This is the third part of a four-part series on Alzheimer’s, a disease that slowly destroys memory and thinking skills, and eventually the ability to carry out simple, daily tasks. The disease, often referred to as “the long goodbye,” is devastating to those who have it, as well as their family members and friends. The series focuses on the disease, how it is diagnosed, progress in research and resources available for caregivers.
Sanity sessions. That’s what Debi Govero calls Alzheimer’s caregiver support group meetings. The Alzheimer’s Association offers two support groups in Jefferson County, and Govero leads one of them.
It is held from 10 a.m. to noon on the second Friday of the month at the First Baptist Church of Festus-Crystal City. Govero, 66, of Coffman said the meeting is for those who take care of family members with Alzheimer’s.
Tina Hartung, 56, of unincorporated Fenton, leads another support group from 6:30-8 p.m. the second Thursday of the month at St. Anthony of Padua Catholic Church in High Ridge.
No reservations or signup are needed to take part in the caregiver support groups.
According to the Centers for Disease Control and Prevention (CDC), people with Alzheimer’s disease and other types of dementia usually are cared for by family members or friends, and 80 percent of people with Alzheimer’s are receiving care in their homes.
Approximately two-thirds of dementia caregivers are women, about one in three caregivers is 65 or older, and approximately one-quarter of dementia caregivers are part of the “sandwich generation,” meaning they care not only for an aging parent, but also for children younger than 18, the CDC reports.
In addition, those who look after people with dementia provide care for a longer duration than those who provide care for people with other types of medical conditions, according to the CDC. The demands of looking after people with Alzheimer’s or dementia limits caregivers’ ability to take care of themselves, so they are at greater risk for anxiety and depression, and often have a poorer quality of life than those who care for people with other conditions, the CDC added.
Govero said caregivers’ lives can be unpredictable, and they may have difficulty finding someone else to sit with their loved ones to take a break or attend a local support group meeting. However, she said those who can find a way to attend a meeting will get some much-needed support.
The number of people who attend the local support groups varies from as few as three to 10, according to Govero and Hartung.
“We do not encourage caregivers to bring their loved ones,” Govero said.
During the meetings, participants take turns sharing stories about the challenges they have faced, as well as successes and tips.
Govero’s journey
Govero said she was invited to the support group when she was caring for her mom, the late Alice Ann Adams, who had been diagnosed with Alzheimer’s five years prior.
She remembers her goal was to slip in and slip out of the meeting without talking to anyone, but instead she felt safe and opened up.
Her mom died in 2012, and now Govero leads the support group because she knows she could not have made it through those hard times without it.
She said group members laugh and cry together and are not judged for the decisions they make while caring for their loved ones.
By sharing in the group, caregivers learn from each other about how to preserve their loved ones’ dignity while taking care of them, Govero said.
Caretaking is a job you don’t ask for, she said.
“It’s hard to explain to anyone the emotions you go through,” Govero said.
She said caretakers’ biggest job is holding their loved ones’ hand, loving them and making them feel safe and secure.
Govero said she believes if those with Alzheimer’s feel anxious, it can impact the progression of their disease.
Hartung answers call
Hartung said she started volunteering with the Alzheimer’s Association in 2017.
Her mother-in-law, Dorothy Hartung, has Alzheimer’s.
“In 2019, (the Alzheimer’s Association) reached out to the various faith organizations, so I became the faith ambassador for our parish,” she said. “I quickly learned how Alzheimer’s had affected so many parishioners and family members at our church.”
Hartung said the caregiver support group began at the church that fall, originally as a six-week, bimonthly education workshop series. It transitioned into a monthly support group, which paused from early 2020 until June of 2022 because of the COVID-19 pandemic.
“I am very passionate about the disease, and I want to give family members/caregivers as much information and tools to assist them in their journey,” she said. “Our meetings are a great way for others to share their stories and have someone listen and/or share their ideas and concerns with.”
For those who aren’t able to go to a physical support group, you can find online support available at alz.org/help-support/community/support-groups. To find resources for a loved one, call the Alzheimer’s helpline at 1-800-272-3900.
The Alzheimer’s Association often presents free programs in the community. For example, a program called Understanding Alzheimer’s and Dementia will be held at 6 p.m. today, Aug. 17, at the Northwest Branch of the Jefferson County Library, 5680 Hwy. PP, in High Ridge.
The Walk to End Alzheimer’s, which is the biggest fundraiser for the Alzheimer’s Association, is also a place where caretakers can make connections with others experiencing some of the same challenges.
This year’s walk in Jefferson County is set for Saturday, Oct. 14, at the Fox High School athletic field. Registration is at 8:30 a.m. The ceremony is at 9:30 a.m., with the walk at 10 a.m.
Last year, 275-300 people attended the walk, said Doug Geist, walk manager for the Greater Missouri Chapter of the Alzheimer’s Association.
He said most of the people at the walk are going through the same kinds of struggles, so one of the walk’s goals is to make sure those affected by the disease do not feel alone.
Geist said the walk has a carnival-like feel, so it provides a few hours for everyone to have a good time together.
Geist said he hopes to add a new element to this year’s walk – a T-Rex run, which would encourage people to dress up like the dinosaur.
Entry in the walk is free, but people may bring their friends and family together to raise money for the Alzheimer’s Association.
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Click through to see all stories in this series related to Alzheimer's.