“Nobody knows what I’m going through.”
“They don’t believe me.”
“They think I’m exaggerating. ‘It can’t be that bad,’ they say.”
“They just don’t get it.”
The phrases above have, at one time or another, been expressed to Ruth Guzman by caregivers of loved ones who have Alzheimer’s, the most common cause of dementia.
And as the phrases above so clearly indicate, this almost naive lack of understanding about the disease from friends, family and loved ones can lead to frustrations for the primary caregivers, who often feel as if they are, themselves, fending against the unknown on a lonely island offshore.
Which is exactly why Guzman decided to establish an Alzheimer’s caregiver support group in Joplin, which meets the third Thursday of each month at the Area Agency on Aging, 531 E. 15th St.
“They wanted a place where they could meet and be with people who know what they are going through, and who might actually have (viable) suggestions,” she said.
Guzman, a volunteer with the Alzheimer’s Association and a trained support group facilitator, knows a thing or two about the dreaded 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. And when Guzman moved her mother from her home in San Antonio, Texas, to Joplin, Guzman didn’t know much about dementia-related diseases such as Alzheimer’s, which affects 44 million people worldwide and an estimated 5.5 million here in the United States, according to www.alz.org.
“My journey started back in 2002 — I knew nothing,” she said. “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 that was slowly stripping away her mother’s memory was something a doctor told her in passing back 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.”
Between 1997 and 2002, when she would go to the Lone Star State twice a month to visit her mother, she noticed her mom forgetting things, such as when or even if she’d taken her daily medication. “Just little things like that, short-term memory loss (incidents), so I knew that something was wrong, I just didn’t know what it was,” Guzman said.
But she did the best she could, along with huge help from her husband and daughter. Despite their hard work, right there before their eyes, “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 continued. “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. It’s the disease’s fault,” Guzman said. “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 into St. Luke’s Nursing Center in 2011. The center possessed the medical staff and expertise to properly care for her. There was guilt. Huge guilt, Guzman admitted. But such feelings shouldn’t be fanned into flames, Guzman said.
One of the nurses who struck a chord with her said, “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 (nursing) home I will feel guilty, and I don’t want to feel that kind of guilt.
Sadly, Guzman’s mother passed away 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.
While the monthly support group will tackle a number of key issues — dealing with anger, frustration, exhaustion, finances, legal and medical issues — “the core of this group,” Guzman said, “is for caregivers 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.”
She hopes the group can eventually evolve to become one that will physically give mutual help and support to other members, perhaps stepping in for an hour so a member can catch a short break, go out shopping or just take a much-needed two-hour nap.
“This is what I want people to learn (in the group): This is what’s coming. There are no happy endings — sadly. I wish there were. But they can make this journey as smooth as possible, so they’re not blindsided by anything.”