News Media and Print
The laughter on the top floor of the Doubletree Hotel downtown told that Patrick Caffrey’s PowerPoint presentation resonated with his audience.
More than 50 persons on a recent Saturday enjoyed one of the best views of Kansas City and the informative, relaxing atmosphere of the Alzheimer’s Associations fifth annual Caring for the Caregiver Conference.
It’s a wonderful event, giving people attending to loved ones with Alzheimer’s disease a chance to relax, socialize, learn and feel renewed.
Caffrey is a neuropsychologist with Caffrey Comprehensive Services. He is on the staff at St. Luke’s Hospital and the Mid-America Brain and Stroke Institute.
He mixed a lot of humor into his presentation on the “Top 10 Ways to Avoid Caregiver Burnout.” He listed things that often happen versus what people should do. He started at the bottom of the list, saying:
10) “Caregivers keep feelings of bewilderment, frustration, disappointment and guilt to themselves. They shouldn’t.“
“We try to encourage people to avoid burnout by expressing negative feelings,” he said.
9) “Caregivers take a break, but they don’t enjoy it and even feel guilty about it.” The audience laughed.
Caregivers even feel bad about thinking of taking a break, Caffrey said. The restorative value in resting is lost and so is the quality of care that the loved one with Alzheimer’s disease needs.
8) “People abandon their individual interests such as gardening, reading and traveling to care for a loved one.” Caffrey said he encountered a caregiver at a gift shop whose hobby was going to antique stores. “Just visiting that gift shop represented a significant milestone,” he said.
7) “Caregivers sacrifice their sleep and nutritional needs to save time and energy.” Caffrey encouraged people to take care of themselves so they can better aid their loved one.
6) “People caring for others with Alzheimer’s disease silently harbor grudges directed to the person needing assistance and to individual family members who provide only occasional or no help at all.”
More people laughed, noting that they’ve experienced it too.
Caffrey encouraged people to always ask for help when they need it. Otherwise people will assume everything is OK. Caregivers also often feel that they are missing out on the fun in life. But people with Alzheimer’s disease feel the same way.
Sadness, anger, depression and resentment build and fester. “you don’t hear please and thank you quite as often as you should,” Caffrey said.
Caregivers often become “crispy,” or short-tempered, before they completely burn out, Caffrey said. Their enthusiasm is one of the first things to go.
5) “Caregivers think their loved one’s distressing behavior reflects on the care providers’ shortcomings.” Caffrey asked people to describe the combative things that Alzheimer’s victims do.
People volunteered that Alzheimer’s patients have spit on and cursed their caregivers, punched and scratched them, and used cigarettes and hot coffee as weapons. They frequently cry and refuse to take medicine or bathe.
“It doesn’t reflect on you,” Caffrey said, no more than a person declining a treat at a house party reflects badly on the cook or the host. “At some point you need to say I did good work today.”
4) “Alzheimer’s caregivers isolate themselves from family and friends. People then stop calling.” Caffrey encouraged people to remain connected with others through letters, phone calls and e-mail.
3) “Caregivers refuse other’s help. Some say people had not offered to help before. Why now?”
“Caregivers often believe that the offer to help is only presented at a gesture level,” Caffrey said. “In order to avoid burnout you have to ask for help.”
2) “Burnout becomes possible if Alzheimer’s caregivers never use home health or respite services.” Caffrey asked people what an in-home aide or adult day-care might cost. People said $15 to $20 an hour. “As a form of relief, I believe it’s worth every cent,” Caffrey said.
And, the No. 1 cause of caregiver burnout is:
1) “The person thinks he or she must do it all alone.” “This is associated with the role of the martyr,” Caffrey said.
“On the way down is the eroding quality of care, “he added. “I would say try to avoid that.”
For Alzheimer’s disease caregivers, it was lifesaving advice delivered with memorable smiles.
“Dr. Caffrey began to unravel the details of this injury. He broke his neck in a wrestling match as a teenage boy. The location of the injury to his spinal cord was similar to mine, and early on, he could only shrug his shoulders. Describing those days of paralysis with vivid memories, Dr. Caffrey recalled staring at the ceiling counting every stain, every dimple, every crack. He knew them all. Lying flat on his back unable to move, there was simply nothing else to do.
“As Dr. Caffrey told story after story that mirrored my own and recounted the timeline of his progress, I grew increasingly excited. Here was someone who knew what I was going through. Someone who could tell me what to expect.”
Bob Velander gripped the arms of his wheelchair, focused his damaged vision on the man across the desk, and delivered his progress report.
“I thought I’d be more well by now,” he said. “I try hard. My speech is pretty good but my left hand doesn’t work very well. It makes my very angry.”
None of this surprised his listener. Patrick Caffrey met Velander in a hospital room just before New Year’s. The day before Thanksgiving, Velander suffered a life-threatening stroke while undergoing heart bypass surgery. His condition has stabilized, but his impairment was devastating. He couldn’t walk or use his left arm. He could barely speak.
Caffrey, a neuropsychologist, recognized a despondent man. He also saw insight and determination. Velander has been his patient ever since.
Before his stroke, Velander was a workaholic anesthesiologist who drove a sports car and flew airplanes.
His life changed in a day, and Caffrey understands what that means. Thirty years ago, during a high school wrestling meet, Caffrey got slammed on the mat and heard his neck break.
He spent five months in a hospital, initially on a respirator. Functions returned to his right side, but he has difficulty using his left arm, and he wears a brace on his left leg.
“That was basically my introduction to the field of neuropsychology,” Caffrey said.
On the staff of the Mid America Brain & Stroke Institute, Caffrey does psychological testing to diagnose brain malfunctions. He also counsels people with brain injuries, and he understands Velander’s frustration.
“The anniversary of your stroke is coming up,” Caffrey told Velander. “I find that about one month before that date, people get really down. You put a lot of emphasis on the one-year anniversary.”
“Your program is just taking every day one day at a time,” Caffrey said. “Think of it as building something. In history there are stories about cathedrals that took 100 years to build. You tell yourself, ‘I’m going to build on what I did yesterday. This is a project that is worthy of you attention.”
Living well with a disability has been Caffrey’s project since he was 17. It has taken courage, resolve and humor. While attending Central Missouri State University, he related to Velander, he and some friends found themselves walking toward a group of young women. Not wanting to stand out because of his limp, Caffrey instructed his friends to mimic his gait. Everyone ended up laughing.
Caffrey obtained a doctorate in psychology from the University of Missouri. He met his wife, a physical therapist, while both worked at a brain-injury clinic. Caffrey also worked at the Rehabilitation Institute of Kansas City. He recommended that program to Velander.
Velander finished treatment at the institute in August and now does therapy at home with a caretaker while his wife, Jan, teaches school.
Every day is hard work, and the results aren’t always apparent.
“Did you ever consider, Bob, that you survived all you did because you’re strong?” Caffrey said. “I like referring to you as a survivor. Not like the dumb TV show but in a good sense.”
Velander approved of the image. He made an appointment to see Caffrey the following week. Then he wheeled his chair down the hallway, charged with the task of building a life.