Aphasia caregivers, Isolation and community

Caregivers at the Aphasia Center (including Brian) talk about comparing their progress to others', social isolation, and celebrating each step in the recovery process. Different ages, different states, different walks of life, yet they share the same fears and outlooks.

Brian: Well hello. I just wanted to take a few minutes to sit down with these really amazing women who are three of our current caregivers here at The Aphasia Center. I thought maybe could you go around and introduce yourselves, and just say your name and maybe where you’re from?

Gretta: I’m Gretta Miller from Rockwall, Texas.

Debbie: I’m Debbie Kopack from Templeton, California – central coast of California.

Jamie: I’m Jamie Alesch from Remsen, Iowa.

Brian: And I’m Brian, I live here in St. Pete. You’ve probably talked to me on the phone. If you haven’t talked to me on the phone, you should call me and talk to me on the phone.

Brian: So there were just a few questions that I thought maybe we could talk about today and get some different perspectives and bounce some ideas off, but the first question I had was: you come from various corners, actually kind of extreme corners almost to the perimeter of the states almost if I think about it, have you ever felt isolated like you were the only family that you knew of that had aphasia?

Jamie: In the beginning after Kory first had his stroke when we were at the rehab hospital there were others that had aphasia and he was in aphasia groups. But when we went home that was a totally different story. Our friends and family have been phenomenal stepping up and trying to include him. I’m not sure Kory so much feels isolated, it’s probably a little more me; although, I can’t say that for sure because he can’t communicate that to me. At home it was a big adjustment for me to go back to the routine and try and find some normalcy back in life again. It seemed like everyone else’s lives just continued on and ours was kind of stuck with that lapse in communication between the two of us.

Brian: Yeah, I get that. What about you guys?

Debbie: I think, very much feel isolated and I think Tim does, too. The area that we live in, everybody’s stroke is so different and we don’t know anybody else other than at rehab that has aphasia that’s in our immediate group. I think a lot of people don’t even understand what aphasia is so even when they’re talking to you or dealing with you, they’re you know, “Well, does he understand? Does he remember? Does he…?” and you have to go through that whole explanation. He’s all there, you know, you got to treat him normal.

The Aphasia Center
6830 Central Ave, Ste. A.
St. Petersburg, FL, 33707

Tel/Fax: 727 823 2529 / [email protected]