Chair, Alzheimer’s Association, Georgia Chapter Board of Directors
My Father, Coy Widner, taught me life lessons most Fathers teach their little girls. Mine taught me to be assertive but kind; be independent but have healthy relationships; have a hard work ethic but put family first; and face a challenge head on. Meeting him you meet the strong and dependable retired military officer. You meet my Hero.
As someone living with Alzheimer’s you meet my Daddy who is social, charming, and intelligent. As Daddy, he taught me other precious lessons. When he came to live with me, I had to learn other lessons quickly knowing that Alzheimer’s does not allow you to be a slow learner. My first lesson as one of the 11 million unpaid caregivers was Alzheimer’s has no cure, worsens over time and will be a personal journey.
My lessons continued as I learned to have patience to listen when Daddy would repeat a story and not assume that there is not a new detail or message that may have not been a part of the first time. To have patience that dinner will take longer and require reminders to eat. I still eat slower than most people. To have patience to explain why he could not sit in the car for a quick trip to the grocery store, but then have him want to walk down most every isle to look.
My lessons continue today to cherish and live in the moment. I had to learn to slow down my hectic pace and appreciate the time right now. With Daddy I learned to enjoy the conversations even as my heart breaks in the knowledge that he will not remember this precious time.
And a lesson I did not do very well was to rely on others. My Father taught me to be independent, my Daddy was teaching me the part of having healthy relationships. I was so focused on Daddy that when someone asked what they could do to help me, I just did not know. I learned again that healthy relationships are letting other people help me.
My Father taught me to face a challenge head on and as a caregiver for Daddy living with Alzheimer’s this is a challenge no one should face alone. With the help of The Alzheimer’s Association, I find the encouragement to find purpose and work to end Alzheimer’s.
Daddy is no longer with us, but Daddy is still my Hero.
Last week, the Alzheimer’s Impact Movement (AIM) Advocacy Forum, the nation’s premier Alzheimer’s disease advocacy event was held. The event offered volunteer advocates from across the country, including 50 from Georgia, to lend their voice, share their stories about why they’re fighting to #ENDALZ.
Several of our Georgia advocates, whose voices were heard while meeting with their district legislators, talked about why they are advocates and what the hope will be accomplished in Washington, D.C to help people living with Alzheimer’s and their caregivers.
TAMMY KAY BRUNSON – Ambassador to Representative Jody Hice (R-GA 10th District)
1. Why did you decide to advocate for Alzheimer’s and dementia? My daddy passed away in October 2018 from an 8-year struggle with Alzheimer’s. He fell out of the bed, broke his hip and never recovered. He died at home 2 weeks later when his brain could no longer tell his body to swallow or breathe. It was very peaceful. I retired from teaching school in 2014 and was able to help my mother, his full time caregiver, on a daily basis. This time spent with my parents was a special blessing that I will always be grateful!
My parents and I participated in activities for Alzheimer’s patients and their caregivers provided by the Alzheimer’s Association district office in nearby Augusta, GA. That was such a blessing also! Through this, I was asked to consider advocating for the Alzheimer’s Association.
2. What has been the most rewarding part of being an advocate? Meeting all the other people with ties to this dreaded disease and how they have taken care of their loved ones.
3. What has been your overall experience with attending Forum in the past? First time to Forum? What are you looking forward to? Participating in Forum in DC is the best experience I’ve ever had. The hope and joy in the face of the adversity shared by the advocates is unfathomable! My daddy was always so proud that his baby girl was going to Washington, DC “to talk to the Big Man (the president) about Alzheimer’s!”
4. What is your desired outcome of this year’s Forum? My personal desire is for my particular fiscally, conservative congressman to support our asks!
DONNA CAMACHO – Ambassador for Representative Buddy Carter (GA 1st District )
1. Why did you decide to advocate for Alzheimer’s and dementia? My Mother was diagnosed in 1997 and lived with Alzheimer’s for the next 10 years. Although two of her three daughters were nurses, we knew almost nothing about this disease and reached out to the local Alzheimer’s chapter for information and support. I learned about the disease and learned that there was so much that was unknown – both in the physiology and etiology of the disease and in the care of the person living with the disease. I want to help move the scale in any way possible toward a treatment or a cure and I want families to have more resources than we had when my Mother was diagnosed.
2. What has been the most rewarding part of being an advocate? The reward is that we are making progress both in the knowledge of the disease and in resources available to families. The reward is when a family tells you they were helped by the information we provided and their journey was somewhat easier.
3. What has been your overall experience with attending Forum in the past? First time to Forum? What are you looking forward to? This may have been my 9th Forum – I’ve lost track. Forum is a renewal of spirit, a renewal and a rededication to our purpose to end Alzheimer’s. It’s one of those times (in non-virtual times) when you have to be there to fully understand the impact of more that 1300 people who all share the same passion and commitment – to End Alzheimer’s – in the same space!
4. What is your desired outcome of this year’s Forum? I hope that we will have the same impact through our Virtual Forum that we have in person on The Hill. I am excited for the new legislation and hope that all of us can convey the importance of all our “ASKS” to our Congress and get 100% support.
PATTI HEWITT – Advocate Volunteer for Representative Buddy Carter (GA 1st District)
1. Why did you decide to advocate for Alzheimer’s and dementia? I advocate because Alzheimer’s is a disease like no other. Caring for my husband, who died of younger onset Alzheimer’s, was a terrible lesson on how inadequate our healthcare infrastructure to meet the intense demands of this disease. I am his memory and wish to be a small part of the change we need to better support our families and communities.
2. What has been the most rewarding part of being an advocate? Meeting and working with other advocates and giving a voice to our loved ones.
3. What has been your overall experience with attending Forum in the past? First time to Forum? What are you looking forward to? This was my first time to Forum. I’m enjoyed sharing with our legislators how important their work is to improve the lives of their constituents dealing with Alzheimer’s and dementia.
4. What is your desired outcome of this year’s Forum? I want to ensure that our representatives have a better understanding of the impact their support of this legislation could have on families in their state.
ROB POLAK – Ambassador to Representative Andrew Clyde (GA 9th District)
1. Why did you decide to advocate for Alzheimer’s and dementia? For my family that has been ravaged by Alzheimer’s….the following have all passed due to this disease: Grandfather John, Uncle John, Aunt Mary, Mother Rita, Sister Rita. I, and millions of other Americans live in fear of this disease. Therefore, I have chosen to do what I can to make a positive impact toward our vision…. A World without Alzheimer’s disease and other dementias!
I do this by advocating with the Alzheimer’s Association! This includes multiple activities – from being the Chairman of the Walk to End Alzheimer’s-Gainesville, to being a member of the Board of Directors, to working with our elected officials on budgets and legislation that make a positive impact in the lives of those impacted and their caregivers.
2. What has been the most rewarding part of being an advocate? It is helpful to know that others have been impacted by the disease and they also live in fear of the disease. Advocating creates a shared bond with these other victims and their caregivers. Getting to know these people, hearing their personal stories of struggle and small victories, and understanding how they have/are dealing with the disease is inspiring!
3. 2021 was my 5th forum. I enjoyed increasing my knowledge and understanding of the disease. I also enjoyed connecting/reconnecting with other advocates, and meeting with my elected officials to educate them on why we need their help and how they can support our cause!
4. What is your desired outcome of this year’s Forum? I am confident that we educated our elected officials on Alzheimer’s and other dementias and its devastating impact on our country. I am hopeful we will obtain their unwavering support for our priorities (legislative and budget asks) in 2021 and beyond.
TVONIA THOMAS – Ambassador to Representative Barry Loudermilk – (GA-11th District)
1. Why did you decide to advocate for Alzheimer’s and dementia? I chose advocacy to live my dream of one day experiencing a dementia free world. Though this dream has not materialized, being an advocate helps me put my passion in action so that I may help in every conceivable way. I am an advocate not only for the current generations that suffer, but for my generation as well. I cannot imagine being as cognitively sound as I am now, then to gradually lose the ability to recognize the people I love most. As a caregiver, advocate, and student of Gerontology, I realized that my passion was helping individuals and families dealing with this dilapidating disease is very much needed; to say the least.
2. What has been the most rewarding part of being an advocate? Being an advocate has tremendously blessed my life in several ways. Before volunteering with the Alzheimer’s Association last year I did not really know what, my exact purpose was in life. Through this process I have had the opportunity to network with other ALZ volunteers that share my same sentiments. The Alzheimer’s Association has a lot of valuable training and resources that I use for my clients and family members/acquaintances that may be having trouble with finding help. Overall, I am elated to be able to exercise my voice for such a dire public health threat.
3.What has been your overall experience with attending Forum in the past? First time to Forum? What are you looking forward to? I super excited as this was my first time attending the AIM Forum. Though virtual, I believe that our impact will be astronomical.
4. What is your desired outcome of this year’s Forum? This year, my hope is to see our legislators here in GA and all over the United States take a stand to assist our most fragile population with the necessary care, resources, and support to combat Alzheimer’s disease and other dementias.
ANGIE YOUNG – Advocate Volunteer to Representative Rick Allen (GA 12th District)
1. Why did you decide to advocate for Alzheimer’s and dementia? I decided to be an advocate for Alzheimer’s and dementia for my mom and grandma. My mom passed away on April 9, 2021 and was diagnosed with Frontal Lobe dementia two years ago. My grandma passed away a few years ago with Alzheimer’s.
2. What has been the most rewarding part of being an advocate? The most rewarding part of being an advocate is being a voice for those that don’t have a voice.
3. What has been your overall experience with attending Forum in the past? First time to Forum? What are you looking forward to? This was my first time attending the Forum.
4. What is your desired outcome of this year’s Forum? My desired outcome is results and change.
With help from our Georgia advocates like Donna, Tammy Kay, Patti, Rob, Tvonia and Angie, we’ve passed critical legislation and increased federal research funding seven-fold since 2011.
But our work isn’t done and we need dedicated advocates like you to build on this success in Congress and in every state capital. We’ll train you to advocate in a variety of ways, some of which take just an hour or two every few months. Whatever your experience and availability, we’re eager to have you on our advocacy team!
Our cup is overflowing because of the generosity of our Walkers across Georgia have shown toward our mission. We cannot achieve our mission without each of you that have poured yourselves into supporting the fight to end Alzheimer’s. We are now only four months away from our first Walk Day of the 2021 season, so there’s no better time to get things moving on your plans for participation this year.
To help motivate you and your teammates, we thoughts we’d “pour” some love into your “cup.” For every $25 registered Walkers raise May 10 through May 31, they will earn an A-MAY-ZING color-changing Walk to End Alzheimer’s cup! Enjoy watching your cup turn purple as you fill it with your favorite chilled beverage. Each Walker can earn up to 4 cups in May by raising $100!
TEAM CAPTAIN TIP:
Use this as a way to recruit team members. If all your members start fundraising this month, Your team members could earn enough cups to use at an upcoming team gathering!
Get started in earning your cups by registering or logging in for one our our local walks below.
We’re moving forward with plans to host Walk to End Alzheimer’s® in person this fall. The health and safety of our participants, volunteers and staff remain our top priorities as we make decisions about event details in your community, and we’ll continue to offer options to participate online and in your neighborhood. Register today and be the first to know about event details in your area.
On May 17 and 18, the Alzheimer’s Association will be hosting its annual AIM Advocacy Forum, the nation’s premier Alzheimer’s disease advocacy event. This year, due to COVID-19 restrictions, the annual event will be held virtually. Hundreds of Georgia advocates will be meeting with members of Congress, advocating for:
$289 million increase for Alzheimer’s and dementia research funding at the National Institutes of Health (NIH).
Albany resident and Alzheimer’s advocate, Shonda Bell will be attending this year’s AIM Advocacy Forum for the first time. This past year, she has worked closely with Representative Sanford Bishop, GA-02, who was among the first 25 cosponsors of the Alzheimer’s Caregiver Support Act.
“I became an advocate because I wanted to learn all I could about the disease and I wanted to implement change. I have learned through advocacy that in order to get the things we need to make life better for people living with dementia and their caregivers, we must work together with those in office. It has been an honor to build a relationship with Rep Sanford Bishop. I fully understand that building a relationship with a person in position to make decisions and offer help to my cause will be a very important part of my work as advocate”.
For Shonda, this event and her year round advocacy work is very personal. We are honored to share her story.
Shonda has been a caregiver for more than five years, caring for both of her parents, Charlie and Walter Cross. Her mom was diagnosed with dementia in 2016, and her dad was diagnosed in 2018.
Shonda’s mother, Charlie, has always been a very sweet and caring person, always taking care of her family and friends above all else. As the oldest of five children, Charlie was a caregiver herself, a lover of sports, especially bowling and softball, and a skilled and generous cook. Charlie pursued her caregiving instincts and skills while working as a nurses aide at a local hospital for more than 30 years. She was an active member of her community and her church, and was always someone you could count on for a joke when you needed it.
“This whole journey began when we started to notice she was having trouble managing her finances, something she never had any trouble doing before. When she was diagnosed with dementia in 2016, it was just the early stages, and she was still able to care for herself, taking care of the home, cooking, and even driving while I helped manage her finances.”
It wasn’t until December of 2017 that Shonda’s mother Charlie took a significant turn, suffering a stroke that worsened her dementia symptoms and which made living independently dangerous. A few times, Charlie forgot that she was in the midst of cooking a meal and accidentally set their house on fire. Finally, Charlie moved in with her daughter, a full-time special education teacher, so that she could safely care for her.
Since her mother’s diagnosis, it’s been a struggle to access the care and support services her mother needs while Shonda is at work. Filling in these “care gaps” was and continues to be the biggest struggle for Shonda and her family. Fortunately, they’ve been able to pay a private caregiver to come help care for her mother while Shonda teaches.
Prior to learning of her mother’s dementia diagnosis, Shonda and her family did not know a lot about dementia or its signs and symptoms.
“For a lot of people, the signs and symptoms associated with dementia are just brushed off as a normal part of someone getting older, or, worse, they just dismiss that person as being senile or crazy. I want to fight this stigma and this idea that my mother is any less “here” or any less human for living with dementia.”
Since receiving her mother’s dementia diagnosis, Shonda has taken immense steps to educate herself about the disease and what she can do to best support and care for her mother, while also managing all that comes with being a caregiver while also working full-time.
“The power of raising awareness of Alzheimer’s and dementia is that people can be armed with the tools they need to think twice about monitoring their health better. As I’ve done my own research to learn, I’ve learned about the importance of getting enough sleep, eating better, regularly taking medication, and these are all things that I keep in mind now when I think about my own risk of developing the disease and steps I can take to decrease that risk.”
Another step that people can take to advance knowledge of this disease is to participate in clinical trials. This is especially important for communities that have been historically underrepresented and marginalized in research efforts, such as African Americans and Latinos who are 2x and 1.5x more likely to suffer from Alzheimer’s disease than whites respectively. Shonda and her family were never informed about opportunities to participate in clinical trials until they came to the Alzheimer’s Association, and the legacies of abuse that many African Americans have endured in research were not lost on Shonda, who is herself hesitant to participate.
“Part of me worries about the safety of participating in something like this, and another part of me wonders, ‘do I even want to know?’”
As a caregiver for the last few years, Shonda has had to balance all that comes with being a full-time teacher and a caregiver for both her mother and father, all during a pandemic. Most recently, Shonda endured caring for both her parents as they both struggled to recover from COVID-19.
“There have definitely been some overwhelming, “wet-pillow” nights, but I have an incredible support system in my husband and in my daughter. It’s been so hard to watch my mother lose her memories and her abilities and not be able to do all that she used to, but she is still her. She still cracks a wisecrack every now and then, still makes me laugh, and it’s been a joy and an honor to care for her.”
To join us for the 2021 AIM Advocacy Forum, register now at alz.org/forum
This week, we celebrate the unwavering dedication of our volunteers. 2020 was a difficult year for everyone, including the Alzheimer’s Association, but so many of our volunteers stood by us and helped us through. Here are just a few of the amazing people that help us move our mission!
What made you decide to volunteer for the Alzheimer’s Association? I felt like my experience as a caregiver/child of someone with Alzheimer’s, plus my background as an actress and hospital clown with Humorology Atlanta, HA! could be put to use and help others along the way. Life after a diagnose can be lonely and frustrating, and I hope my work as a volunteer can lessen those feelings.
What makes you want to continue to volunteer, or what makes you happy about volunteering? Our Theatre Thursdays have exceeded every expectation I had! I teach basic theatre, yet the biggest lesson that we’ve all learned is how to allow yourself to have fun without judgment or expectation. Honestly, I’m just facilitating a moment of connection and happiness for these couples to enjoy each other without the world’s troubles. Yes, we have to deal with the challenges that come with dementia… but for that hour, we can enjoy each other, stay in the moment and forget about the diagnose. As for me, I’ve learned so much from these fantastic couples by witnessing the love they have for each other. No diagnosis will ever change that.
Other than the theater program, have you volunteered for us in other capacities? I haven’t, but I look forward to different ways to serve this wonderful community.
Camilla White – The Longest Day Committee Member
What made you decide to volunteer for the Alzheimer’s Association? This is near and dear to my heart, having a parent, uncles, aunts who have been impacted by his deadly disease in doing their day to day activities. My mom is one who is impacted by this disease and I’m here to help educate the population so no family will endure the pain that I did because I didn’t know.
What makes you want to continue to volunteer, or what makes you happy about volunteering? I’m happy to volunteer because I’m helping a person or family to make their lives better as they embark on this journey. A smile is worth a thousand words.
Sher Renee – Dancing Stars of Atlanta Committee Member
What made you decide to volunteer for the Alzheimer’s Association? My dear friend Jerri Miller asked me to co-chair the Duluth Memory Walk with her from 2006-2009 to honor her mom. Our team was Pearl’s Girls. I was so inspired by the hundreds of families we met and the deep devotion they had for their loved ones afflicted by AD. My heart took hold and I wanted to help.
What makes you want to continue to volunteer, or what makes you happy about volunteering? I love being part of a team that is so passionate about raising funds for the Alzheimer’s Association. Seeing the profound impact these donations have made in providing support to those afflicted, families so affected and funding for world-class research fuels my enthusiasm to work harder every year.
With a small team, minimal budget and a BIG DREAM, we began our work on the first Dancing Stars of Atlanta. When Mayor Andrew and Carolyn Young became our Ambassadors, celebrity stars and pro dancers joined in and on May 16, 2010, we the launched our first DSA. Over the past 12 years, has become one of Atlanta’s premier events, dazzling as many as 900 guests in attendance!
Working together, year after year, with such a dedicated, talented and enthusiastic team to orchestrate such a magical event has been such a joy! Our DSA community has grown so much and been overwhelmingly supportive in helping us reach our annual one million dollar goal. I am truly blessed to be part of such a dynamic initiative to help free our world from this devastating disease.
Diane Gasaway – Community Educator
What makes you want to continue to volunteer, or what makes you happy about volunteering? Educating people about the disease is what keeps me volunteering. I believe that most people have little to no factual knowledge about the disease. Without knowledge of the disease, they are unable to effectively help the person living the disease and may instead, make it harder for that person. Every person who attends a workshop and gains a better understanding about Alzheimer’s is someone who will be able to share that knowledge with their family and friends. Education makes a difference, one person at a time.
What would you tell other people about why they should volunteer for the Alzheimer’s Association? I would say that volunteering with the Alzheimer’s Association is one of the most rewarding and satisfying ways I have found to help others. Not only has my life been enriched by volunteering, but I know from feedback of others that the information I have shared has made a lasting difference in their lives.
Ada Holley – Support Group Facilitator
What makes you want to continue to volunteer, or what makes you happy about volunteering? I want to give back to the organization and people who helped my mother and me so much as we navigated my father’s journey through Alzheimer’s.
What would you tell other people about why they should volunteer for the Alzheimer’s Association? Yes. Volunteer! Find a job that suits you. It is so rewarding to help others and you learn a lot by helping too.
Diane Hett – Support Group Facilitator
What do you do for the Alzheimer’s Association? For several years, I have facilitated the Caregiver Support Group of St Luke UMC Respite Care. This group serves caregivers throughout the community. I have appreciated the collaboration with the staff of the Alzheimer’s Association. They provide not only a listening ear, but a wealth of information for caregivers.
What has it been like since COVID-19? During this past year, caregivers have lost many resources because of Covid. I am grateful that the Alzheimer’s Association continues to respond to their individual needs, including linking them with a local support group. Our group has met on Zoom each month, giving an important connection and relieving some of the isolation of caregivers. It’s a great privilege for me to share with these amazing women and men.
Please welcome one of our newest volunteers….
Heather Lathbury Seckman – Walk to End Alzheimer’s – Rome Committee
What made you decide to volunteer for the Alzheimer’s Association? Two very dear friends of mine, Kim and Phil Wilson, are an inspiration of strength and love, so I wanted to help them like they help others!
Our volunteers are passionate, inspired, and making a difference in the fight to end Alzheimer’s disease. Whether you can spare a few hours a week or can make a more significant time commitment, please consider becoming an Alzheimer’s Association volunteer.
To learn more about the volunteer opportunities in your community, visit alz.org/georgia