Aphasia Shouldn’t Stop Communication

“The single biggest problem in communication is the illusion that it has taken place.” —George Bernard Shaw

Several years ago, my youngest daughter, Kat, phoned me distraught about a conflict at work. Before she started talking, she clarified, “Mom, I don’t want you to solve my problem, just listen.” She stated her expectation for me in the conversation and set the parameters. By defining my role, she allowed me to focus my energy on listening, showing compassion and eliminated the pressure to outline an appropriate response.

During the emotional days and nights in the hospital after Kari’s stroke, many conversations required me to define my role. When the doctors spoke, I listened with the attention of a conscientious student trying to absorb every bit of information. When therapists demonstrated a procedure, I took notes and pictures so I could support Kari and reteach techniques as needed. When asked how to complete insurance and financial paperwork, I responded with knowledge from experience. When friends asked about Kari, I paraphrased recent events knowing they didn’t need or want to know all the ugly details. When I talked to Kari, I assumed the role of loved one.

Since fluid verbal communication remained out of reach for Kari, body language and facial expressions communicated her needs and desires. When Kari showed signs of stress because she couldn’t get her point across, the phone conversation with my younger daughter replayed in my head, reminding me of the importance of simply listening. I could not solve Kari’s problems, but I could sit beside her and offer compassion. It took time for her to find the words to convey meaning, sometimes we played charades, and occasionally, we failed to convey a message, so I smiled, nodded, and waited.

The most important ingredient for a successful relationship is communication. Unfortunately, most people believe once they’ve said something, they’ve communicated their thoughts. Wow, that is a misnomer! Effective communication requires so much more. The obvious components of the process are the sender and receiver. Somebody must talk and somebody must listen. The success of the dialogue depends on the clarity and interpretation of the message.

Think about the noise that interrupts or confuses a message. The massive amount of noise Kari had to contend with was overwhelming. It came from external and internal sources. Once while Kari visited with a friend, her husband, Dan and I whispered in the corner of the room, being careful to not interrupt. However, the whispers sounded like drumbeats overwhelming her thoughts as she worried that we discussed something she needed to know. Our murmurs drowned out the casual conversation between her and her friend. For a long time after the stroke, fear lurked behind every conversation and confused meaning.

Other times, simple movements or background noise confused the message. We discovered a stroke patient can be easily overstimulated. In Kari’s case, it wasn’t necessary to talk slower or louder as hearing wasn’t the problem but comprehension. While a strong functioning brain can block out distractions, a traumatized brain doesn’t have the ability to discern what is being said and suppress what is insignificant. Multitasking became a thing of the past.

After lunch one day, Kari said she wanted to go outside. As she transferred to her wheelchair, a complicated process itself, I asked questions about where she wanted to go. Is a jacket needed? Should we take a game? I couldn’t understand why she became agitated.

Kari was thinking about how to sit up in bed without assistance from her uncooperative right arm. Then she remembered she must wear the arm brace. Prior to putting on her shoes, she had to put on the leg brace. By sitting on the edge of the bed at an angle, she tactically pivoted into the waiting wheelchair. All the while being sure to not catch the feeding tube on anything as she checked and rechecked that the brakes were secure on the chair. In the middle of these maneuvers, she nonverbally reminded me to get her sunglasses – oh yes, the sunglasses that blocked out the bright lights that caused extreme headaches.

Upon examination, the anticipation of the endeavor and the energy needed to make the transition caused my questions to be monumental interruptions. The noise in the conversation made communication ineffective if not impossible. So, my three simple questions were in fact not so simple after all. Slower and louder would not have made a difference. Eventually, we did discover the technique of chunking information and activities by addressing one topic at a time. A brain that is recuperating must be allowed time to process and react.

Next, I had to learn to give and request feedback to check for understanding. Statements that once seemed routine triggered frustration. Prior to the stroke, Kari and I could finish each other’s thoughts. Now miscommunication was a daily occurrence. Paraphrasing how I interpreted her message helped clarify not only what she said but what I heard. Questioning my inferences increased understanding. Caution and compassion decreased aggravation. But understand, our system was not perfect, so feelings of discouragement occurred more than I like to admit.

For instance, when Kari would ask about one of her girls, I had to be sure which child she was asking about. Since names were exceptionally difficult for her, the more I repeated the child’s name and referenced facts about her, the easier it was for Kari to understand. Feeling like two trains passing in the night, we sometimes were on different tracks.

When I thought I understood her meaning, I would continue the conversation only to find out later my assumptions were way off base. Now I realize why she went silent; it required too much energy to correct my assumptions. Other times, I would act like I understood when in fact I didn’t. She must have felt so patronized while I felt so inadequate. But we did our best at communicating with our hearts.

Even when we started out on the same track, if one of us of shifted the topic, the other remained behind. We forgot to push the track change switch. During conversations, we learned to forecast the direction of the dialogue. Like a road sign that tells there is a turn up ahead we implemented cue to clarify the message. It is not unusual for dialogue to crash into confusion. When I learned to provide feedback to focus us and asked question, the chance of success increased.

Remember, relationships are difficult. None are struggle free. So don’t expect the bond between stroke victim and caregiver to be any different. I found myself trying so hard to do everything right, anger at myself consumed me when I made a mistake. I had to learn to accept and forgive myself over and over again. The same was true for Kari. Once when I asked her a question, she replied aggravated, “I already told you!” My first reaction was to think she was being rude and then reminded myself patients afflicted with aphasia and apraxia are literal and can sound blunt in their responses. A simple nod of my head offered a sign of understanding – understanding that this is difficult but together we will conquer the challenges.

After a stroke, life becomes one long learning experience with no concrete answers. However, building on others’ successes helps both the patient and loved one. I’ve found helpful approaches to ease the struggles of communication.

Use nonverbal language when words are not available.

• Gather pictures of the most common nouns to use in communication. Sometimes pictures do speak louder than words. When Kari couldn’t find the word for something she needed, she held up a picture.

• Facial expressions communicate emotions. Pay close attention to feeling and respond appropriately.

• Point at items and use props to communicate meaning.

• Rely on hand gestures to supplement words.

Eliminate distractions that interrupt the conversation.

• Wait until the patient is ready to be converse. If they are involved in another event wait until the time is right.

• Shut the room door to block noise.

• Turn off TV, radio, and other electronics

• Remember noise can be internal or external for a patient. Internal distractions are concerns, fears, comfort, and readiness.

• Do not hold side conversations.

• Decrease movement whenever possible.

Be sensitive

• Talk in a normal tone and use adult language. Aphasia doesn’t affect hearing or intelligence.

• Do not pretend to understand when the message is unclear. Be honest and find strategies that work.

• Allow more time for processing. Do not answer for the patient.

• Chunk information and when providing directions start with one simple step.

• If you are not sure. ask.

• Include the patient in the conversation. Do not talk about them, talk to them.

• Memories can be out of reach don’t reference events from the past to increase understanding.

• Downplay or ignore mistakes as there is no need to correct something if the meaning is clear.

• Be silent and patient.

Ask questions to check for understanding

• There’s a difference between not being able to give an answer and not knowing the answer. Be sure you understand why your loved one is struggling.

• Ask clarifying questions. If there is a roadblock don’t persist and increase frustration. Just because the question is rephrased doesn’t mean it becomes clearer.

• Do not assume comprehension.

• Ask questions that can be answered with "yes" or "no."

• Provide simple choices that reduce the need to retrieve words.

Practice

• Create real situations for communication. Aphasia patients communicate better when relaxed and in a natural environment.

• Share information and ask for input to empower.

• Encourage independence and don’t overprotect. When learning language numerous blunders occur that are part of the process.

• Do not stop communicating in an attempt to protect. Practice is necessary to stimulate and retrain the brain.

Kari’s journey is shared in a book on Amazon. The stories begin when her father and I receive a phone call saying she is in the hospital and follow our family through her trauma with a focus on how we all learned to accept help and never give up.

Understanding the Power of Not Yet: Accepting the Challenges of New Beginnings