John, Darryl, Donna

Aphasia Threads: John, Darryl, and Donna

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 John, a person with primary progressive aphasia. Then, we’ll hear from Darryl, who is a caregiver for his mother following a stroke. Finally, we’ll hear from Donna, an SLP at Baylor University in Waco, Texas.

Aphasia Threads

Person with Aphasia

I guess it started a couple of years ago with forgetting certain tools for jobs and materials. I just thought it was stress and impatience to get these jobs done. Being self-employed all my life, I mostly had taken for granted the ‘inbuilt’ calendar and ‘memo’ facility we are all born with until these periods and episodes of ‘forgetting’ important stuff got the better of me. I reached a point where I REALLY shouted at myself for not being able to sort myself out and just get on with daily life without reference to lists and other forms of checklists.

John

Aphasia Changes Your Life

Throughout the time of ‘interrogation’ of my brain and how it was developing/changing, I started using methods of lists to aid with my ‘memory voids.’ My wife also helped me to go through methods of ‘remembering’ things, including leaving little yellow sticky notes everywhere and lists, and then more lists…

Then I began to tick things off these lists that I hadn’t done or forgot to tick things off that I HAD done. This led to the list method being dropped. I guess our relationship is now in the ‘slightly out of balance’ stage. By this I mean that whilst my life is becoming easier due to my mind slowly emptying itself of things, my wife’s life is being overburdened trying to do the things I forget on top of her own life’s chores.

But There Are Things That Help

iPhone… iPhone… iPhone… My phone keeps me updated on lots of the daily ‘chores’ I used to just do without even pondering too greatly over. Namely, when to take my pills (Memantine), when to take my other pills for my spine issues, when to call someone, when to go see someone, when doctors, surgeons or specialists need to talk with me.

The phone also holds something that is most wonderful––my family! I know who they are still at the moment, but am beginning to misplace episodes where we have spent time together. Important times, but I can recall these moments at the click of my finger, any time of the day or night. (I sleep less now than what I used to.) So this little sliver of electronics and glass is actually a living part of me. When I have gone to be with The Lord, this phone will revert back to being just that, a phone. But for now, while it is in my pocket, it is ME!

And Things You Learn Along the Way

Plan ahead. You already know the road you have been diverted to, sort of, even if you don’t quite know the method of transport or which seat is yours. All you DO know is it’s NOT the one with the steering wheel in front of you, and that’s for certain. So, you have a little time to still help those around you, maybe. I am one of those lucky ones that apparently do have a little time, so I am looking to support my wife, my children, and step-children in educating them on what is likely to be asked of them sometime in the not too distant future.

Power of attorney is one very important task, and due to the huge complications involved, my advice would be to get it sorted straight away before… well, you know.

Then, when you are happy that you have done all you can do to prepare your loved ones for when you are no longer who they know you to be today, LIVE YOUR LIFE! Do something you always wanted to do, you have to cram into a few months/years what others have decades for… Just do it!

What Caregivers and Professionals Can Learn From Me

They need to know two things. First, they need to know that they are appreciated. Second, they need to know that they are forgiven.

It must be the hardest thing in the world to tell someone that they are going to ‘lose’ themselves to a disease and there is nothing that can be done to stop it from happening. Whether it’s telling a patient they have cancer, arthritis, or dementia… these people are GIANTS in having the courage to convey what they have discovered about you and in such a caring and heartfelt way.

They need also to know that whatever they feel is the right way forward for their patients, and they truly do care about this part, we appreciate them for simply being there and trying. When we are gone from our thoughts, they have not saved us in their minds, yet still, our bodies demand care. This is the time when we say ‘you are forgiven.’ Forgiven for not being able to achieve the impossible, but hugely thanked for trying!

Aphasia Threads

Caregiver

Aphasia suddenly entered my life five years ago after my wife had a massive stroke at age 45. She also has no feeling on the entire right side of her body, not much use of her right arm or hand, and wears a brace to walk.

darryl

Aphasia Changes Your Life

We struggle daily with the effects of aphasia. There is very little meaningful conversation in our lives. Just explaining a simple task can lead to incredible frustration for both of us. She can’t read very much anymore. Small, one-syllable words are getting easier but by the time she sounds out a multiple syllable word, she forgets the words prior. I can’t share my problems with her as she doesn’t usually understand what I’m saying or gets it wrong, which can lead to more problems. She can’t voice what she is thinking to most people, so she puts her thoughts into actions instead. One of those actions comes when she’s disappointed. She ignores people. Two of those people are her own adult children who have made very little effort to try and understand aphasia and brain damage and haven’t spent enough time around her in the past five years to even realize that she has both or witness the extent of her disability.

But There Are Things That Help

The single most important tool she has is her iPad. It is the only way anyone can communicate with her at all. She has learned to “Talk to text” and as long as the reply is short, she can do quite well. Prior to that, it was always a wonder and worry that she was okay when nobody was around. She spends several hours a day on it, playing games and looking at Facebook and shopping.

And Things You Learn Along the Way

Patience. Lots and lots of patience. Don’t talk for them. Don’t try to finish their sentences. Don’t correct them. Nouns and verbs are going to be mixed up. I get called “Mom” many times a day. If you’re trying to figure out what they want, let them try and draw a picture if all else fails. Often up is down, left is right, tall is long, yes is no, no is yes, a knife is a spoon, a chair is a bed, shut the door means turn off the light… it’s like learning to speak a new language.

darryl

What People with Aphasia and Professionals Can Learn From Me

Besides all of the above… we are lonely. Our friends have slowly disappeared because it can be so stressful having a conversation with her. Especially if I’m not there to translate. It can be like a game of charades that lasts far too long.

Aphasia Threads

Professional

Donna works at Baylor University Neuro Rehab Clinic in Waco, Texas.

I became interested in working with people with aphasia as a graduate clinician at Baylor University. I was intrigued by my adult clients and wanted to help them communicate better.

What I’ve Noticed Along the Way

It is an absolute joy working with people with aphasia and their families. I love being involved in helping them communicate again, as well as the appreciation they show. My biggest frustration is not being able to completely restore their communication ability.

There Are Things That Help

My favorite therapy tool is TherAppy apps by Tactus Therapy. I use Language 4 in 1 daily, but they have many others that I enjoy as well.

And I Encourage New Professionals to Learn About Aphasia

I am a clinical supervisor at Baylor University and work with graduate clinicians in our Neuro Rehab Clinic. One of the most important things is to treat each client with respect by listening intently and being patient. Always be proactive in helping find the best avenue for communication.

What People with Aphasia and Caregivers Can Learn From Me

Being an SLP is a way to serve people and help them communicate more effectively. People with aphasia still have a voice, and as an SLP, I want to assist them with finding their new way of communicating.

Aphasia Threads

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Comments

One Comment

  • Richard Rosenblum
    June 19, 2019 at 10:21 am

    As a caregiver for my wife who is 70 years old, and had a stroke three years ago that left her with no Speech, it was great to hear from someone who in in a similar position to me.
    I know that aphasia is different for everyone, but I recognized many of the same problems that I have in this week’s post.
    There are no support groups in my area, and it is hard for anyone who is not in our situation to understand what it’s like.
    Now that I know that “Threads” exists, I will be a regular reader.

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