Losing friends and connections with family members is not an uncommon occurrence for people living with Aphasia. Let’s face it, communication is an integral part of connecting with people socially and emotionally, and when one side of that communication dynamic is struggling, something needs to change. There needs to be shifts in the roles of the communication partners, and that role change may look different depending on the preferences and needs of the individual with Aphasia. Are they someone who is ok with others helping them out, filling in their missing words or helping to complete their thoughts? Do they wish their communicative partners would be more patient and provide them with more time to come up with their response on their own? It’s possible that the communication partner becomes more of a supportive listener, but this may be easier said than done.
Learning to accept the “uncomfortable” silence
We have been socially constructed to feel uncomfortable with silence, feeling that the silence needs to be filled with sounds…words.
When you’re a person with Aphasia, you may very well have long pauses in your conversation. This is often necessary to allow for increased processing time, and increased time to plan what you’re going to say, access the words that sometimes seem quite far off in the distance, and attempt to formulate a sentence complete enough to bring your thoughts together. So inevitably there will be silence. How can we help our communication partners, our friends and family members, feel more comfortable with this inevitable silence?
Education FROM THE BEGINNING is vital
Education needs to be built into a recovery program from the VERY BEGINNING. This needs to be done early on in the process, before those relationships become devastated and confounded by a mere misunderstanding of Aphasia. The person with Aphasia is not “not listening” to you – they have trouble processing information, and may likely have trouble hanging onto the information they process. Your loved one is still able to participate in conversation about the football games and politics even if their verbal responses and opinions may not be as elaborate or detailed. They’re not mad at YOU when they become frustrated or irritated because they can’t access the words they want – they’re UPSET with the situation.
Although I certainly don’t know from personal experience, I would imagine it would be an extremely aggravating experience to know exactly what you want to say, but be unable to access the words and ideas from one minute to the next. Every instance I experience where I can’t come up with a name or a place I’m thinking of, I honestly think…this is what my patients go through nearly every minute of every day. Although I’m unable to directly relate to their challenges, I have such empathy for their situations and everyday struggles. This education piece can really help to shift the mindset of those surrounding the individual with Aphasia, allowing them to maintain those lifelong relationships with those close friends and family members.
Getting involved in recovery
There is no better way to understand Aphasia than to become involved in the recovery process. Perhaps there are ways friends or family can become involved in treatments, assist with home practice activities, or even help provide transportation to and from therapies, giving them some perception and perhaps a different perspective of what the person with Aphasia goes through. They may develop a deeper understanding, they may observe more of the communication challenges experienced, and perhaps may begin to figure out ways to support and cue the individual to assist them with their communicative difficulties.
Who does the educating?
There is no doubt that Speech Language Pathologists should be the primary educator when it comes to providing support and counseling to individuals with Aphasia and those around them. However, we may not always be able to provide direct education to everyone in the social network of every single patient. We may need to educate others on providing education themselves. Also, depending on who you may be educating, the tone and topics may need to be adjusted. For example, educating the 5-year-old son of a mother who has Aphasia will likely be very different from educating the 82-year-old husband of a wife with Aphasia.
What should the education entail?
Although the topics may be consistent regardless of who you’re speaking with, the way you present them, including the terminology used and the details included, may vary depending on the specific individual you are educating. Some of the main topics that I feel are crucial to truly understanding the dynamics and challenges of Aphasia are:
What is Aphasia?
What to expect during the recovery process, including the variability and the unknowns
Ways to support someone with Aphasia (i.e. breaking apart longer sentences with pauses, writing choices, encouraging multiple modalities, etc.)
How to create aphasia friendly materials and environments
The emotional impact of Aphasia
Reading and writing supports available
Local support groups or social groups
Finding a new social group….only knowing you WITH Aphasia
What if you’ve been living with Aphasia for over 5 years, and you feel the damage with those old relationships is not repairable. Does it make more sense to create a new network of friends? To perhaps find friends and create a network of people who did not know who you were before. There is no longer a comparison of what you once were and who you are now, which may make the overall expectations more reasonable and puts less pressure on you as the person with Aphasia. You’re no longer trying to be who you were, you’re simply living as who you are now. This new friend knows Bob as the Bob with Aphasia...not the Bob “before his Aphasia.”
Finding a social network of people who are experiencing similar challenges, who can help you find a clearer path through the winding road of recovery, and support you because they know what you’re going through, can be very powerful also. Social support groups are not for everyone, but finding that connection with someone who knows you for who you are now, not for who you used to be, can be enlightening. However, this “new” group of friends does not have to only include individuals with Aphasia – again the person has met you WITH Aphasia - they know you for you, they want to get to know you for you, regardless of your communication difficulties.
Caregivers and loss of social networks
How hard is this on the caregivers of those living with Aphasia? The impact of losing social networks is experienced by caregivers as well. These people were their friends, too. Losing old friends because charades is not something they want to play every time they visit you. They don’t want to feel that awkwardness when Joe can’t find the words he wants to say and is unable to communicate his message, and becomes frustrated. Joe can no longer tolerate being in noisy environments, so sitting at the bar where they used to meet for lunch is no longer an option. How do we create a new dynamic with our old friends?
Again, education is a huge missing piece of this puzzle. Perhaps if the couple you planned to have over for lunch had a deeper understanding of Joe’s challenges, and why it’s challenging for him to process conversation in a noisy environment, they may actually be the ones to suggest the quieter restaurant next time you meet. They might even call ahead to the restaurant and make a request for a corner table, or less noisy table, in the restaurant. If our friends and family members are not educated on the challenges of living with Aphasia, then how can we expect them to welcome on this challenging endeavor with open arms while being in the dark?? Let's all work together to improve upon this education piece,
allowing our individuals with Aphasia to feel more included and less isolated.