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!

Talk about something you love

My post today is quite simple, but can be very impactful. 

Admittedly, it may be difficult to talk to a person suffering from Aphasia.  Sometimes finding something to even talk about is a struggle.  As a caregiver and supporter, find a topic that the aphasic individual loves (or loved).  Talk about that topic. 

This may or may not be easy for you.  I said it was simple, not easy.  You will most likely ask a lot of questions and struggle to listen. 

We all love to talk about what excites us or what brings us joy.  Encourage those individuals that you support to talk about what they love.  Then, listen. 

Aphasia Awareness Broadcast

The National Aphasia Association (NAA) just announced notified that NAA Board Member, Peter Turkeltaub, M.D., Ph.D. and Advisory Council Member, Audrey Holland, Ph.D., will be featured on The Diane Rehm Show on Thursday, September 26th at 10:00am EST.  Drs. Turkeltaub and Holland will be discussing aphasia research and spreading awareness across the airwaves!  Listen live through the website (http://thedianerehmshow.org/) or on your radio if you live in the Washington area on WAMU 88.5.

Use Your Resources

In my last post, I talked about Medicare limits and how therapy is often forced to end way to early.  This is often true of private insurances too.  Right now, I  am treating a young 22 year old college student who has a severe brain injury.  He honestly could use 8-12 months of speech therapy, but unfortunately his insurance has limited him to only 18 visits.  Not 18 weeks, visits.  That equals to 6 weeks at 3 times a week.   Not fair.  I urge you to become familiar with your insurance benefits before you need them.  How much will they pay for inpatient rehab stay if needed?  How about outpatient?  Home health? 

So, what to do if this happens to you or your loved one?  Look at all your options and resources.  If you live in or near a larger city with a University or College, they may have a Speech Pathology Program (Graduate or Undergraduate) there.  This is useful b/c the students have to have so many therapy hours to graduate and so many times they have their own clinics for therapy.  These clinics are a fraction of the cost of private pay therapy, yet still good therapy b/c although they are students, they have a clinical supervisor critiquing them.  There are also many times group therapies as well as individual sessions.  Another resource is support groups.  These are great not just for the spouse, child, mother, father of the individual with aphasia, but also for the individual himself.  Use this as a therapy time, attempting to communicate to others using gestures, writing, and words.  Figure out which communication mode works best.  Last, check out home therapy products.  I personally recommend Communication Partner DVD's (being the creator) which is actually a "therapy at home" resource.  Sit back in your recliner and participate along with the DVDs which provide countless hours of therapy sessions.  (Visit the site at www.communicationpartner.com).  There are also great apps, such as Tactus which provide help with getting your words out, understanding language, reading and spelling.  Also, check out Lingraphica's apps, which are great for communicating needs and basic thoughts.  Don't be afraid to Google  "Aphasia resources" and see what comes up. 

Don't give up hope just because your insurance has run out.  Continue the journey to recovery.

Medicare Caps

Medicare Caps have been a hot topic since October of last year.  If you or your loved one has suffered any type of illness or injury that required outpatient rehabilitation, then you should know about it.  Unfortunately, the news is not good.  Medicare has "capped" their payment for outpatient rehabilitation to $3700 for Occupational Therapy and $3700 for Physical and Speech Therapies combined.  What this means, is no matter how much therapy you may need, once you reach that dollar limit, your therapy is over (unless you want to pay out of pocket, of course).  This has left many, many people with no choice but to discontinue therapy because of the inability to pay.  Furthermore, many are forced to choose which discipline they need more, physical or speech therapy, since they share money.  So, is it more important to you that you be able to walk across the room or communicate your thoughts?  As ridiculous as that sounds, that is what Medicare has turned it into.   Would you rather use your Medicare money with physical therapy or speech therapy?  I work with patients all the time that have to ask themselves that question. 

My advice is that if you are in this scenario, look for other outlets once your therapy has ended.  Check out apps, computer programs, software, workbooks, therapy sessions and group sessions at local universities that have Speech Pathology programs (you can often receive therapy with students for little money out of pocket), post therapy exercise programs and support groups.  I will talk next time about specifics on those.  In the meantime, write your local senator about the Medicare Caps and how it has affected you or your loved one personally.  It certainly cannot hurt, and who knows, if we yell loud enough, we may see a change for the better one day!

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.

Plateau? What Plateau?

I spoke to a man last week about purchasing my aphasia therapy DVD's for his wife.  He told me that they were trying everything they could think of to provide therapy for his wife within the first year.  He said that his wife's speech therapist had told them that they had a year to eighteen month window in which all recovery occurs.  After that time, recovery seems to plateau and no longer progress.

Plateau?  What Plateau?  Who is still talking about Plateaus?  I suggested that he pick up the great book by Jill Bolte Taylor - 'My Stroke of Insight'.  She was a medical research doctor at Harvard when she had her stroke.  In her book she says that it took her 7 + years to recover 'fully'.  And remember that recovering 'fully' is a very subjective term. 

For years, people have talked about the 'therapy plateau'.   Research within the past 15 years clearly debunks this once popular idea.

If you or a loved one are worried about 'your progress' and feel like you have hit the plateau.  Don't give up!  Find some encouragement.