Caregivers Can Help With Aphasia
- You ask your spouse for a plate, and he hands you a cup.
- Your spouse seems to get “stuck” on the same word or phrase.
- Your spouse can say words, but her sentences don’t make sense.
That’s Aphasia: a language disorder that results from damage to parts of the brain. It can affect all modes of language including speaking, writing, gesturing, understanding what others say, understanding writing, and using numbers.
Aphasia often hides people’s thoughts, ideas, personality, intelligence and competence – they know what they want to say, but can’t always get the words out.
People who suffer from aphasia can have difficulty understanding others, particularly strangers. Or, they can follow the gist of a conversation, but lose track easily, or forget the beginning of a message before reaching the end of it.
They may be able to say individual words, or parts of words, but struggle to complete the entire word or sentence. Or, they may speak nonsense quickly. And background noise or lively conversation among a group of people can really exacerbate the difficulty they have understanding conversations.
“Many times, too, a person with aphasia is so focused on themselves, they are unable to see that their caregiver is overwhelmed. The person with aphasia can’t help it; they’ve lost a lot of control in their lives between the loss of communication and physical disabilities. They are just trying to survive,” says Mimi Block, M.S., CCC-SLP, clinical services manager, University of Michigan Aphasia Program.
“And even if they could recognize how much their caregiver is dealing with, they cannot express their gratitude or appreciation,” she added.
It can be an enormously frustrating condition, for both the individual and the caregiver.
The University of Michigan Aphasia Program (UMAP)
The University of Michigan Aphasia Program (UMAP) is the oldest and most effective program of its kind in North America for the treatment of aphasia. Established in 1947 to assist World War II veterans who sustained injuries in combat, UMAP has successfully treated thousands of individuals, offering as much speech-language therapy during a six-week session as a person would receive in one year of traditional therapy.
Caregiver education and support is a critical component of the UMAP.
This past summer, UMAP gave Robin Cox, wife of a (retired) National Guard Lieutenant Colonel with aphasia, the tools to help her husband with his therapy and the insight to help herself as his caregiver. Her husband Mark suffered a stroke in March 2009, just 30 days before he was due to be deployed to Afghanistan.
“I know it’s a cliché, but UMAP taught me this is not the end of the world, there is light at the end of the tunnel, and the little progress we make each day brings us that much closer to our goals,” Robin Cox said. “And those little improvements are exponentially more important for the caregiver,” she added. “They bring us ten times the joy.”
Celebrate Small Achievements
One morning, not too long ago, Mark found his glasses after looking for them for quite some time.
“He said, ‘I found them’ and I said, ‘Say that again!’ and he did! And then I made him say it again. It was one whole, complete sentence. It’s those little moments you must celebrate,” Cox said.
During the six-week session at UMAP, there are five caregiver meetings which focus on:
- Acquiring a better understanding of aphasia, and the physical disabilities associated with a stroke (the most common cause of aphasia)
- Facilitative conversation and other ways to communicate with people who have aphasia
- Effective communication techniques and strategies
- Practicing new communication skills using facilitative conversation
- Options for the future
“Ongoing education is essential for the well-being of the loved one with aphasia and all the family members,” Block says. “The caregiver needs to connect with the speech-language pathologist who sees their loved one to learn about aphasia and specific techniques to communicate with him or her.”
Recommended: Shadowbox Press Conversation Cards for Adults
To prompt conversation, Block encourages caregivers to use “topic cards,” which are lists of words or pictures—like family, sports, friends, birth dates, hobbies, maps, a calendar—as a starting point to determine what the person wants to talk about.
“There’s also the WH Chart—who, what, when, where and why, that can be used to get the person thinking in terms of sentence structure,” Block said. “The more information that’s available to them, the more successful they will be.”
“You have to keep digging to find the right way to get the point across,” Robin Cox says. “It’s more than just talking. You can use pictures, calendars or write words on paper. You’ve got to take a deep breath and be patient. Yelling isn’t going to do it. You have to try all of your options.”
Be an Advocate
“I watch to see what the therapists are doing, and I insert their techniques into our daily routine at home,” she said.
Keep Life as Normal as Possible
Lulu Smith also tries to keep their lives as normal as possible. Louis is a legendary jazz trumpeter with an international reputation and many major recordings, and she regularly takes him to jazz festivals and clubs where he can interact with other musicians. They’ve always been great travelers, she said, and they go to Paris in October each year and to Mexico for two months in the winter.
“I never get someone to ‘sit’ with him. We’ve always done things together,” she said.
Robin Cox recently encouraged her husband to go with her to their 11-year-old son’s football game.
“He didn’t want to go at first. Since he had his stroke, he’s lost some endurance, too. But he ended up staying for the whole game. I think Mark realized he can socialize, and he can talk with others—not just his wife, his brothers, or people who are close to him. Physically, he was tired, but it was great for his spirit.
“He was put out of his comfort zone. I think that’s what a caregiver does. We try this, and if it doesn’t work, we’ll try something else,” Cox said.
“It is so important to keep trying,” says Joyce Zeigler, whose husband Mack suffered a stroke in 2004 and who has participated in two UMAP sessions in 2006 and 2008.
“Mack continues to make progress. I encourage people with aphasia and their loved ones to be patient and have hope. Mack and I have faith that more progress is in his future. We take it a day at a time and look forward to each day.”
Lulu Smith adds, “You must understand it takes a long time to have success. You have to keep working and working, and never give up. You’ve got to stick with it.”
Adapted from an article by Joanne Marttila Pierson, associate director of the University of Michigan Aphasia Program
10 Dysphasia Communication Tips
Amanda Sheridan, clinical fellow at the Mary A. Rackham Institute’s University of Michigan Aphasia Program (UMAP), shared these suggestion for talking with someone who has aphasia. These suggestions were gathered directly from UMAP’s clients who have aphasia. They may be helpful for family members and caregivers.
- Please take the time to sit down and talk with me.
- Slow your rate of speech. Say one thing at a time. It may take me a little longer to understand what you are saying.
- Give me plenty of time to talk. It may take longer for me to find the word or words I want to say.
- Be flexible. I may have another way of expressing myself. Perhaps I will write, use an assistive communication device (e.g., ipad, communication book), gesture, or draw.
- Be honest. You may not understand me. Let me know. I will try again.
- Please look at me as we talk. So much can be shared through facial expression. This can help me understand you, and you understand me.
- Ask me yes/no questions. It may be easier for me to communicate by saying or gesturing “yes” or “no.”
- Write down key words and numbers. This may help me understand you.
- Find a quiet place to talk. Noisy, busy environments make conversation difficult.
- Keep your sense of humor.
It is also a disturbing reality that the likelihood for therapy frequency and length of care is contingent upon either the level of competence or comfort level of the speech-language pathologist or the financial policies of each institution.
Often it has nothing to do with the severity or need for speech therapy. Our health care system is in no position to bankroll the long-term therapy that many people need who have moderate to profound speaking difficulties.
The goal of The Teaching of Talking is to make sure that any loved one, caregiver or speech-language pathologist is thoroughly knowledgeable in methods to help people improve talking since it is never known when the plug will be pulled on speech and language therapy services.
Ittleman says: “I see hundreds of people with speech and language difficulties each year. By reading and applying The Teaching of Talking, you will have the confidence to help your client or loved one, no matter what the insurance company or institution does.
By learning to do what is in Teaching of Talking you will be more self-sufficient and will not have to rely on anyone to provide your loved one with expert speech therapy.
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