Communication is more than words...or the words we can't find
An SLP's Guide to Navigating Complex Conversations After a Stroke
This is NOT a guide in basic communication strategies. It is a guide in how to have important conversations with your loved ones when aphasia is an added obstacle. And a guide in supporting the WHOLE person.
In this post, we will identify less obvious contributors to communication breakdown and how to minimize them to facilitate better everyday communication. This guide is written for both the person who had a stroke AND the persons who regularly communicate with someone who had a stroke. (For more information on communication changes after a stroke, see my dedicated posts on aphasia, and communication after a stroke.)
The Importance of Having a Voice
I once had a client who mentioned at the top of each visit that he had just had a family argument. After the third time he disclosed this, I decided it must be important if he is bringing this up in his speech therapy session and maybe as a communication expert, I should try to facilitate.
He had expressive aphasia but he was able to tell me more about what had happened. There were family discussions that were causing a lot of tension. He was getting frustrated about his family making decisions for him. He was also upset that in trying to help him organize his finances after his stroke, his family was not filing things the way he wanted and he was not able to clearly communicate his organization system.
You can imagine the additional turmoil this was bringing to the family and how it would be hard to focus on speech therapy after having a family disagreement. And if you have aphasia or know someone who does, you can imagine how frustrated and powerless this situation might make him feel.
When speech therapy is about MORE than finding words
A stroke doesn't just cause a physical or communication impairment. It can affect one's lifestyle. One's autonomy. One's outlook. And one's mental health.
Approximately one third of stroke survivors experience depression. The best treatment and strategies to address post stroke depression may not fully be understood, but there are recognized biological and psychosocial factors to consider. We will focus on some of the psychosocial factors that overlap with communication.
In the aftermath of a stroke, it is common for a person to have a physical disability. Naturally we anticipate there will be grieving for the loss of function, but also for the loss of independence. The stroke survivor may need help to walk, or dress, to write, and so on. If there is a communication impairment, a person may have to rely on someone to interpret their words, guess their needs, maybe speak for them. It is a humbling experience.
Sometimes, with good intention, decisions are made for the person with the stroke. If communication is difficult, we may try to simplify things for them by taking over. We may not want to trouble them, so we don't seek their input. But in our efforts to help, we are excluding the person with the stroke from decisions that directly affect their livelihood. Even when we do our best to include them in every aspect of their care, the choices left after a stroke seem so limited that it still feels disempowering.
If you are the person with a stroke, trying to have a voice in these decisions when there is a communication impairment, can be extremely difficult. It may create overwhelming feelings of frustration, helplessness, exhaustion.
Sometimes an outburst of frustration or an argument about something seemingly trivial may really be about something much deeper. It would be helpful to consider if the person experiencing the stroke is also experiencing any number of feelings of grief, hopelessness, stress from the demand of ongoing rehabilitation, and more. I am not a licensed counselor but I have worked with a lot of stroke patients both in the hospital and after discharge that are trying to navigate all of this, all at once. I have learned it can be helpful to ask the person who had the stroke how they are coping. It seems obvious, but its surprising how many people ignore their feelings so they can keep pressing on. It usually feels good to name what we are feeling and to validate it as a normal response to a difficult situation. Even if someone can't actually name a feeling because anomia gets in the way, giving someone the time and space to grieve goes a long way. And if we can remove some of the pressure and stress from the emotional undercurrent, we may experience greater communication success.
What can we give back?
If you are the loved one of someone who has had a stroke, it is beneficial to take a moment to truly consider the enormity of what was lost, including the loss of independence. Are there any areas where you can give some autonomy back? Are there areas you can let your loved one take lead in their care or in the way their day is arranged? Consider how they can contribute more to the home, the family or their own care. What decisions can you leave up to them? Have a discussion with them about what activities they would like to resume, make a pact and work together to build back independence safely. When needed, provide initial supervision and then gradually phase out as you both regain confidence. Not sure what activities the person recovering from a stroke might be able to resume independently? Ask the therapists involved in their rehabilitation. Speech therapists, occupational therapists and physical therapists want to support you and your loved one in returning as close as possible to your previous lives.
Finding the right words
As a speech language pathologist, giving back independence often takes the form of giving someone the words to self-advocate. Can you help them in finding the words to use in a difficult situation?
I once had a client who was frustrated by his paid caregiver following him around the house. But in the moment, he would become so angry and flustered that he couldn't find the words to tell him. So in speech therapy we practiced several phrases. I suggested "Give me some space." He landed on "Stop pawing at me!" We had a good laugh then practiced several options a few times so that those phrases would be more accessible the next time. This wasn't just a functional communication task. This was giving him autonomy, helping him to advocate for himself.
The problem with aphasia and apraxia is the more frustrated we become, the harder it is to say what we need to say. Naturally, not being able to communicate well only adds to the tension and it snowballs from there. The best tip I offer is Don't Get Frustrated. Of course its not that easy. But there are some ways to decrease frustration.
Practice what needs to be said when tensions are not high so these words are more available in the heat of the moment.
Keep it simple and short and focus on the most important phrases.
If its not too difficult to write or type, write out the keywords or phrases and practice saying them. You can also use these written keywords as a cue, a reminder, if the words escape you later when you need to say them.
If you are the communication partner of someone who has had a stroke, it will go a long way if you give the extra time for someone to put their thoughts together.
Try not finish someone else's sentences, unless this has been mutually agreed upon as helpful. If not, it can be very disheartening.
Remember, communication breakdown is compounded by the grief, stress and frustration of coping with a stroke. Consider ways we can demonstrate support and how we can give back some independence to the person who lost so much after a stroke.
Don't be shy about bringing your most frustrating communication scenarios to speech therapy. As speech language pathologists, we are the experts in communication. It is our job to help you meet your communication goals and facilitate better communication between you and your loved ones. We want to tackle the most meaningful everyday communication needs and help everyone be successful in their home and community.
Have more questions? Good. I hope this got you thinking more about how to support people with aphasia and the role of your speech therapist. Ask away: Amplify Speech Therapy.