Aphasia Threads: Bill, Sue, and Annemarie

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 Bill, a person with aphasia, who had a stroke in 2017. Then, we’ll hear from Sue, who is a caregiver for her husband who has aphasia following a stroke. Finally, we’ll hear from Annemarie, who runs retreats for people with aphasia and their families.

Person with Aphasia

Sept. 27, 2017, I got up to get a cup of coffee. I went to say something to my wife but didn’t make any sense. As I went to get dressed, she called her sister who was a nurse. Next thing I remember, some guy was in my bedroom. I told him to get out so I can put my pants on. I woke up three days later in the hospital.

Aphasia Changes Your Life

I can’t say the right word when I know it. Go slower when you want to say something. Put more pressure on your partner. You become more dependent on somebody else than you use to be. Sometimes I can’t do something I want to because of the stroke.

But There Are Things That Help

Having a very good speech therapist. My tablet lets me spell words right. Use anything you can find that helps you.

And Things You Learn Along the Way

It’s not your fault. Take your time. Put your hands up to stop a person who is speaking too fast. Get them to slow down. Do whatever they tell you that will help you get around better.

What Caregivers and Professionals Can Learn From Me

We are not dumb! We know everything we want to say but we can’t get it out right. The words from my brain to my mouth took a detour. We just have to talk slower. Don’t stare at us. We have aphasia because we had a stroke.

Caregiver

My husband suffered a stroke two years ago and now lives with aphasia.

Aphasia Changes Your Life

I miss talking to him. He was a teacher. He taught horticulture to inmates at a state prison.

But There Are Things That Help

He was a huge reader. Now he builds models of boats and recently a trolly. His models are incredible. [Editor’s note: The images are boats that her husband built.]

And Things You Learn Along the Way

Just love them and be patient. Encourage them, and when they use the wrong word, give them the correct word and ask them to repeat it.

What People with Aphasia and Professionals Can Learn From Me

It’s hard to be an aphasia caregiver. My heart aches for my very smart husband who can no longer share his knowledge with the people around him. Aphasia is so difficult. It steals a person’s ability to communicate. A great deal of patience is needed to be a caregiver.

Professional

Annemarie runs retreats for people with aphasia and their families.

My father had a stroke in 2005 and one of his challenges was aphasia. There were limited resources available in our area. We had our first Andre R. Hemond Aphasia Retreat Weekend in 2012.

What I’ve Noticed Along the Way

I am not in the clinical field and do not treat folks with aphasia. I provide a quality of life weekend for folks living with aphasia and their caring partner(s).

There Are Things That Help

Being with folks who “get it” and do not judge is very important. Encouraging all forms of communication is key – and to keep the person involved in all aspects of communicating.

And I Encourage New Professionals to Learn About Aphasia

We partner with the University of Maine, Orono and the entire class of 2nd-year graduate students in speech therapy volunteer at the retreat. The retreat is written into their curriculum. The retreat is life-changing for the students and one of the most common comments is that they realize how important it is to get to know the whole person – not just for the hour or so of therapy. There is another whole side to the “story.” I would encourage a student to listen to what the person has to say and to put the “clinical” aspect aside while they get to know the person.

What People with Aphasia and Caregivers Can Learn From Me

The aphasia retreat weekend is my favorite weekend of the year. I cherish my time with these folks. They make my heart sing, and I love them dearly. I would welcome the opportunity to share how we started the Aphasia Center of Maine and what we do at the retreats. We are also the Adaptive Outdoor Education Center and many of our folks living with aphasia participate in our adaptive programs.

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