Aphasia: When the Brain Knows but the Mouth Can’t Say

Being able to communicate your needs and desires is essential to human experience. When a loved one suffers from a stroke and the resulting limitation is speech, the medical condition called APHASIA, a new form of communication develops.  This month, I would like to share some insight from those that have not only experienced aphasia but also their caregivers. 

Aphasia can present as speaking difficulties (the most common), understanding, reading or writing.  The area of the brain impacted, usually the language-dominated left side of the brain, specifically the frontal and temporal lobes.  Remember: Every patient response differently to a stroke.  Speak with your health professionals regarding your loved one’s specifics.

Aphasia can look different from loved one to loved one.  Aphasia can also present as being able to only say a few words, mixing up words, unable to find the words, and unable to understand conversations (especially with many people at a time).

Stroke survivors with aphasia have shared two things that they wanted me to know.  First, we are still here and able to think but we have difficulty speaking – “We are not stupid, we have a brain injury”.  Secondarily, be patient, when you talk to over us or finish our statements, we then need to start all over again.  Excellent advice for all of us.

My husband has times when it is difficult for him to speak, his words become garbled and he tends to shut down and isolate.   What we have found that can make his speech worse is when he is tired, being rushed to provide a response, noisy environments and when he feels stressed (That he feels he needs to communicate as before)

New Ways to Talk, New Ways to Listen

This has been a challenge for me.  Being silent while my loved one struggled was overwhelming but I needed to work on this so that we could build on our new communication.  I have identified a few dos and don’ts that have worked for me and other caregivers as well.

DO:

·         Speak clearly and slowly directly facing them.

·         Short sentences or questions so as not to overwhelm them

·         Yes and No questions worked well for us.  I learned that asking, “Would you like water or tea?  versus “what do you want to drink?” decreased both of our stress level.

·         Patience, patience, patience.  Give them time to collect their thoughts and speak

·         If unable to speak, watch for facial expressions and body language.  Eventually you will develop a system for what is needed through gestures

·         Provide positive response to their attempts but remember they are not a child, so it is important not to treat them as such.

Don’t:

·         Shield them from conversations with others.  You may feel your protection, but you are limiting them.  Explain to family and friends the tips that you have found for your loved one.

·         Finish their sentences, unless they ask.  Remember, when you do they have to restart the process to answer.

·         Exclude from conversation.  When you talk about them in front of others as if not in the room, they can become depressed and withdrawn

·         Correct every mistake.  You will determine based on your relationship when and what needs to be clarified for them.  They are already embarrassed that they have trouble speaking.

·         Rush or pressure them especially in large groups.  Large group communication is fast, and many speak at the same time, this is overwhelming and again they will withdraw or isolate.

How about the caregiver?

Grief, frustration, anger, and lack of patience are common responses regarding communication difficulties.  What many never share is that you have also lost your communication with your loved one, who do you talk to and about what. You are thrilled that they survived the stroke but a part of them is missing.  As a spouse, I get it.  The days of discussing life choices and family decisions are now limited or not at all.

What can help you adjust to this new communication?

·         Acknowledge your feelings that they are not selfish or in any way negatively related to your loved one.  When we hold in feelings at some point they tend to explode, either physically or mentally.

·         Come to terms with the idea that you will see ups and downs with their communication

·         Because they want to isolate, you do not need to.  Make plans outside of the home.  If they are unable to be alone, ask others to stay with them.

·         Join a social network or join a support group with others

·         Speech therapy is essential for the loved one, but I encourage you to attend as much as possible.  You will be able to talk with the therapist and learn techniques that work for your loved one.

·         Look for other ways to communicate.  Several caregivers have shared that eye contact (remember the looks from parents that spoke volumes), music, having a routine and touch have made a difference.

You are not alone and Stroke Caregiver Connection was developed to support you.  If you need additional information, support or resources. Please reach out.