As Patti LaFleur glanced over at her mom, Linda LaTurner, riding on the carousel at Disneyland, LaFleur felt thrilled by how happy her mom looked. LaTurner had dementia, and as her caregiver, LaFleur focused on living in the moment so her mom could love life and LaFleur would have lasting memories.
“Her joy on the carousel, looking around at the kids,” LaFleur, 36, of Seattle, told TODAY. “That moment will always live in my heart.”
When LaTurner stopped paying her bills on time, seemed less social and forgot to take insulin for her Type 1 diabetes, LaFleur’s family worried that was something wrong. After a visit to a doctor in 2015, they learned that Linda had mixed dementia. Five years later, LaTurner moved in with LaFleur and she became her caregiver — something that LaFleur saw at as a chance to show her mom unconditional love.
“I was adopted and so she really allowed for me to have a beautiful, wonderful life and so I really knew the time that I got to spend with her and have her in my home was an opportunity,” LaFleur explained. “It is why I became so focused on creating such beautiful memories and really thinking about how we could connect.” LaFleur focused on the two living “in the moment together.” So she traveled with LaTurner, including the memorable trip to Disneyland. She knew her mom might not remember what they did but she focused on making the best of each day.
“We just really created experiences — that although she wasn’t going to remember — that she was going to enjoy in the moment,” she said. “That really helped me even slow down and think about I don’t need to worry about what’s coming next in my mom’s dementia progression but really what is happening right now and how can we connect in this moment.”
When LaTurner felt frustrated or angry and experienced a tough day, LaFleur met her with empathy and kindness.
“One of the biggest things that I just always kept in mind is that my mom wasn’t giving me a hard time — she was having a hard time … I was able to compartmentalize it to think about how it was the disease that was talking,” she said. “It was the dementia that was causing these changes.”
That meant LaFleur often needed to be flexible. When she realized LaTurner was experiencing sundowning — increased confusion, irritability and restlessness that begins in late afternoon, according to the National Institute on Aging —LaFleur adjusted how they spent the nights to meet her mom’s needs. LaTurner had a robotic dog from Joy for All Companion Pets, so the two snuggled their dogs while watching movies about dogs or TV.
“I was just really thinking about how I could change the environment to best support her,” she said. “It was less about going and doing things and being really active in the evening to really thinking about how we could create a safe, warm environment.”
While LaFleur focused to how to best help her mom, it still felt tough at times. She had to watch as LaTurner slowly lost her memory.
“She didn’t identify me as her daughter. She didn’t identify me by my name. She called me her really good friend,” LaFleur said. “Those parts are sad, and I was grieving her while she was still alive. But what was really sad was knowing that she was losing pieces of herself.”
LaTurner not being able to recognize LaFleur and her sister felt particularly difficult to them because Linda always wanted to be a mom.
“Me and my sister were her pride and joy and things that were really important to her,” LaFleur said. “The fact that my mom didn’t know she had daughters was even more heartbreaking than her not being able to identify me as her daughter.”
Still, LaFleur tried to nurture her mom’s interests. LaTurner crocheted and quilted, but as her dementia progressed, she couldn’t enjoy these activities. Instead, LaFleur signed her up for an online art therapy class to allow her to continue to be creative.
“I really thought about how I could create other artistic, crafty experiences for her that allowed the creative side of her brain to continue to be active,” she said.
Enjoying time together helped LaFleur grapple with the grief she experienced while watching Linda’s dementia progress.
“We were having so much fun, like we were laughing together. We were dancing. She was in an art class. She was in a music class,” she said. “Because we were trying to live such a joyful life together, it didn’t allow me the same amount of time to be grieving or worried or concerned about what was coming next.”
That didn’t mean that LaFleur didn’t experience sadness or even feel burned out at times.
“There were times especially when she was really severely sundowning and she was uncontrollable that I was grieving. That it was hard and sad,” she said. “My focus on the moment and really remembering that she is doing the best she can (helped).”
She also engaged in respite care where someone would care for LaTurner while LaFleur took a break. Caring for herself helped her to be more present for her mom when she was there. Soon after LaFleur and LaTurner visited Disneyland in February 2022, LaTurner became sick with colitis. She recovered but still didn’t feel well so she went to the hospital where she went into ketoacidosis, a complication caused by diabetes. While she improved enough to come home, LaFleur “noticed she was not herself” and she reached out to hospice.
“She wasn’t smiling as much and so I decided to call hospice to see if she was ready. I didn’t actually think she was ready,” she recalled. “She qualified for hospice on Thursday and on that Saturday, she started active dying process.”
On March 28, 2022, LaTurner died. LaFleur is still processing her grief, which she realizes will be with her for life. She had started sharing what she was doing with LaTurner on her social media accounts, mostly because her mom was just more present in her life. But that gave her a chance to change how people look at caregiving, too. While she doesn’t know what the future holds, she anticipates advocating for caregivers and changing how people think of dementia.
“The biggest reason that I share our story is to really change the stigma around dementia and Alzheimer’s. If you hear the word dementia or Alzheimer’s, you have an image in your mind, and typically, it’s not super positive,” she said. “It’s really powerful for people to see that someone can thrive living with dementia.”
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