Aphasia Caregiver Asks for Help

I got an email from a person two days ago that said her husband had a stroke 3 years ago.  He suffers from expressive aphasia and she is his primary caregiver.  She asked if I had any suggestions for help.  She needs help.  She is absolutely worn out and doesn't see an end in sight.

I thought of all my practiced speech pathologist answers.  I listed out a few resources for her and then I thought I might ask for your help.

If you have a moment, what suggestions would you give to someone who is the primary caregiver for an aphasic individual?

My hope is that your comments may help her and anyone else who may read them.

Thank you!

The Emotional Side of Aphasia

As a speech therapist, I work with individuals with aphasia almost every day I walk through the hospital door.  In therapy, I work hard on helping each one improve his/her communication skills but I also am there as an outlet for the emotional side.  As you can imagine, it is very frustrating for a person to be sitting at a table in a small room for an hour of his/her life trying to "relearn" how to talk.  When just a few weeks ago, talking was a skill never thought about.  You just did it.  I have a client now that cries almost every time we meet.  She even jokes about it at times saying "Well, I'm going to go cry now" when walking back to the therapy room; or points to me saying as she's laughing, "She's the one that makes me cry!".  She is a delightful woman and even though she jokes about the crying, it is a real part of her life.

It's amazing to me to see how drastic a difference people are in their emotional way of dealing with their loss (of words).  On one hand, you have the lady I describe above who cries frequently as she can't get some of her words out (although she is able to get her message across most of the time).   Then on the other hand, I have 2 clients who seldom are able to get a single word out, but are so joyful and positive all the time.  Yes, they do get frustrated when they can't get their messages across, but just seem to blow it off and move on never missing a beat.  So positive, so happy to just be alive.  I have to say, I don't think I would be that way if I could no longer communicate effectively.  They are truly an inspiration to me.

So there is not just one emotional side of aphasia.  Each individual handles his or her loss differently.  Help the individual deal in his/her own way.

Who has heard of "Aphasia"?

It is amazing how many phone calls I receive with people saying "I had never heard of aphasia until my husband (or wife, sister, brother, mother, etc.) was diagnosed with it".  The truth is you don't hear the word "aphasia"  in the newspaper or in the news or in everyday conversation.  This is unfortunate.  Aphasia affects approximately 1 million Americans and is more prevalent than Parkinson's Disease, Cerebral Palsy or Muscular Dystrophy. Yet, most people know about those diseases.  Why is "aphasia" so not known??  My husband showed me an article in the Fortune magazine yesterday about a very successful businessman who had a stroke.  It told how the stroke affected his right side of his body and that he couldn't get his words out anymore.  It told what a difficult time he had communicating verbally and the struggles he went through during his recovery.  But not once did the word  "aphasia" occur in the entire article.

Another example is Senator Giffords who suffered a gunshot wound to the head earlier this year.  Her horrible story was all over the news for months, following her progress step by step.  Although she had all the symptoms of aphasia described in the newspaper articles and on the news, again I never heard the mention of "aphasia". 

This is why no one has heard of aphasia.  I wish I knew why the media stays clear of the word.  It would be helpful to others if it were discussed more so people could learn about it before it affected their lives.  Keep your eyes and ears open for aphasia in the media.  I would love to hear back if anyone sees or hears of it.

Masking Your Aphasia

Aphasia affects people in different ways.  In my practice as a Speech-Language Pathologist, I have seen various severities of aphasia.  These severities range from the individual who cannot say a single word all the way to the person who can communicate his/her thoughts but may stumble on a few wording finding episodes.

I recently met a woman who had a stroke a couple of months ago and now suffers from aphasia.  From afar, she looks like she has it all together: nice looking, stylish dresser, nice family, great job, lots of friends.  She even can converse in small talk with you to where you would never know she had aphasia.  She does well to "mask" her aphasia.  How?  Well, she doesn't initiate any conversations with anyone or include herself in any group activities, and has actually removed herself from activities she previously enjoyed because she does not want anyone to see her limitations.  She knows that if you were able to sit with her and really talk with her you would see how much of a struggle it is for her to really carry on a meaningful conversation.  It is very frustrating for her.  In her mind, she doesn't want anyone to know that she no longer has it all "together".

So, is "masking" her aphasia and avoiding people and situations the right thing to do?  In my professional opinion, absolutely not.  I understand the pride thing, I really do.  However, you should not cut off your friends and stop doing things that make you happy because you are afraid of what people think.  You have to continue living your life.  Also, from a therapist's point of view, the more interactions and conversations you have with others, the more likely you are to progress in your speaking ability.  I know this is easier to say than do, but I definitely believe that the quality of life is more important than the quantity.

Be Patient - Don't Frustrate the Person with Aphasia

Last week, I spoke to a woman with an adult son suffering from Aphasia.  He had a stroke about a year ago and had been living again with her and his father while continuing his recovery. 

The lady told me that her son wanted to move out because he couldn't stand to around her husband anymore.  The father frustrates the son on a daily basis by being impatient.  He won't let the son talk.  He tries (unsuccessfully, apparently) to finish the son's sentences.  The son just wants to recover.  He doesn't want therapy at home from his dad.

As a therapist, I hear similar stories more than I like.  If you want to support a person suffering from Aphasia, Let them talk.  I will repeat that, "Let them talk".  I know it sometimes takes a long time.  To be honest, sometimes it seems like it will take an eternity if you let the person finish a sentence. 

Be supportive.  Be attentive.  Learn to be a good listener.   Let them finish.  Don't frustrate them by trying to guess what they want to say.  Don't finish sentences for them.  Relax and listen.

We all want to communicate.  We all want to share and be heard.  Sometimes, the toughest thing a caregiver can do is Nothing. 

Listen more and you will be an even stronger support to your loved one with aphasia. 

Aphasia Isolates People

According to a 2004 survey conducted by the National Aphasia Association (http://www.aphasia.org/), people with Aphasia feel isolated and therefore isolate themselves from others.


The survey respondents said the following:

95% said people with Aphasia tend to feel isolated because of their Aphasia
97% said people tend to avoid people with Aphasia all or some of the time
40% of people with Aphasia had no contact with others with Aphasia


If any of the above statements describe you or your loved one suffering from Aphasia, please realize that you are not alone.


The last statement regarding the 40% of people with Aphasia that have no contact with others suffering from Aphasia is most troubling to me. If you are a caregiver to someone with Aphasia, please, please try to get them to an Aphasia support group. If you live in a metro area, you can probably find a group. If you live in a less populated area, look online.


Go to the National Aphasia Association website (http://www.aphasia.org/) to find someone in your area to help.


Your goal as caregiver should be to re-integrate your loved one into our communication-filled society.


You will probably need to take 'baby steps', but you must take steps. As you know, trying new things can be awkward, intimidating, and stressful, but this process is vitally important to the recovery process of your loved one.



I wish you the very best in your efforts!


Visit my website, http://www.communicationpartner.com/, if you need more aphasia therapy for expressive aphasia. We produce aphasia therapy on DVDs for effective, easy to use therapy solutions.