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!

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!

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.

Tips for Communicating with a Person with Aphasia

When your loved one is finally home again, you may need help in communicating with them. I know you have probably heard this a thousand times, but Aphasia does not affect intellect. Your loved one is the same person. They are just challenged when trying to express themselves.

Here are a few tips that may help you communicate easier:

• Minimize distractions as much as possible. Don't try to talk over a blaring television. Don't try to have a conversation in a room full of people when hearing or concentrating may be a challenge.
• Encourage any and all types of communication. Whether the communication is speaking, gestures, pointing, grunting, etc., let the person communicate. Be ready to adapt to their needs at the moment.
• Be generous with your praise. Let the person know they are doing a good job and that you understand them. Avoid the urge to correct their speech.
• Include the Aphasic person in your conversation. If the person has expressive aphasia, they understand every word you speak. Do not ignore them - include them. Let them know you want to communicate.
• Allow the individual extra time to talk. An individual with Aphasia may need 2 to 3 times as long to communicate. Give them time. Let them finish.

These are simple techniques, but so easy to forget. Practicing these simple techniques can make a huge difference in the life of a person recovering from Aphasia.

Communication Tips for Caregivers of People with Aphasia

Many people ask me , "What can I do at home to help?". I am listing a few admittedly basic, but sometimes overlooked suggestions on how to communicate with your loved one.

Sometimes it is hard to remember that Aphasia does not affect a person's intellect. People suffering from Expressive Aphasia know what is going on around them. They realize that people are whispering in front of them or speaking loudly or using baby talk. They understand perfectly, they just cannot make the words come out of their mouths.

Here are a few tips:

1. Refer to the paragraph above and realize that Expressive Aphasia is a communication disorder and not a cognitive impairment. This should always dictate how you respond to your loved one.
2. Be a loving partner. You are not a therapist, so don't be their therapist. Be an encouragement. Be a supporter. Partner with them in the process.
3. At least once a day sit down and have a pleasant conversation with your loved one. Spend at least 15 minutes talking about whatever comes up. This is GREAT practice for a person with Aphasia. The more time you can converse back and forth - the better.

I have a lot more suggestions I will save for another day.

If you have any ideas or tips, please feel free to comment. The purpose of this blog is to foster interaction among readers and hopefully provide an amount of support for people with Aphasia and their caregivers.

If you need more Aphasia Therapy for Expressive Aphasia, go to my website www.communicationpartner.com. We produce aphasia therapy on DVDs that can be used independently at home or in conjunction with a speech therapist.