A Happy Caregiver – A Happier Life

Mom & Lori at Christmas 2006

Anyone who is a caregiver of a family member or friend knows that what affects your loved one also affects you. Some illnesses or disorders are easier to manage than others. For many, the patient is affected the same way and there is a proven treatment. But for those of us caring for a loved one who suffers from Aphasia, there is no one place to go to find the answers.

The first challenge we deal with is that Aphasia comes in many forms. There is Expressive, Receptive, Transcortical sensory and Nominal aphasia just to name a few. The next challenge is that even when two people suffer from the same type, it can manifest differently from patient to patient, leaving everyone feeling alone and at a loss for answers.

I was a caregiver to my Mother for eight years. She survived a massive stroke and along with severe right side weakness, she had Expressive aphasia. Mom would say “do do do” in sentences and think she was speaking words. In the beginning, we tried everything from speech therapy to acupuncture, with only minimal results. The frustration and aggravation mounted as we realized she wasn’t getting any better.

As mom’s caregiver there was only so much I could do. I followed all of the instructions from the speech therapist: doing daily workbooks, making mom use her words, living life as normally as possible. None of these things worked for Mom and her frustration grew by the day. Unable to meet her needs my despair began to grow as well.

I realized that I needed to find a way to manage my own frustration and set the tone for a more positive experience. Through my counselor and her program, Journal to the Self®, I began to use journal writing to manage my feelings. Gradually, I was able to express my frustration in a safe and healthy way. To my surprise, I also found innovative ways to interact with Mom and help lessen her daily aggravations. By changing my attitude the mood in our home lightened and mom settled into a much happier existence.

We realized early on that the aphasia had not affected mom’s ability to use profanity; however, as her frustrations lessened so did the potty mouth. She also never lost her ability to say I love you and she said this with much regularity. We discovered that she was able to sing songs from her era and it was something that she enjoyed. So, music became a huge part of her day. Communication in our house became formed in yes or no questions to help Mom answer easily. There was a time limit set on trying to figure out what mom was saying. After a few minutes, if we could not figure it out and had determined it was not health, food, thirst or potty, we would move on promising to revisit it if necessary. These simple changes made everyone’s life so much happier.

I wish my story ended by saying Mom woke up one day and was able to speak. Sadly, she never regained her speech, but I can honestly say that she lived a very happy and content life after her stroke until she passed in July of 2009.

My hope is that my story helps you as a caregiver understand that you must find a way to manage your self-care while caring for your loved one. A happy caregiver sets the tone for a happier life.

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Reader Comments

Lori,
What a well written expression of your trials and successes as a caregiver! As a Speech Pathologist and newly established Life Coach specializing in patient and caregiver life fulfillment, your story resignated with me. Thank you for sharing what worked with you and your mom!
sincerely,
Paige Ritchie

#1 
Written By Paige Ritchie on February 26th, 2011 @ 7:35 pm

Hi,
My mother also suffered a stroke and acquired aphasia. She had a stroke in October 1999 so it has been quite a while. I can completely relate to you and your situation. My mother has been virtually non-fluent since I was 10 years old and it was just part of daily life. I can honestly say she has been a true inspiration to me. My interest in Speech-language pathology sparked because of my mother's situation and now I am hooked! I am attending graduate school in the fall to become a speech-language pathologist to help people like my mother and like yours. I enjoyed reading your story and know there are others out that can relate to you and your situation. I applaud your patience and your positive attitude! Thanks for sharing!

#2 
Written By Anna Styers on March 1st, 2011 @ 5:14 am

Thank you for sharing, Lori! My mother had a stroke a couple months ago and now has Expressive Aphasia. (Right after the stroke, she also had Receptive Aphasia.) She is getting much better with words thanks to speech and physical therapy but there is still a lot of work to do.

This really helped me: "There was a time limit set on trying to figure out what mom was saying. After a few minutes, if we could not figure it out and had determined it was not health, food, thirst or potty, we would move on promising to revisit it if necessary."

My mother also gets very frustrated when the right words don't come out. I try not to interrupt, but I will try to use the same technique when I'm with her. I will share this post and your advice with my family.

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