At left, Betty Lott, 93, visits with her daughter, Deborah Guist, Wednesday at Trinity Healthcare Center in Columbus, where Lott resides. November is National Alzheimer's Disease Awareness Month, designated by President Ronald Reagan in 1983. At the time fewer than two million Americans had Alzheimer's, according to the Alzheimer's Association. Today, that number has soared to almost 5.4 million. Photo by: Deanna Robinson/Dispatch Staff
November 18, 2017 10:35:49 PM
Deborah Guist remembers how the family used to lovingly tease her mother about having "a memory like an elephant." That was before a form of dementia robbed Betty Lott of many of the faces and relationships that made up her past and present. Watching the change in her parent is one of the most difficult things Guist has ever had to accept. She is not alone.
In 2017, an estimated five and a half million Americans are living with Alzheimer's dementia, according to the Alzheimer's Association. More than five million of them are 65 and older. Almost two-thirds are women.
November is Alzheimer's Disease Awareness and Caregivers Month. Alzheimer's is the most common of several types of dementia, a general term for a decline in mental ability severe enough to interfere with daily life. It is devastatingly progressive, and in spite of a worldwide effort, there is currently no cure. That does not mean there is no hope.
Research continues into ways to prevent or delay onset. Medications are available that may treat symptoms and improve quality of life for some affected and their families. There are even lifestyle choices that may reduce a person's risk of having the disease that whittles away at thinking, memory and behavior and first manifests in subtle ways.
"I began seeing, in her 80s, what I know now were signs," Guist said of her parent, who ran a busy dance studio in Columbus for decades.
Early warnings of Alzheimer's can include memory changes that disrupt daily life, difficulty completing familiar tasks, confusion with time or place, new problems with words in speaking or writing, misplacing things or losing the ability to retrace steps, and challenges in planning or solving problems.
Red flags were increasingly visible when Lott came to stay with her daughter after suffering a fall in 2012. Guist and her husband had businesses to run yet still cared for Lott in their home. Within the year, however, it became clear she needed more help than they could provide.
With Lott's consent, the family made the decision for her to enter Trinity Personal Care in Columbus, an assisted living unit. She now lives in the Trinity Healthcare Center.
"It was such a hard thing to actually decide, but we knew it's what had to be," Guist said of her mother's move to a care community. "It's not anything anybody ever wants to have to face, and when I was younger I tended to be very judgemental -- 'Oh my goodness, how could anybody put a parent in a nursing home?' Well, I've been humbled since then."
She now says daily prayers of gratitude for those who watch over her mother, Guist said.
"They're giving her care that there is no way we could have done at home. ... I cannot say enough good about them. They are a Godsend. They are angels, and that gives me a big chunk of peace."
For every family, decisions on managing the evolving transitions are intensely personal ones.
Richard Duggin's late mother did relatively well living on her own for a few years after her husband passed away in 2006. Duggin, who is CFO of Community Counseling Services, visited her every few weeks in Memphis, where she lived near another son. Over time, though, he noticed changes.
"She still had her car and only drove to certain places, but then she got lost one time," said Duggin. "Going to a place she always went to, she couldn't find her way back home."
When the time came, Duggin, his brothers and extended family made arrangements for her to live with one of her children. They shared responsibilities. That's a conversation Duggin recommends having with loved ones while communication is viable.
"My biggest advice to families is that while the individual they're caring for can, talk to them and say if something ever happens, what do they want?" he urged. "They need to talk about nursing home/not nursing home, find out what insurance they have and what it covers, determine who's going to stay with them and who will check on them during the day -- it's one of those things you really have to talk about and plan for."
Caring for someone with memory loss at home can be stressful and isolating. Caregivers must look after themselves as well, Duggin said.
"It's very taxing to deal with 24 hours a day, seven days a week. You need support somehow, whether it's through church members, friends, people you trust to just be able to come in and sit for a while."
The medical community and resources such as the Alzheimer's Association can help meet the challenges. Complete assessment by a physician is important.
Internal Medicine specialist Dr. James Woodard of Columbus is also medical director at Trinity Healthcare.
"If I had a family member that I'm suspicious is on the verge of having dementia, certainly you want to get them in with a doctor because there are medications that can help," he said. "They don't cure it, but they may have the potential to slow it down."
It's important to also check for other conditions that may produce similar symptoms.
"For instance, if someone has a B12 deficiency, or underactive thyroid, that can give you a presentation like dementia," Woodard explained. He's also seen scans of patients who showed evidence of stroke, although the patients were not aware they'd had one.
"And sometimes as folks get older a lot of them are depressed as well, and if you treat that depression, it sometimes makes the situation better," he added.
Alzheimer's and other dementias are still a vast gray area in many ways, and it's important to be proactive, the doctor said.
"The brain is our most important muscle, and just like you exercise other parts of the body, you need to exercise the brain," said Community Counseling Services' Martha Allen, who sometimes presents talks on Alzheimer's disease.
Brain exercise could include learning a new language, reading books, working crossword puzzles or taking continuing education classes. Anything that keeps the mind engaged and challenged can help keep the brain healthy.
Social engagement for people with early memory loss is a good way to stay connected and active. Engage in something creative, be active and explore resources.
Current studies suggest that nutrient-packed foods, physical activity, controlling blood pressure and vascular issues, avoiding head trauma and stress and keeping a regular bedtime may reduce the risk of developing dementia.
Sherry Coughlan, social services director at Trinity, and Melissa Price, activities director, came back with valuable information from the Mississippi Department of Health's annual Alzheimer's conference in Natchez in August. They learned about current research underway at the University of Mississippi Medical Center MIND Center in Jackson (MIND: Memory Impairment and Neurodegenerative Dementia). They also heard from caregivers.
One women, whose husband had dementia, shared that she had had small cards printed up to discreetly give restaurant servers and others they might encounter.
"It introduced them and said 'we are living with forgetfulness' and let (the recipient) know that individual may need assistance with something or that there could be some inappropriateness," said Coughlan. "I thought that was a neat way to let somebody know on the front end to be kind."
As the disease progresses, affected individuals will go through different stages. "Sometimes there's anger, there may be uncooperativeness," Coughlan explained. "You don't correct -- you meet them where they are. Above all, be kind."
Watching a loved one incrementally fade requires a certain strength.
Duggin's mother passed away in 2015. In her final year, she became nonverbal.
"We could look in her eyes and know that that's our mother, and have those feelings we'd always had for her and want them to be reciprocated like they had been all our lives."
Guist is still able to visit her mother, sharing pictures and quiet talk, understanding that some days her parent will be more aware than others.
"She had a very successful business for 52 years. She was the most feisty, independent person I had ever known. ... To see this person that has always been your idol, your hero, and who took care of you, diminished to having to be taken care of is difficult."
She takes comfort in small things.
"Her basic personality is still there. She's still funny," Guist smiled. "At any given time we don't know who she will or won't remember -- but she can sit in that chair and I can ask do you remember this step or this dance, and she can tap out every dance step she's ever done."
The first thing families and individuals facing any type of cognitive decline should remember is that they are not alone. Healthcare professionals and resources such as the Alzheimer's Association -- with information on topics from current medical trials to written action plans and support groups -- can help form a partnership.
For families coping with the disease, acceptance can be a milestone, Guist believes.
"At some point you just have to accept and be at peace with how it is," she said. "You go through, or at least I did, a kind of grieving process. You have to work through it and find peace within you. It doesn't mean you have to like it, but you have to do it."
Jan Swoope is the Lifestyles Editor for The Commercial Dispatch.