Local (and some National) News Highlights
June 23, 2014
'Chicken Soup' book on Alzheimer's includes Kentuckians
Lisa Richardson of Georgetown, KY., loves to tell the story about the time her mother, Myrtle, called her father, Ran, to report that she had spotted a "bear" in their backyard in Irvine, KY.
Ran Richardson, who was incredulous at first, returned home to find there was indeed an animal there--a cow that had wandered into their neighborhood from a nearby farm.
The family, which tells the story with humor, chalks up the case of mistaken identity to Myrtle Richardson's Alzheimer's disease.
"My mom in the height of her dementia had halluciations and she was absolutely convinced that this big, large animal that was in the backyard of our house was a bear," said Lisa Richardson, who tells the story with a chuckle. "Even right up to the very end, we were able to say, 'Hey mommy, tell me about that bear that was in the backyard,' and she would just tell the whole story over and over again."
Richardson, a manager at Toyota Engineering and Manufacturing in Erlanger, KY., shares the tale in "Chicken Soup for the Soul: Living with Alzheimer's & Other Dementias" (Chicken Soup for the Soul Publishing, $14.95).
She is one of two Kentucky women wh contributed to the book of "101 Stories of Caregiving, Coping, and Compassion." Theresa Hettinger of Louisville, whose mom developed Alzheimer's, also has a story in the book, which includes personal stories from numerous everyday people as well as strategies and tips for coping.
Though people typically associate Alzheimer's with sad stories, "there's an entire chapter about humerous things that have happened," Lisa Richardson said. "When you're dealing with a person with Alzheimer's or dementia on a day-to-day basis, sometimes you just have to laugh about it, because you just can't cry anymore."
Royalties from the book go to the Alzheimer's Association, a nonprofit that provides education and support for people and families affected by Alzheimer's. The group also does fundraising events, such as the Walk to End Alzheimer's.
Hettinger, a Metro United Way employee, wrote a poignant story about visiting her 84-year-old mother, Louise, every day in a nursing home and wondering what she would think about their interactions and the caring gestures she's made over the years. A few include ironing the name patches on top of her mother's socks so the patches wouldn't tickle her feet and giving her goodbye kisses.
"She can't really talk or carry on a conversation, "Hettinger said earlier this month. "She'll say a few words every now and then, which makes it al worthwhile."
The book can help caregivers cope with the isolating nature of the disease, said Teri Shirk, executive director of the association's Greater Kentucky and Southern Indiana Chapter. It affects more than 5 million Americans, inclduing nearly 70,000 seniors in Kentucky.
"Alzheimer's disease can be a very lonely process, not only for the individual with dementia but for their families," she said in a written statement. "Chicken Soup for the Soul creates a community--a safe place to understand and share the experiences of others living with Alzheimer's."
Lisa Richardson made similar commment, noting, "There are things that people can learn, I think, by reading from other people's struggles and triumphs in this book that I think would be really helpful to someone who's a caregiver or a family member of someone who has the disease."
"It just reassures you that you're not alone--not alone at all," said Hettinger, who submitted her story at her sister's urging.
Lisa Richardson wrote up her bear story after seeing a call for submissions on Facebook and thinking "someone would get a smile out of it."
Humor was something that helped Lisa Richardson's family cope with her mother's disease. Her mom, who died in 2012 at age 76, was diagnosed in 2009 but had struggled with dementia about a year before that. Ran Richardson was her main caregiver.
"Even in the depths of the worst part of mom's disease, we were all still able to laugh together, and we found a lo of comfort in that," Lisa Richardson said.
If her mother were here today, "she would be very glad" that others are getting to share in the joke, her daughter said. "There's no doubt about that."
For more information about "Chicken Soup for the Soul: Living with Alzheimer's & Other Dementias" (Chicken Soup for the Soul Publishing, $14.95), go to www.chickensoup.com.
June 16, 2014
Hopeline Grant helps prevent abuse of elders with Alzheimer's
Barbara Webb, whose husband, Al, was diagnosed with Alzheimer's disease six years ago, usually lays out the clothes Al is to wear each morning. But if Barbara doesn't remain the in the room to make sure Al puts them on, she's likely to return and find he has hung them all back up in the closet and is waiting patiently for her to hand him his outfit for the day.
"I can't speak for what goes through his mind, but I do know what goes through mine - frustration with my inability to help him more, sadness at what we have lost and fear of the unknown and future," Barbara says. "I try to remain calm and patient and remember above all else, he can't help himself; it's the disease. But it isn't easy for me, either."
Following Al's diagnosis, the couple decided to go public with their story so they could raise both awareness and funds for research and programs to help those facing the disease, which now afflicts 5.2 million Americans and leads to more than 500,000 deaths a year. Similar to about 70% of individuals with Alzheimer's, Al still lives at home with Barbara, and she provides the growing level of care he needs.
Programs offered by the Alzheimer's Association have made it possible for people with Alzheimer's to stay at home longer, and for their caregivers to deal with the stress created by the toll the disease takes on the entire family. That caregiver stress, the vulnerability of a person with dementia who cannot remember or talk about being hurt and the aggressive behavior of some Alzheimer's patients, all raise the risk of patient abuse. A 2010 study published in the Journal of Geriatrics found that 47% of participants with dementia had been mistreated by their caregivers. Recently, the Alzheimer's Association of Greater Kentucky and Southern Indiana received a $9,600 Hopeline from Verizon grant for programs that help prevent caregiver abuse in families living with Alzheimer's. The Hopeline grant will help fund support groups that enable caregivers to build an external support system, which provides a healthy outlet for venting their frustration; a 24-Hour Helpline (800-272-3900) that caregivers can call in moments of crisis; and early stage classes that help families dealing with Alzheimer's understand what's happening to the patient's brain and learn what behaviors to expect.
Barbara credits the early stage classes with helping her know what to expect and find strategies for dealing with her frustration.
"When he asks me the same question over and over again and I want to scream, I have to take that deep breath and tell him one more time the answer to his question," Barbara says. "I try to remain calm and loving because if I have learned one thing, it is that it doesn't help to raise my voice, and you can't argue with an Alzheimer's patient. It only exacerbates the situation and leads to more frustration."
April 19, 2014
Running for a Cause!
Siblings Barb Maloney and Will Schnurr ran 13.1 miles and raised funds as ALZ Stars in the Kentucky Derby Festival Mini-Marathon. They did so in honor of their grandparents who both have Alzheimer's disease. For years this race has been used as a vehicle to raise awareness and funds for many local and national charities. We salute Barb and Will for not only giving of themselves physically, but for giving to others as well.
March 17, 2014
Local high school senior, Michael Kamer, shares his experience with Alzheimer's
Recently, Michael Kamer, Lexington area high school senior and son of Board of Directors member Mauritia Kamer, completed his college applications. When asked by the College of William & Mary "Beyond your impressive academic credentials and extracurricular accomplishments, what else makes you unique and colorful?", Michael responded with the eloguent and moving story of his experiences with Alzheimer's.
The woman who sits silently in the corner working on what appears to be a finger painting by a kindergartner is actually an accomplished amateur artist who singlehandedly grew the family business into a national firm after the unexpected early death of her husband. Now she does not know her own name and cannot stay by herself in her own home. When I volunteer at the Best Friends Day Center that provides care for people with Alzheimer’s Disease, I am the youngest person in the room by many decades. Initially, the Center’s staff was hesitant to let me volunteer because I was only fourteen years old. However, by that time I was a veteran at dealing with Alzheimer’s following my grandmother’s diagnosis four years earlier. As a result of my grandmother’s experience with Alzheimer’s, I am able to see the people at Best Friends as they were, not as they are now.
Alzheimer’s has impacted my entire family. With my grandmother, I saw a woman who grew up in poverty and found her salvation in education. Through a combination of hard work and intelligence, she was able to earn a master’s degree. My love of learning comes from her guiding influence. My grandmother also knew how to be silly with her grandchildren, encouraging me to act like a kid despite my serious nature. When she was first diagnosed with Alzheimer’s, she forgot ordinary words like articles of clothing or food items when they were placed in front of her. At the end of her life, she was able to speak only gibberish. Her frustration at being unable to communicate was palpable. My parents and other family members taught me how to treat others with dignity and respect. In particular, my grandfather’s devotion to her was inspiring.
An important lesson I have learned from my grandmother’s battle with Alzheimer’s is that people should not lose their value in our society just because their capabilities are diminished. Alzheimer’s is a disease that still carries with it a sense of stigma and shame for many families. We need to learn to get past these unproductive emotions. My generation is faced with the challenge of caring for the staggering number of people projected to be living with Alzheimer’s when we are the adults responsible for ensuring their care.
Working with individuals suffering from Alzheimer’s has taught me humility. There is nothing like losing at a game of Scrabble with a former university English professor to appreciate how much she still has to offer. Volunteering at Best Friends has made clear to me the Jewish saying from The Talmud, “Respect the old man who has forgotten what he learned. For broken Tablets have a place in the Ark beside the Tablets of the Law.” The tablet of my grandmother is imprinted on my future.
-- T. Shirk
February 10, 2014
Kentucky and Southern Indiana Chapter honored at Leadership Conference
Greater Kentucky and Southern Indiana Chapters efforts were recognized in numerous ways during the Alzheimer’s Association’s annual Leadership Summit and Walk Conference. The list includes: Walk Team Retention- 3rd highest retention rate in the country, asked to present to our peers, Walk Growth-4th highest dollar growth in the country during the 2013 season, Early Stage & Physician Outreach-Asked to present to our peers based on successful program delivery, Outstanding Achievement in Public Policy for visits to Congress. Teri Shirk expressed how proud she was of this recognition by our peers and the National offices of the Alzheimer's Association.
-- T. Shirk
February 4, 2014
Lexington, KY's Reason to Hope Breakfast a great success!
Lexington’s Reason to hope Breakfast had 79 guests in the room, excluding the table hosts and the staff. Of that, 72 guests who had not previously been involved with the Alzheimer’s Association, learned more about our mission and were given an opportunity to support the cause. The goal was to raise $10,000 – the preliminary count is $21,000 including sponsorship and there are still a few pledge cards to be mailed back or collected. This is phenomenal: we could not be more pleased.
-- D. Esslinger