Welcome to the Aphasia Threads Project, which weaves together three points-of-view: people with aphasia, caregivers, and the professionals who help each family navigate aphasia. Each week, we bring together three unrelated stories, one from each member of this triad, to learn from their experience. This week, we’ll hear from Kim, a person with aphasia after a traumatic brain injury. Then, we’ll hear from Mary, who is a caregiver for her husband after several strokes. Finally, we’ll hear from Cheryl, a speech therapist in Florida.
Person with Aphasia
I dropped a glass bottle of vinegar on the top of my head, causing a mTBI. That simple injury changed my entire life. That is when aphasia entered our lives.
Aphasia Changes Your Life
It shows sporadically via my written and spoken word-comprehension, etc. It has been the root cause of misunderstandings, hurt feeling, lost self-esteem, feelings of incompetence. The worst has been mourning my old life, then accepting my new life with complications.
But There Are Things That Help
I’ve used Pinterest and Facebook support groups apps. I recently found Migraine Buddy, which has been a lifesaver if you have migraines.
And Things You Learn Along the Way
Carry a paper calendar to help organize yourself. Take your medication. Ignore the mental illness references and tell them you have a brain injury. You will make speaking mistakes. Tell family members if you say something that doesn’t make sense to tell you. You may have made a speaking error.
Close your eyes if you get stuck on a phrase. It is like erasing the blackboard and starting over. A lot of movement can cause confusion. If possible close your eyes or look away. Try reading in 5-10 minute blocks only. Watch the morning local news; they repeat the same story every hour. That helped my short term memory.
Photo by LIANE on Unsplash
What Caregivers and Professionals Can Learn From Me
We are mourning a very personal loss, learning new ways of doing things such as talking, thinking, and driving. Frustration comes easily. We are trying to wrap our arms around all of the changes. We ask direct questions but feel we aren’t getting answers. If this is forever tell me. I will put more effort in learning the new me. I just lost my life as I know it, my income, independence. We are intelligent. Do not feel we can be your target of insulting remarks relating to our communication.
My husband had three strokes at the end of 2016. The third left him with aphasia. I understood the difficulty finding words, but the other cognitive issues were a shock to me. The first time we sat with the in-home speech therapist, when I realized he did not recognize his letters, could not spell, tell time, or do simple math, it terrified me.
Aphasia Changes Your Life
Through continued hard work, my husband is working and functioning quite well. Much of the daily navigating, however, is left for me. Phone calls, scheduling appointments, financial organization, helping kids with college applications, paying bills, all fall to me. My husband often says the opposite of what he means, which can make for miscommunication, confusion, frustration. You need to be the conduit for communication with your loved one and your children, family, friends, and community.
But There Are Things That Help
Continued, affordable therapy through clinics at York Wellness and Rehabilitation Institute at Nazareth College. They are amazing and also run an aphasia support group. Livescribe recording pen for note taking during meetings, collaboration at work (often used for students with ADD). Early on, it’s helpful to use any free app that teaches kids to tell time or learn their addition and multiplication tables. They don’t have to be specific aphasia apps.
And Things You Learn Along the Way
Read as much as you can about aphasia and stroke – it gives you information and reminds you that you are not the only one experiencing this. Try to educate your extended family and friends – they will see that your loved one is physically getting better but will not realize how exhausting the mental practice can be. It’s ok to grieve the old way of life, but do not lose sight of the possibilities to regain some of it back.
Practice, review with your loved one as much as you can. Ask questions, keep notes, do research. Laugh. Get your kids involved with word games around the table. Even though you see the most of the progress in the beginning, we continue to see progress two years later. We did not know that patients with brain injuries are more at risk of having a partial seizure. This seizure can temporarily show signs of a setback in aphasia progress. Keep your loved one’s spirits up! Attitude is the most important thing. Hope!
What People with Aphasia and Professionals Can Learn From Me
Caregivers need to know more about the cognitive deficits that go along with aphasia. It is not just word finding. Explain what is happening in the brain. Give the caregiver as much information as you can, including books, websites, apps, clinics, local resources, support groups, information on insurance and the limitations regarding therapy. I wanted more information and still do. Know that because of the patient’s aphasia, the caregiver’s life is turned upside down. They have to take on more responsibility at home with family, the emotional health of our kids, and financially. (I had to go back to work as well as juggling therapy and doctors appointments.)
Photo by Annie Gray on Unsplash
Our aphasia story brings me to our dining room table. The simple, sturdy table we bought when we were first married 24 years ago. We were young, but we knew we wanted something nice enough for holidays but functional enough for daily meals, kids homework, family game night. And here we sat January 2017, my husband, his at-home speech therapist and myself.
It’s three months after Terry’s first stroke and just three weeks after his third. This third stroke left him with a 6 inch scar down the side of his neck after surgery, numbness in his right hand and aphasia. It’s at this table I realize for the first time that aphasia is more than just difficulty finding the right words. My smart, witty husband not only is having trouble finding words, but he does not know how to spell. He does not recognize his letters. He cannot tell time, cannot do simple math. It’s terrifying, feels like drowning to me.
I know we have to fight this, work hard together to repair this. We sit at this table a few times a week with the speech therapist. We sit at this table doing homework and tons of extra worksheets I find on the internet and from books checked out from the library. On the table sits a letter line for review, addition and multiplication flash cards. We sit at the table learning, practicing, reviewing. The same table I sat at with my now teenagers so many years ago, doing the same thing. “2+2=?” “6×4=?” “What is the opposite of cold?” “Name as many animals as you can in 3 minutes.”
The table is sprinkled with etchings from the kids homework years ago. When they were frustrated, determined. It is at this table I now see Terry’s continued determination. I see his frustration, his pride, his fight. It is amazing to see how the brain finds ways to correct itself, find pathways around that damaged spot in his brain. How it continues to grow stronger, sharper.
Terry sits at the table doing homework from outpatient therapy. Once insurance runs out we find a clinic at the local college. He does homework from those sessions. He sits at the table at his laptop from work. We work at communication during meals and playing games with the kids. Two years later, there is no need for the letter line. The flash cards tucked away. Words come much easier for him. Those who do not know about the strokes would never notice the aphasia.
But, the day to day does not go without frustrations. When communication breaks down at home, when Terry says the opposite or takes extra time to find the right answers, I have to remind myself where we were not too long ago. I have to remember the table. I have to remember Terry’s overwhelming determination to work at things that come so easily to everyone and to him before the strokes. I have to remember all the time spent at the table and all of the hard work put into getting where we are today.
Cheryl is a speech therapist in Florida.
My interest started with the first person I treated who had aphasia. I was hooked.
What I’ve Noticed Along the Way
The biggest frustration is hearing from people with aphasia and family members who are told they will not make improvements past six months or a year. The biggest joy is helping a person with aphasia reach a goal.
There Are Things That Help
Communication partner training. Giving both parties the tools to exchange infomation is huge.
And I Encourage New Professionals to Learn About Aphasia
Working with adults is more of a collaboration than anything else. Find out what your clients need/want to communicate and work like a dog to make it happen.
What People with Aphasia and Caregivers Can Learn From Me
We are not miracle workers. If your person with aphasia was cranky and didn’t talk much before getting aphasia, that isn’t likely to change with speech therapy. I love my job.
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