Alzheimer's Caregivers Need
A Dose Of Rest And Humor
By Lewis W. Diuguid
The Kansas City Star
May 4, 2005

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 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.

The No. 1 cause of caregiver burnout is the person thinking 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.

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