Jon Mark Beilue: Care for the Caregivers

W.K. Anderson, every week, talks with his fellow caregivers, discusses challenges and frustrations in dialogue led by West Texas A&M University academic and clinical instructor Traci Fredman. All the while, he can look at a video monitor and see Charlotte, his wife of 65 years.

She and others like her are in an adjoining room with WT graduate students. Charlotte may be trying to fold laundry or look at Valentine’s Day cards and reminisce about past holidays, or separate items by color.

For the last two years, 90 minutes each Wednesday, the WT department of communication disorders hosts a support group for caregivers and those with dementia. It’s an hour-and-a-half of welcome respite and support for weary caregivers, and some crucial experience for grad students in speech and language pathology.

“For most of our students, this is the first time to work with geriatric adults in a clinical situation,” Fredman said, “and what they come away saying is, ‘I can do this. I’m not scared anymore.’ In the first semester, all our students work with are children, and so many have no idea what to expect with adults like this.”

Dementia, in 60 to 80 percent of cases, leads to Alzheimer’s, that insidious disease that causes the brain to deteriorate with the loss of memory and cognitive function. It is the sixth-leading cause of death in the United States. More than 5.7 million are afflicted.

Since it strikes most adults over the age of 65, the primary caregiver is often the spouse, who is usually as old as the patient. The demands of caregivers is great and seemingly without end, which would zap the energy and outlook of most young caregivers, much less than those in their 70s and 80s. 

“Caregiving is a tough job. It’s 24/7 — it really is,” said Anderson, 85. “You just have to have some relief from the constant care.”

Anderson has been bringing Charlotte to the class for about one and a half years. They learned about what the WT communications disorder department was offering through a friend, who had been taking her husband to the class.

“It’s been really helpful for the caregivers,” Anderson said, “just knocking around on each other and knowing what you’re going through is not unique. It helps knowing you are not the only one dealing with this. There’s always going to be someone else this happens to.”

Prior to the Christmas break, the class was in the Virgil Henson Activities Center on campus. Now, it’s on the first floor of the WT Amarillo Center, the new Harrington Academic Hall at 720 S. Tyler Street in downtown Amarillo, whose ceremonial ribbon cutting on the 20,500-square-foot remodel is March 6.

“It is a brand new state-of-the-art clinic,” Fredman said. “Before, it could be a very long walk for our patients, especially those with Parkinson’s or dementia. Now, they can just walk in the front door.”

Leah Gonzales is one of two graduate students working on her master’s degree in speech and language pathology in the class. She got her undergraduate degree at Cal State-Fullerton. Her supervisor in a speech and hearing clinic, where she volunteered in southern California, got her master’s degree from WT. That helped bring her to Canyon.

“Last semester, I spent working with kids, so I was definitely pretty intimidated at first with working with dementia patients,” she said. “The only interaction I had before with dementia was my grandmother, and I didn’t really know how to interact with her then. But our supervisors are great in teaching us different strategies of interaction.”

The class began two years ago with eight caregivers. Now, they are down to two, though Anderson and Fredman know there are others who fit this category but are unaware of the program. Some patients have died. Others have gone into long-term care. Other caregivers became too old.

There are three reasons Fredman started the caregivers support group — for the caregivers themselves, for the patients, and for the students who need 400 clinical hours of graduate work. So while caregivers and an instructor discuss their issues, the graduate students — which at one time was as many as eight — take the patients in an adjacent room to gently work with them for 90 minutes.

The students’ goal for the patients is to get them engaged, get them in the moment and focused on a simple task at hand, something like separating items by color.

“The No. 1 thing we tell them is this is not therapy. Do not ‘therapize’ them,” Fredman said. “You can ask them to name things or tell you what color or shape an object is, but don’t ask them the names of their kids and what they do for a living.

“Don’t ask them a question where the answer is right or wrong. Take what they talk about or what their interests seem to be and build on that. We tell them that is not typical therapy. It’s totally different. Our students are like, ‘Oh my gosh, I never knew there was so much to think about with a person with dementia.’”

For Charlotte Anderson, she was diagnosed in 2006 at the same time as her twin sister, Charlene, who died from Alzheimer’s two years ago.

In the beginning, W.K. noticed small things, like Charlotte leaving her purse in public places. Clues were so gradual that he didn’t notice until much later.

“Then you think, ‘OK, that wasn’t right,’” he said.

Today, Charlotte, his high school sweetheart at Amarillo High, can not only not perform household activities, but her husband cooks, helps her dress, and bathes her. It’s all out of love and necessity, but it takes a toll. Twice a week, a granddaughter helps, and on Friday, Charlotte goes to Jan Werner Adult Day Care.

“She can’t do it anymore,” he said. “She thinks she can, but she can’t. It’s really sad. It’s like maybe she’s 4- or 5-years-old. Other than the mind, her body is still working. It’s just a terrible disease when the mind goes haywire.”

There is no cure for Alzheimer’s, and not much in the way of treatment. But in the department of communication disorders, one class does what it can for those affected and for its students.

“WT has a good program,” Anderson said. “It’s helpful for the caregivers. It’s helpful to watch my wife interact and certainly for the students and the first-hand experience they get before they get out in the real world.”

Do you know of a student, faculty member, project, an alumnus or any other story idea for “WT: The Heart and Soul of the Texas Panhandle?” If so, email Jon Mark Beilue at jbeilue@wtamu.edu.

—WTAMU—