The frustration of aphasia: "Everything just kind of caved in on us"

Gary’s husband, Joe, had severe anomic aphasia. Gary talks about how their world “caved in on us” after Joe’s stroke.

Joe is 72 years old. He had his stroke about three and a half years ago.

He was home in the middle of the night when the stroke hit. He was not able to get to the hospital to do the clot busting two hour treatment so they had to do a brain catheterization. They destroyed his optic nerve in his left eye during the surgery. And he’s now totally blind in the left eye.

He was out of rehab in a month. He was out of the wheelchair in about two months and the feeding tube was taken out after about three months. And then he progressed rapidly and he got home… except for the aphasia.

Reading, he loved to read. And what happened was he could do it but he couldn’t process the information as he was reading it. And that’s when I first noticed the problem. And of course the speech was always an issue. But prior to the stroke, reading was a big hobby and the use of technology was a big hobby.

Conversation. We have not been able to have a conversation in basically in three years. Every time we interact verbally, it’s my trying to help him communicate as opposed to a mutual exchange in a conversation. That’s been the biggest drawback.

For me, it’s been very hard to relinquish the control that I was exercising over the situation in the beginning because I had to do everything for the first 6-8 months. And when he was trying to communicate again it was very frustrating. And the frustration, we finally reached a point where we had to just stop. And I had to take a deep breath and walk away because we would both get frustrated trying to communicate. Basically everything just kind of caved in on us.

I wish that there had been more. I wish we had been able to hook up with an aphasia support group earlier in the game to deal with the emotional trauma. Because that was a hard part for both of us but especially me as a caregiver.

I wish I would have had an opportunity to interact with other people going through similar things in the beginning because I was grasping at straws. And with him, basically the frustrations would mount and mount and mount and then again I had to learn over time to step back. To relinquish control more and more as I could because I learned that actually, when I would step back and let him, he was much more capable than I gave him credit for. And I was trying to do everything and he actually progressed at a faster pace when i gave him less controls. And now we’re to the point where we can do anything we ever did, it just takes longer.

To people with aphasia: Don’t give up on yourself. Because there were times when Joe did, especially when he lost his eyesight.

The advice that I would give patients or clients is just to trust yourself. Don’t be afraid to try to talk. If you babble, who cares? Say it anyway.

And people care, people have a lot more compassion than I have ever given them credit for.