My mother suffered a stroke in August 2000. Her language is completely gone. She speaks in a “jibberish”, but with full expression and enunciation as if she were speaking “real” words. She cannot write at all, but is able to read short articles, catalogs, cards, etc. After such a long time, the frustration level is taking its toll. She is angry that no one listens to her or does as she requests. We have tried all this time to treat her “normally”; she lives in an assisted living center, and cares for her own needs well. Now, however, the lack of communication has made her so frustrated that she is upset with family members (especially me, her primary caregiver). She gets no results from her requests (as we cannot, of course, UNDERSTAND them), and she is distancing herself from me and my family. I am at a loss as to how to treat this new attitude, and fear that we have treated her too normally for too long, and now we may have created a false sense of security for her that may have “backfired” on all of us. What do I do now? When I tell her that we cannot understand her, she reacts as if I am lying to her, and she becomes even more angry at me. She feels, I am certain, that I say that only as an excuse for not doing whatever it is that she wants me to do. After seven years, I am very discouraged . Does anyone have any experience with aphasia for this long? My mother can only utter a few words….two, yes, no, oh, well,I, and my name. That’s it. No writing whatsoever. Any suggestions on my next step in this long ordeal? I am at a loss.

Dear Kit
Your account of the long struggle that your mother and your family have had with her aphasia makes for very inetresting reading . How frustrating it all seems to be. It is true that 7 years is a long time and that patterns of communictaion (or miscommuincation) seem to have set in which are causing a lot of distress. Even though your mother seems to have a very severe communication difficulty and possibly limited insight into the effect that it is having on you, I do think that the picture you describe can be modified. I agree with Judi that some speech therapy at this stage might be just what is needed. It might also help to find a couple of volunteers who can work with you mother and encourage some communication using methods other than words (writing, pointing, drawing)
Many people think that change cannot happen so long after a stroke, but I have seen very importnat shifts happen . These may be not be changes in speech but they can include changes in social networks and life experiences. The goal is to avoid situations and interactions which are going to lead to frustration and withdrawal and try and fidn things that everyone finds fum in, even if these are non verbal.
I urge you to find some speech therapists in your area who will be able to give you some ideas and support.
Thank you for sharing this meassge.
Best wishes
Claire

I am so sorry to hear about your mother’s protracted aphasia. While 7 years is a long time and recovery is easier said than done, I definitely have seen patients improve after long periods of time. This requires an excellent treatment program that uses a clear picture of her communication impairment to build a program exclusively for her. The fact is that aphasia is different for everyone. The key to reducing her anger and frustration is to find ways for her to communicate even with small gains that she sees as significant. You all certainly have reasons to be frustrated. While this seems obvious and perhaps impossible to attain, it has been done. Often, the beginnings involve pragmatics [ PACE therapy ] which is very different from traditional didactic aphasia therapy. It focuses on taking turns, exchanging new information, using various modalities [ gestures, writing, drawing, etc ] . A key is to find in effective perhaps creative ways a modality of communication that allows for her attention as well as clarification, expansion and/or verification. Always, we persist also on attempts to establish speech output. Often in cases such as you describe, apraxia of speech and/or oral movements needs to be addressed. I have found that way too often apraxia has not been addressed effectively. I would be pleased to discuss this further with you if you would like. In any case, I wish you the best of luck.