and was sent to the emergency room. Cameron dropped everything she was doing and made the trip from Bowling Green to Nashville to stay with Winkie at the hospital.

The second time, Winkie’s blood pressure spiked, and her time at the hospital didn’t go well. Cameron said Winkie was confused and lashed out at the doctors and nurses because she didn’t know what was going on, so they had to sedate her to keep her calm. Cameron had gotten a call and gone to Nashville right away. When doctors and nurses told Cameron that Winkie had become violent, Cameron said she felt upset because she said it wasn’t like Winkie to become violent. She described Winkie as “easygoing,” even now.

“It just crushed me,” she said.

The third time Winkie went to the hospital was after she fractured her hip in August 2015 after falling during the night. It was Cameron’s children’s first day of school. Cameron got a call about Winkie’s accident early in the morning, and she dropped her children off at school and drove to Nashville. She spent the rest of the day and the night there, while Winkie was taken into surgery and after the surgery was performed. After the surgery, Winkie was moved into a nursing home, and Cameron said she was worried it would be a disaster.

“How can you tell someone who can’t remember what you said a minute ago that [they] have fractured [their] hip?” Cameron said.

Though Cameron was initially worried, Winkie was only in the nursing home for a week, and she “bounced back” physically. However, Cameron said there was a noticeable decline in her mental ability.

Winkie was given anesthesia, and, according to the National Center for Biotechnology Information, people with Alzheimer’s “are considered to be particularly at risk for some of the cognitive side effects of anesthesia,” and symptoms can persist for months or years after general anesthesia.

During the six months following her surgery, Winkie was withdrawn and “often didn’t recognize” Cameron.

During Thanksgiving that year at Cameron’s uncle’s house, Cameron stood outside with her cousin’s husband while her children and his children ran around and played. Winkie was there, and Cameron was calling her “mom” when Winkie turned to her and said, “I’m not your mom.”

“That was certainly really hard – when she was like ‘I’m not your mom,’” Cameron said.

After six months passed after Winkie’s surgery, Cameron said “it was like a switch had been flipped.” Winkie’s “cheerful personality” returned and she was able to recognize Cameron again – for a while. That ended by mid-2016, when Cameron said Winkie could no longer recognize her. That was also the year during which Cameron moved Winkie back to Bowling Green to live at Chandler Memory Care, a memory care facility that opened in February 2014.

Cameron Lebedinsky reaches for the door at Chandler Memory Care, a memory care facility located at 1310 Campbell Lane in Bowling Green, Kentucky, to visit her mother, Winkie Huddleston, who resides there.

Reflections

At Chandler Memory Care in April 2018, Winkie sat at a dark wooden table in the dining room. Graham crackers and part of a banana sat on a paper plate in front of her. Cameron bent her knees to get ear-level to Winkie so she could hear her. Cameron said that though Winkie is difficult to hear and not much of what she says makes sense anymore, when she visits Winkie, she just sits and listens. As Winkie rambled on quietly, Cameron smiled and repeated Winkie’s words back to her.

Winkie reached out to touch the yellow and white fake flowers that were the centerpiece at the table, and Cameron explained that often Winkie will find leaves and flowers outside and take them back to her room in the facility because she has always loved plants and flowers.

Cameron peeled the banana for Winkie. She said Winkie will often play with her food or push it around on her plate, and that she wondered if she would eat the graham crackers. She broke the graham crackers up for Winkie, took a bite of one herself and explained to Winkie that she could eat them.

Cameron said she now refers to her mother as “Winkie” and tries not to call her “mom” so as not to confuse her, but every now and then, she calls her “mom.” When she visits Winkie, she doesn’t give her hugs because she doesn’t want to startle her. Instead, she’ll give her a pat on the back.

“To her, I’m a stranger now,” Cameron said.

Tammy Curtis, 44, is the residence service director at Chandler Memory Care. She supervises the staff there, coordinates care, helps with activities and works one-on-one with residents. Curtis also acts as a liaison between third-party agencies that come to the facility to provide physical therapy, speech therapy and other services because, since it is a non-medical facility, Chandler Memory Care cannot provide those services itself. She has worked with Winkie one-on-one and often sees Cameron and Winkie interact when Cameron visits, and she said Cameron often comes with her children. Curtis said Cameron is patient and loving with Winkie.

“Cameron is very loving and tender and gentle with Winkie,” she said. “She stays on top of her supplies. She’s very busy – she’s got kids, she’s got work – but she absolutely gets here at least a couple times a week and makes some time for her, especially bringing the kids and trying to help them have that memory, making moments for her. Because that’s what I say here – we’re making moments. We can’t make memories anymore, but we’re going to make moments, and that’s what she does. She does a great job. You can tell that she loves her mother very much. She does make sure that she’s getting the best care.”

Cameron no longer lives on Main Street. In her current house, which is in a rural area near Barren Rivershe stood in the doorway of her office and said Winkie had never visited her current house, but that “there is so much of her in it.”

After Cameron moved Winkie out of her own house, she and Alex had to sell or donate many of Winkie’s belongings. But Cameron kept many of Winkie’s things. In Cameron’s office, several of Winkie’s old photos hang on the walls – Winkie when she was in high school, Winkie when she was traveling in Europe, Winkie’s wedding when she married Cameron’s father, Winkie with Cameron and Robin when they were children.

As she stood in the doorway of her office, Cameron said Winkie, who used to be a preschool teacher, had loved children, had been creative and had beautiful belongings. She said it saddened her to think that Winkie would have made a “great grandmother” to her children: Maya, 13, Zoe, 11, and Alexander, six.

“My mom had great taste,” Cameron said with a laugh. “You know, she really did, and I think she rubbed off on me in a lot of ways. She was very artistic and creative, and I feel like I have some of that. I see it in my kids too, and that’s one of the things that just crushes me – that she would have been such a great grandmother and would have sat down with them and done all sorts of cool art projects, because I know she did with the preschool kids she worked with, and they loved her. Those kids loved her, and they got an experience that my kids just don’t have.”

Cameron spoke about Winkie’s creativity and how her ability to draw, paint and create other artwork has declined over the years.

“Something that she loved – she can’t do it anymore,” she said.

Two pieces of Winkie Huddleston’s artwork. She painted one (left) in 2012 and painted the other (right) later. “You can track her mental decline in her artwork,” Winkie’s daughter, Cameron Lebedinsky, said. “Like, you can see clearly how she lost her ability to draw and to paint.”

She said watching Winkie’s decline has been painful for her as she has lost her ability to do what she loved and has lost her ability to recognize Cameron, Cameron’s children and husband, and her other family members. Winkie can still feed herself and walk around, but much of her mental ability has deteriorated, and she has to be assisted with bathing, using the bathroom and performing other tasks.

Cameron said she believes that Alzheimer’s is even more difficult for the loved ones of people with Alzheimer’s than for people with Alzheimer’s themselves.

“Because you’re watching someone you love deteriorate, and there’s nothing you can do to help them,” she said. “There’s nothing, and the worst part is you can’t even explain to them what’s going wrong.”

Though Winkie no longer recognizes Cameron, she still remembers that she lives in Bowling Green, that her name is Winkie, that she was born in Nashville, that she went to college in New Orleans and the name of Cameron’s father – and that she has a daughter named Cameron. Cameron said that “if you press her,” she can also occasionally remember that she has a daughter named Robin. She forgot Robin before she forgot Cameron because Robin lives in Albuquerque, New Mexico.

It pains Cameron that Winkie says she remembers that she has a daughter named Cameron, but that she can’t recognize Cameron when she sees her.

“She just doesn’t know that I am that daughter, and, you know, it just kills me when I hear her saying that,” Cameron said. “I’m like ‘Well, Mom, it’s me. I’m Cameron.’”

Cameron Lebedinsky holds up a coloring sheet and shows the back of the sheet on which her mother, Winkie Huddleston, wrote a note that begins “Dear Cameron.” Underneath Winkie’s note, an activities director who works at Chandler Memory Care wrote, “Unprompted, Winkie was sitting down to color and then turned the page over to write this note. Although it might not make complete sense to me, I just wanted to let you know she was thinking of you.” The activities director mailed the coloring sheet to Cameron. “I kinda love it,” Cameron said.

Looking forward

In dealing with Winkie’s Alzheimer’s disease and in balancing work and children, Cameron said she does not believe she gives herself enough time to focus on her own mental health.

When Cameron and Robin speak to each other over the phone, Cameron said Robin often asks how she is doing, and she often tries to change the subject because she believes she isn’t doing enough to take care of herself.

“I change the subject right away because I’m not doing anything, and I know that’s not healthy,” Cameron said.

Robin, 43, is a social worker and an adjunct faculty member at a university in Albuquerque, and she teaches social workers. She asked her last name not be published for privacy reasons. She said she believes Cameron has an enormous amount of “stamina,” and that Cameron has grown throughout the experience with Winkie.

“I think the way Alzheimer’s affects families depends on the family itself,” Robin said. “I think Cameron has grown tremendously as a person, and she has, for the first time since I’ve known her, really become who she is. We all wear masks in different areas of our lives. We all fill roles. But she’s actually become who she is, and it’s a really beautiful person, and it’s really been amazing to see that. Because she had to face mortality. She had to face what it is to care for somebody who needed her in a different way, and to watch that deterioration of someone that you love – that’s really hard to do.”

Robin said she does not understand how Cameron does what she does in balancing Winkie, a full-time job and three children, but that she trusts Cameron is taking on what she can handle.

“I have no idea how my sister has the ability to do what she does, but I trust that if she’s doing it, she wants to do it, she keeps doing it, she’s not asking for help, she’s not asking for help from anyone – then that is a choice that I need to respect, and the second that she asks for help, I’m going to do everything I can to get her the resources that she needs,” she said.

Cameron said if she is lucky, she’ll find time to take a walk, and she is in a book club, which she says is “a little bit like therapy” and “a nice outlet.” However, she said she often doesn’t have much time for herself.

Alex, 43, is a professor at Western Kentucky University and will be the department head of the economics department starting July 1. He said he has tried to support and help Cameron in any way he can.

He said he tries to encourage Cameron to take time for herself, but that Cameron has little time to do so.

“I can encourage all I want, but there’s only 24 hours in a day,” he said.

Alex said he tries to provide support by doing chores. He helped put Winkie’s house on the market and helped go through Winkie’s belongings, take care of Winkie’s yard and paint Winkie’s house once he and Cameron put it up for sale, he drove Cameron and their children to Nashville when Winkie was at the facility there, and he said he tries to give the emotional support that he can, giving Cameron a hug at the end of a difficult day and listening to her.

“Sometimes I think it takes a lot less than people think to give emotional support,” he said. “Just sometimes listening is enough.”

Though Winkie’s Alzheimer’s has been a source of pain for Cameron, she said she tries not to focus on the negative.

“I just try to get through each day and hold it all together and try to stay positive,” she said.

In her experience, she said trying to maintain a “good sense of humor” has been important in coping with Winkie’s decline.

She laughed as she recalled that at the facility in Nashville, Winkie had a purse that she carried around with her all the time that was full of all sorts of things. Cameron and Maya were sitting with Winkie one day, and Winkie started pulling items out of the purse – a package of crackers, a sock, tissues, colored pencils, markers, pens – and they “couldn’t help but laugh at the randomness of these items in her purse.”

Cameron is also thankful for the support she has received, “especially from” Alex, and she said it is a relief knowing people are taking care of Winkie around the clock at Chandler Memory Care.

Though she is no longer taking care of Winkie directly, she said she still has to be involved. She still manages Winkie’s financial life – she fills out her taxes and makes sure her assisted living bills are paid – and she also manages her Medicare and takes her to the doctor when needed. She said she is thankful for her knowledge of personal finance, without which she said things would have been much more difficult.

“I’m really glad I had that background, because if I didn’t know anything about managing money, it would have been a lot harder for me,” she said. “I would have made a lot more mistakes than I did.”

Because Winkie’s father had dementia and Winkie was diagnosed with Alzheimer’s, Cameron fears that dementia might run in her family and fears that she might develop it herself.

“It has me worried,” Cameron said. “Any time I can’t remember something now, I feel that panic, like ‘oh, my gosh. Am I starting to lose my memory? Am I destined to end up with Alzheimer’s or dementia like my mother, at a relatively young age?’ I mean, it terrifies me, the thought.”

In May, Cameron signed a contract with the publishing company Wiley to publish a book. The book’s tentative title is “Mom and Dad, We Need to Talk; How to Have Essential Conversations with Your Parents About Their Finances.” Cameron’s deadline to submit the manuscript is January 2019 with a publish date later that year. Cameron said the book is not focused solely on helping parents diagnosed with Alzheimer’s, but aims to guide readers in talking to their parents about if they want long-term care, how they plan to pay for it, how they stand financially and their final wishes. In the past, she has written several articles about talking to one’s parents about finances and about her own experiences with her mother.

Cameron is also a member of the Alzheimer’s Congressional Team through the Alzheimer’s Association, which advocates for funding for Alzheimer’s research. She attended a meeting at Congressman Brett Guthrie’s office April 26, during which she and the rest of the team asked for Guthrie’s support for the Building Our Largest Dementia (BOLD) Infrastructure for Alzheimer’s Act, which would spread awareness about and help provide funding for Alzheimer’s research.

Cameron also did the Walk to End Alzheimer’s through the Alzheimer’s Association, the world’s largest event to spread awareness about Alzheimer’s and raise funds for research, once with her children.

When Cameron visits Winkie, she often just sits and listens, even though Winkie doesn’t recognize her.

“At this point, that’s the best I can do,” Cameron said. “I can’t have a relationship with her other than just kind of being there and supporting her.”

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