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!

How long will this last?

I can't tell you how many times I have had loved ones ask me the question "How long will this last?" or "How long until he is back to normal?".  Unfortunately, there is not a simple answer.  "This" being aphasia, is not a virus or a bacteria that can be treated and just goes away one day.   I wish it were that easy.  Recovery is often a slow, long process and becoming "normal" again may or may not happen.  Each person is different and each recovery is different.   

Recovery is influenced by many factors including the age of the individual, motivation, family support, and the amount of therapy received (often dictated by insurance).   That is not to say, if the individual has all these things going for him that he will be back to normal in no time.  It just means the prognosis is better for recovery.  Obviously, if the individual is not motivated and doesn't want to participate in therapy, then his progress will be limited. 

Recovery may take a few weeks, months or years;  just don't give up hope.

Don't Forget the Caregivers

In my last blog, I talked about the different emotional sides of the people who suffer from aphasia.  While this is a very relevant topic, it is just as important to discuss the emotional sides of a caregiver.  I mentioned last time the man who had severe expressive aphasia (unable to get most of his words out) but was still very happy and positive even though he really couldn't communicate.  Well, it was a different story when I met his wife.  She came in to talk with me and she was the farthest from joyful and positive.  She was completely overwhelmed.   Here she had her husband who had supported her financially, who was extremely intelligent, but now couldn't get across the most basic thought.  Her role in life had completely changed.  Everything, and I mean everything, was now her responsibility.  She was in the process of fighting insurance companies for more visits, paying all the bills, taking care of all his appointments, taking him to all his appointments (he can't drive now), taking care of his business (he was a successful business owner), and the list goes on and on.    Who could blame her for being overwhelmed!   Then there is also the personal side of it.  She had "lost" the man she used to carry on conversations with.  Who she could converse with whenever she needed his advice or just to hear how his day was.  Now all their conversations are one-sided.  He can listen and understand everything, but is unable to respond,  unable to interact with her.   So caregivers, allow yourself to mourn.  What has happened is not fair. This has probably affected you as much as your loved one.  So as easy as it is to tell yourself to "be strong", allow yourself to mourn what has happened.  Don't be hesitant to ask others for help either.  And finally, find a support group.  You need an outlet, someone to talk to that understands your pain.  Best wishes to you all.

Engage, Challenge, and Have Fun

Helping someone with Aphasia can be tiresome.  Recovery is hard work.  Some days are better than others. 

During the recovery process, it is important to continue to challenge your stroke survivor.  I have a couple of ideas that might be fun and will require time spent together (or in a group, maybe). 

Find a topic (hobby) that your Aphasic person likes.  Try to craft a word naming game around that topic while working on something together.

For example, if your loved one likes to cook,  cook something together.  While preparing the meal, choose an ingredient - like pasta.  Put together a list of food dishes that contain pasta - ie. spaghetti, lasagna, manicotti.   Or list the different types of pasta - ie. vermicelli, penne, spaghetti.  You don't need to write anything down.  Keep it casual.  Have fun with it. 

If your loved one likes cars, go for a drive together.  While driving choose a manufacturer - like Ford.  Try to name all the Ford models you can see - ie. Taurus, Explorer, F-150 (that is a mouthful).  Again, keep it casual and have fun. 

You can make bets with each other on who can name the most.  The point is to engage with one another and challenge the aphasic while having fun.  If you can do that, you will really be doing something. 

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. 

Maintenance is Required

In today's disposable society, few people like to talk about maintenance. In a disposable world replacing things is easier than taking the time and spending the money to maintain them.

But some things in life are too important not to maintain.

If you are helping a person recovering from stroke or brain injury you need to realize that maintanence is required and vital to maximize recovery.

What do I mean?

After the chaos has ended and the reality of a different life has become common, holding on to who we are and what we do is important.  As part of the recovery process (whether speech, physical or occupational therapies) incorporate things that were important to the person before the stroke. 

I suggest bringing in photos, personal items, or other items of significance that can be used during the recovery process and will 'remind' the person of who they were and what they did prior to their current condition.

Maintenance of one's self will be required in order to get back to who and what a person was prior to their life changing event. 

These are my thoughts and suggestions.  Let me know what you think or if you have any comments. 

The Need for Stimulation

Yesterday I spoke to a woman regarding her mother in law. The family thought that the mother had recovered as much as she could and yet she was still unable to say single words.

The mother in law was no longer receiving any speech therapy, due to insurance limitations. The mother in law was fully aware of what was being said to her, but she could not respond with words - this is expressive aphasia. It seems that most of the family is okay with this situation.

The woman I spoke to wanted to do more for her mother in law, but was confused on what options were available.

There are many options available. My first suggestion was to find an Aphasia Support Group.

Other suggestions would be to find some Aphasia Therapy on video (see my site at http://www.communicationpartner.com/) or on software packages ( see http://www.parrotsoftware.com/ or http://www.bungalowsoftware.com/). Find some photos of family members and practice saying names. Find photos of well known places or things and help practice saying those words.

I think the most important thing is to provide Stimulation. Recovery is not static. Recovery is either moving forward or back, but it never stands still.

Let me know if you have other suggestions.

June is National Aphasia Awareness Month

June is National Aphasia Awareness Month. The National Aphasia Association has designated June as a time to highlight this language disorder faced by approximately 1 million Americans.

If you have found this article, you are probably very aware of the affects of Aphasia and do not need anyone to highlight this language disorder.

I work with Aphasic persons everyday. I know firsthand that Aphasia affects the communication and not the intellect of the person suffering from Aphasia.

Please help me this month to inform the American public of what Aphasia is and is not.

Please tell people that Aphasia affects about 1 million Americans. Anyone can experience aphasia. Aphasia cannot be prevented. Currently, there is no 'cure' for Aphasia. Speech therapy can help, but the therapy does not guarantee a cure.

Most importantly, tell the public that persons suffering from Aphasia are Okay. Please tell people to allow a little more time to speak to persons with Aphasia.

Ask people to talk to Aphasic persons as much as they can. If this would happen, June would be a happier month for everyone. Happy June!

Kimberly Robbins, MS CCC-SLP,
http://www.communicationpartner.com/

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.