Got ____? Aphasia: At a loss for words
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Got ____? Aphasia: At a loss for words

Help for aphasia caregivers

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Above, members of the caregivers group are pictured in front of jigsaw puzzle art they completed. Seated from left are Jacqueline Staudt, Lee Kelly, Joyce Zaccardo, and Jerry Lieberman; standing from left are Elaine Adler and Sheila Dempsey. Miryam Wahrman

Mary Slade, a panelist at an Adler Aphasia Center information session who is recovering from aphasia, observed, “It takes a family time to accept that a person had a stroke and has aphasia. When you first get sick there is often anger, confusion, and frustration.”

Elaine Adler became a caregiver when her husband Mike had a stroke. “When the breadwinner becomes aphasic, what happens to the family?” Adler asked. “The spouse has to take care of the aphasic and the family…. I realized how important it is to help the caregiver.”

The center has a support group for caregivers, run by Sheila Dempsey, a life coach. Caregivers in the group reported that they typically drop their spouses off for programs and then go out for breakfast together. Then they return to the center and join Dempsey for a discussion of issues related to being a caregiver.

Dempsey said that talking to others who can understand the issues and stresses of caring for an aphasia patient is very helpful. “You share things and you find out you’re not alone,” said Lee Kelly of Norwood, who cares for Jack, her husband of 51 years.

Dempsey said that a major challenge for caregivers is to understand what the person is trying to say and to keep in mind that “these are survivors, not victims. It’s a long, arduous journey.”

Kelly’s husband, Jack, has been recovering for the past 12 years. “Jack can’t speak but he can sing. It’s a different part of the brain,” she said. “Jack says 1, 1, 1, 1. A person with aphasia thinks they are saying something [meaningful]. It’s called perseveration.” Even though their speech sounds strange, “it’s important to know their intellect is not affected,” she said.

Jerry Lieberman, of Yorktown Heights, N.Y., has been married for 52 years to Jeannie, who had a stroke 12 years ago. “Jeannie taught ESL [English as a Second Language]. Her whole world was speech. She’s bilingual,” said Lieberman. “It’s important to understand that all these people are very alert.”

“Jeannie will say ‘nay, nay, nay, nay, nay,’ and I can’t figure out what she wants. It’s hard to keep your cool all the time,” he said.

Lucille Faso, of Norwood, cares for Ronald, her husband of 52 years. Her husband has “automatic speech,” which means that he says random words without intending to.

Jacqueline Staudt, of Secaucus takes care of Fred, her husband of 54 years, who was a truck driver. He used to participate in truck rodeos where he won prizes for maneuvering giant trucks.

Joyce Zaccardo, of New City, N.Y., is caretaker for George, her husband of 48 years. George worked for the United Nations, where a major part of his job was speaking. “He can’t read or write or speak, but he can sing,” she said. “He can repeat everything you say to him, but he can’t get it out on his own.”

“When they come here they feel normal,” Zaccardo said of the center. “They feel important again. They help each other.”

“I feel that I can always see some improvement. It’s not a downhill; it’s an uphill,” said Leiberman.

How to help a person with aphasia communicate
The Adler Aphasia Center offers literature to explain the disability as well as guide caretakers and others on communicating with aphasic people. Tips on communicating with aphasic people include:

“¢ Reduce background noise.
“¢ Speak slowly in a normal tone of voice.
“¢ Simplify conversation. Use short, simple sentences. Stay on one topic at a time.
“¢ Have a pen and paper handy to write down key words while you are talking.
“¢ Ask, “Am I being clear?” or “Am I talking too fast?”
“¢ Have patience. Wait, listen, maintain eye contact.
“¢ Acknowledge the speaker’s frustration. Do not pretend to understand if you don’t.
“¢ Ask “Can you say it another way?” Gestures, drawing, or writing could help.
“¢ Ask simple yes/no questions.

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