Aphasia Caregiver Project

To continue our topic about those of you who have a loved one with aphasia.... I am working with folks who come to the Aphasia Center program, as well as with the Suncoast Aphasia Support Group (a wonderful group of people whom I must thank for helping me get our support group going) on the caregiver project. When I have a person with aphasia who comes to the intensive aphasia program, there are always caregiver or spouse dynamics that must be worked through to make progress with the aphasia. Frequently anger or grieving is still present, and there is resentment amongst family members and the person with aphasia. These negative emotions may not be obvious on the surface, but they can have a huge impact on progress at the program or on the relationship as a whole. Persons who suffer a stroke and have aphasia are twice as likely to get divorced as someone who just has a stroke without aphasia. This tells us that aphasia is a stressful occurrence for everyone involved!

So, because I work with families who have a loved one with aphasia, I see many of the same issues occurring over and over again. It seems very few families are given hope, advice, useful information, or resources when they leave the hospital. Often I am the first person in years to actually explain aphasia or apraxia to them in a meaningful way. I may be the first person who helps the families understand all of the aspects of aphasia. A family recently wondered why the person with aphasia didn't just point to their boat and make cleaning gestures if he wanted to have the boat cleaned. Instead, he started looking through the phone book. The family finally guessed his intent, but was expecting more information. Typically, the person with aphasia doesn't know that they aren't giving you enough information--we are all expected to play 20+ questions without clues! The person with aphasia has problems with speech (in some cases) AND language, so they cannot simply play charades effectively and act out what they want as though only the speech is affected.

In an effort to help more caregivers and persons living with aphasia understand the disorder, provide hope and inspiration, and show that you are not alone (although it may feel that way), we are making a caregiver manual. This manual will have stories of couples and families and their journeys through the unfamiliar landscape of aphasia. If you'd like to contribute your story, please email me at dr.lbtobin@gmail.com and I will send you some questions to help you think about your story while you write it. My hope is that caregivers can then read these stories and identify with someone in the book who may have a similar situation. Send me your ideas!

Dr. Lori