Sep. 17—Ruth Guzman hears it all the time from people who find themselves at the end of their emotional ropes.
"Nobody knows what I'm going through," they'll tell her, or "They don't believe me" and "They just don't get it."
Dozens of caregivers of loved ones with Alzheimer's, the most common cause of dementia, have uttered these phrases in her presence time and time again. They talk to her about a general lack of understanding from friends, family and the public when it comes to the disease and the emotional toll it takes on everyone involved. Worst of all, they feel like they are sitting alone, on some faraway island, making things up as they go along.
It's why Guzman decided to establish an Alzheimer's caregiver support group in Joplin in 2019. After a pandemic-induced hiatus, the group meetings are open to the public once again, meeting at 6 p.m. each third Thursday at the Area Agency on Aging, 531 E. 15th St.
"Almost every member of the support group has stated that they come to the group because it's the only place where they feel anyone understands what they are going through," Guzman said.
Earlier this year, Freeman Health System announced the creation of a similar group, the Caregivers Support Group, which meets once a month at the Freeman East conference room, 932 E. 34th St.
"These selfless individuals need support, camaraderie, resource education, and reminders of the importance of self-care and how to avoid caregiver burnout," said Freeman Geriatric Center social worker Jennifer Berry during the inaugural meeting in March. "Sometimes, all they need is normalization and to know that others are struggling with caregiving responsibilities too."
Nationwide, 65.7 million people act as caregivers, and that number grows each year. Currently, that number is 29% of the country's adult population. September is World Alzheimer's Month, and Sept. 21 is World Alzheimer's Day.
"Caregiving can be challenging, stressful and overwhelming at times," Berry said. "It is taxing not only physically but also mentally and emotionally. Throughout my career as a social worker within the health care system, I have witnessed the impact that a caregiving role can have on an individual. I've had several report feelings of guilt that they wish that they could do more or don't feel they are doing enough. But in reality, they are balancing their own life and the large role of caregiving to the best of their abilities, and they need to hear that because it's so very important and so easily forgotten."
Learning along the way
Guzman, a volunteer with the Alzheimer's Association and a trained support group facilitator, knows a thing or two about the disease. For 10 years, she was the primary caregiver for her mother, who had vascular dementia, a general term used to describe problems involving reasoning, planning, judgment and memory. At the time, Guzman didn't know much about Alzheimer's, which affects 44 million people worldwide and an estimated 5.5 million here in the United States, according to the Alzheimer's Association.
"I knew nothing," she said in a 2019 interview, when the group was first established in Joplin. "I was unprepared for anything that was about to happen. I educated myself. I read everything I could read, found everything I could do, which kind of made things a bit easier — but not always."
One of the first things Guzman learned about the disease was something a doctor told her in passing in 2002. Forgetting, he told her, is not a natural part of aging.
"You can forget where your car keys are, but when (memory loss) starts to have a negative impact on your daily life, then something physiological is happening to your brain," Guzman said. "And I was seeing that with my mother."
Watching impact on mother
Between 1997 and 2002, Guzman noticed her mom forgetting things, such as when or even if she'd taken her daily medication. "I knew that something was wrong. I just didn't know what it was.
"You lose somebody every day — a tiny piece of them."
She also was forced to do something she was told never to do.
"You learn to lie," Guzman said. "It's called redirecting. Even though my grandmother's been dead since 1990, and my mother was in her 80s she would get upset and say: 'Momma's going to get mad at me if I'm not home' and I would just say, 'Hey, I called her and told her you're spending the night with us and that it's OK.'
"My mother became very childlike," she said. "And sometimes they are angry children. With (dementia, and Alzheimer's especially), you have to step into their world and have no expectations from them because they don't know anymore."
Patience and humor: Those are the two key attributes to have as a caregiver supporting a loved one with dementia.
"You have to remember that it's not their fault," Guzman said. "It's the disease's fault. That was a daily mantra for me: 'It's not her fault. It's not her fault.' She would ask me questions 25 times a day, but I taught myself to answer it like it was the first time, every time. I thought: 'Why does it hurt me to answer a question 25 times? It's certainly not hurting me.'"
You also have to keep in mind, Guzman said, "that they are not the person they used to be. They're in there — deep, deep somewhere — but they have moved into a whole new existence that we can't understand. But that's part of caregiving — you have to learn to move into their world instead of trying to force them to cope in ours."
Eventually, because of medical needs and worsening conditions — her mother was getting up at least 15 times a night, trying to leave the house — she and her family could no longer meet the needs of her mother. They were forced to place her in St. Luke's Nursing Center in 2011. The center possessed the medical staff and expertise to properly care for her. There was guilt, Guzman said, but such feelings shouldn't be fanned into flames.
One of the nurses said to her, "I know what you're doing. You're the one who thinks you can keep them" inside the home until they die.
"I just said, 'Wow.' No one had ever said that to me before. People don't realize that there comes a point where they have medical needs that you can no longer meet," Guzman said. She called the urge to keep her mother at home a sort of selfishness. "I think we all have this innate selfishness that if I put her inside a home I will feel guilty, and I don't want to feel that kind of guilt.
Guzman's mother died one year later.
"The first vacation my husband, my daughter and I took together was my mother's funeral in San Antonio. That had been the first time we'd traveled together since she had moved in" 10 years earlier, Guzman said.
Both monthly meetings tackle a number of key issues — dealing with anger, frustration, exhaustion, finances, legal and medical issues. The Freeman group offers guest speakers and tangible resources, while Guzman's group allows people to individually speak about their problems out loud.
Both groups serve as a release valve for caregivers, Guzman said. It allows them to know "that they need to care for themselves. You have to take a break, even if it's a two-hour lunch and a movie. You have to get away."
Both men and women have commented to her about how glad they are the group exists.
"That in itself means a lot to me," Guzman said, "because it means I am accomplishing something."