November brings two important occasions to celebrate: the Thanksgiving holiday and National Family Caregivers Month. This month, let us take this opportunity to honor and recognize the caregivers in our lives, and to give gratitude for all the hard work they’ve done to love, uplift, and care for us and those we hold most dear. In taking this opportunity to thank caregivers, let us also reiterate and renew our commitment to standing up for caregivers and fighting for state and federal policy that will improve their lives.
There are more than 11 million dementia caregivers in the United States, including 334,000 Georgians. These dedicated caregivers provided more than $257 billion worth of uncompensated care in 2020, and the burden of care is only increasing year after year. On average, each dementia caregiver today spends 20% more time providing care than a dementia caregiver did a decade ago, often at the expense of the caregiver’s own health. Nearly 75% of dementia caregivers are concerned about maintaining their own health, and a third report worsening health due to the care responsibilities.
Fortunately, there are a number of bills in front of Congress that address caregiving challenges, including the Alzheimer’s Impact Movement-supported bill, the Alzheimer’s Caregiver Support Act. This bill would establish a grant program that community-based organizations could utilize to expand training, education, and support for caregivers in their communities.
In Georgia, we are fortunate to have robust support for this piece of legislation from our congressional delegation, with the following Members of Congress (MoC) signing onto this bipartisan bill as cosponsors:
- Congressman Buddy Carter (GA-01)
- Congressman Sanford Bishop (GA-02)
- Congressman Hank Johnson (GA-04)
- Congresswoman Nikema Williams (GA-05)
- Congresswoman Lucy McBath (GA-06)
- Congresswoman Carolyn Bourdeaux (GA-07)
We are grateful to these Members of Congress for taking swift action to support caregivers in their congressional districts. Today, we will hear from two Georgians who will share a window into their caregiving journeys and illustrate the importance of training and support for caregivers.
Ann Sechrist (GA-07), represented by Rep. Carolyn Bourdeaux)
Ann Sechrist is a caregiver to her husband, Nelson, who is living with Alzheimer’s Disease. It was around 2005 when Ann first started noticing that Nelson seemed to be forgetting things more often and that he was more easily frustrated and confused. “Looking back,” Ann says,” I think the disease started a long, long time ago.”
Nelson, an engineer with a masters’ degree, started his business in sales for the autonmechnic industry about 30 years ago. In 2007, as Nelson’s symptoms seemed to progress, Ann urged Nelson to close the business. Unknown to Ann, Nelson had been struggling to manage the finances and they were on the brink of declaring bankruptcy. Throughout the process, Ann remembers that Nelson really wasn’t acting like himself, that he’d normally be so careful and concerned, and certainly stressed about something like this, but he wasn’t.
“I worked seven days a week trying to avoid it, but we both ultimately had to file bankruptcy. At 60 years old, it felt like starting completely over.”
In 2011, Ann accompanied Nelson to the doctor who did a quick memory test with him. After showing indications of dementia, their doctor referred Nelson to Emory Integrated Memory Clinic, where they were able to confirm the diagnosis of Alzheimer’s Disease.
From then on, Ann and Nelson sought resources, training, and support from both Emory and the Alzheimer’s Association, Georgia Chapter, where they also attended support groups. We decided this was not the end of the world and we were going to live life to the fullest.
“We were lucky to have found the Association and Emory so early on. All the training you can get, and the opportunities to learn from other caregivers and lean on each other, it pays off.” This type of training and support, Ann says, helped her navigate through some difficult times, like when making the decision that Nelson could no longer drive, or in making the decision to move him into an assisted living facility.
It also helped prepare for the moments of joy they still share with one another, like a recent day where Ann and her son and Nelson’s brother visited Nelson and shared a family weekend full of shuffleboard, horse shoe throwing, puzzles, and laughter.
“Every caregiver deserves access to the training and education they need,” Ann says, “Alzheimer’s is a very expensive disease, emotionally, financially, and physically, and we absolutely need broader access to the resources, especially in underserved and rural communities. The training and support I received is what saved me in many ways in being able to handle Alzheimer’s successfully and still maintain a relationship with my husband. The Alzheimer’s Caregiver Support Act is an important step to ensure all caregivers have access to these resources in their communities.”
Peggy Lavender (GA-06, represented by Rep. Lucy McBath)
Peggy Lavender’s caregiving journey began when her mother was diagnosed with dementia. Peggy’s mother lived until her mid-90’s with the disease, and throughout that journey, Peggy learned just how emotional and demanding a caregiver’s journey could be.
Peggy and her husband Jim have been married for nearly 36 years. Jim was diagnosed with early-onset Alzheimer’s disease in June 2014 at the age of 61. The diagnosis was a confirmation of concerns several years prior that Peggy and her sons had shared for a few years of memory loss, was a memory loss, behavior changes, and forgetfulness. r’s disease at the young age of 61 years old.
Peggy recalls one day in particular that gave her cause for concern: Jim had left the house to attend a funeral. After hours of being gone, Jim returned, and when she asked him how it went, he replied, “I must have visited every church in downtown Atlanta and was never able to find it.”
Only two months after receiving Jim’s diagnosis, Peggy called the Alzheimer’s Association Helpline seeking resources and support, and was connected with a support group among peers who were facing a similar journey with their loved ones.
“That’s really what started my journey,” Peggy shared, “I began to seek help and educate myself on all there was to know about Alzheimer’s and how I could best support Jim, myself, and our family throughout this process.”
As Jim’s disease progressed, so did the demands of his care. Peggy retired in 2018 (earlier than planned) to care for Jim full-time, 24/7. After seven years of taking care of Jim at home, Peggy, along with the support of her adult sons James and Matthew, made the difficult decision to move Jimi into a memory care facility in Feb 2020.
Like Ann, Peggy says the support and training she received helped prepare her for both the painful and joyful moments of caregiving. One of the hardest moments, Peggy shared, was when she and Jim made the trip to watch her son Matthew’s graduation. They were sitting at the dinner table staring off into the beautiful scenery in Monterey, California when Jim peered across the table at his son and asked, “And who are you?”
While this was one of many heartbreaking moments for Peggy and sons James and Matthew, they’ve continued to provide Jim with excellent care and make cherished memories with one another as a family. In June 2019, Peggy decided that she wanted to take Jim to the beach where their family had gone annually for 30 years of annual after retiring to Peggy decided to arrange a family vacation to the same beach she and her family had visited for 30 years. Though it was a difficult trip to arrange, she, Jim, and the entire family were able to share that experience and memory, and Jim even recalled, “I have been here before.”
“What I really want people to know about caregiving is the sheer totality of it. Caregiving, especially for a spouse, permeates every aspect of your family and your life, and you really need to have a strong system of resources and support to keep pushing through both the good and the bad. Although this journey has been a challenging one, I wouldn’t have had it any other way.”
Throughout her caregiving journey so far, Peggy shared, advocating has been among the most rewarding and empowering.
“You really have to try to stop yourself from falling into that place called helplessness. I look at people who are just at the very beginning of this journey, and it just reminds me that everyone needs access to the training and support they need to navigate through. We need policies that will support all caregivers, and I’m proud to be a part of a team of advocates working to make that happen.”
Cai Yoke (GA-05, represented by Rep. Nikema Williams):
Cai Yoke was only eight years old when her grandparents made the move from Anniston, Alabama to Cleveland, Ohio so that they could be closer to family and to the Cleveland Clinic, where her grandmother was undergoing treatment for leukemia.
Shortly after her grandmother passed away, Cai’s grandfather would walk into the same hospital to receive his diagnosis of Alzheimer’s disease. While Cai remembers those moments with her grandfather that made it clear that his dementia was progressing (forgetting family member’s names, wandering at night, repeating the same stories at dinner time), it’s the toll that caregiving took on her mother that really sticks with her.
“Here my mom was, raising five kids including twins under the age of ten, and all of the sudden, she was entirely responsible for the complicated and often grueling care that my grandfather required.”
Cai’s mother was just one of many “sandwich generation” caregivers who juggle the responsibilities of raising children while also caring for a parent. It wasn’t long before the toll it took on her mother became apparent.
“She would always put us and my grandfather first. She started skipping doctor’s appointments. She woke up extremely early and was always up late making sure we and my grandfather were okay. She had a special doorbell that my grandfather could ring if he needed anything, and she got up at all hours of the night, up and down the stairs, to go and check on him. We did our best to shoulder caregiving responsibilities as a family, but we were often overwhelmed and exhausted, my mom the most of all.”
Unlike Ann and Peggy, Cai’s family was never able to get connected to the resources and support that might have made this journey easier. Like it is for many families, their experience of Alzheimer’s was extremely isolating, and they struggled to find the support they needed to alleviate some of the stress of caregiving that was taking such a toll on the entire family.
“I often wonder what our lives would have been, what my mother’s health would be like now, if we had just had the access to resources we needed. Now, my siblings and I face the prospect of being a caregiver for my mother who, not yet even 60 years old, is struggling to maintain her own health.”
As the Advocacy Manager at the Alzheimer’s Association, Georgia Chapter, Cai is especially passionate about the Alzheimer’s Caregiver Support Act and the promise it has to help families like her own who might be struggling with the isolating impact of this disease.
“I’m grateful to my Congresswoman, Rep. Nikema Williams, who has taken action to support this bill, and I am wholeheartedly committed to raising my voice alongside our amazing community of advocates to ensure this bill passes and caregivers across the country get the help they need.”
To learn more about becoming an advocate for the Alzheimer’s Association, visit alz.org/georgia