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 aaoutlooks.

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.

Brian: What about in Texas? Were there … you had mentioned to me that you had spoken to the people who hadn’t heard about this practice before here?

Gretta: Almost oh no one had heard of it.

Brian: Right, so was there a community in Texas that you were able to get ideas from, or…

Gretta: Not really, just from individual speech therapist but I’ve never been exposed at all to a caregiver group at all. Our situation is a little bit different
because we have a son-in-law who has aphasia following a stroke 11 years ago, and we have a dear friend whom has aphasia, following a stroke 18 years ago, so we’re we’re often with those people who cannot speak, which has given us a little more insight with Frank stroke. We have better insight into their life, and they in ours. But i would say that we do feel isolated socially, because there are not that many people who can cope with the difficulty in communication with someone who doesn’t speak freely.

Brian: Absolutely. So now that you’ve come here and you met people. Yes, we’re still in our going to therapy context, but what has it been like, have you found any benefits just being able to visit with each other, and get to hear each other stories. What have you found?

Jamie: I think for Corey and I personally, we’ve only been here a few days. And the fear of traveling this far leaving our family and friends behind, was huge for us. But the moment we walked in, in our first minutes here with Dr. Lori with you, and then having the opportunity to meet these other amazing families. And enjoying lunch together today, just kind of lifted my spirits and and rekindled that fire to continue to push and work hard and educate people about aphasia. And I think being here I already feel part of a family. I mean I’ve spent time with you this morning, and then these ladies asked me to lunch good day it was it was amazing.

Brian: Good, good, awesome.

Jamie: Good from my soul.

Brian: Do you have anything to add to that?

Debbie: I think the connection with, again with people who are going through something like this. I mean, ut’s like I wish we didn’t live so far now. It’d be fun to have a reunion or something.

Brian: Right. Well, now with the wonders of the internet and Facebook you can you know you can keep in touch with each other. But, so kind of shifting then the conversation from caregivers and camaraderie and things like that. One of the things that we are talking about in the office this month, is not comparing your journey or your loved ones journey to somebody else’s. To their process. It’s very easy to get distracted saying, “Oh well, their stroke was only six months ago and look what they can do and we were two years ago only that this”, you know. Has that come into play in your thought process at all, or into your loved ones thought process, or and how do you then deal with that?

Debbie: Absolutely in the beginning for me I did that. And I’ve learned that’s not a healthy thing to do. Tim, I don’t know that he, I don’t think he thinks about it. But what I’m finding is the positive energy that’s here, helps me, it helps him. It seems like everybody we’ve met here has just been so supportive and how can you not go forward.

Gretta: Here it’s fun to celebrate someone else’s. You know to hear Cory say hi or bye, or hear Tim talk about something, or say happy birthday and sing happy birthday. It’s just fun to celebrate with other people, and their progress. But I don’t think Frank or I either one have had felt like we had to compare to someone else’s writing.

Brian: I know for us that was hard for for Jason especially I think it’s because he’s always been a perfectionist. And even all throughout school with his best friends, it was a competition for grades, it was a competition for who would get their, you know their teaching placement first. Who would get, you know, this or that, and so um I mean, you guys met Jason now and his speeches progressing really well. But he doesn’t he doesn’t quite see that.And so people come in who have a totally different set of deficits, but all he will do is put his cookie cutter onto them, and feel like it doesn’t add up exactly exactly.

Jamie: I think Cory is very similar to Frank and Tim. I don’t necessarily believe that he compares himself. I can get hung up on the fact that, as Debbie said “strokes can be very different and affect people very differently”. And for a while I would find myself saying to my mom, who spent the most time with me at the hospital , “But they can talk”, you know, “but they can talk, if he could just talk”, you know. But over this last year, I think back to the beginning where it was more just the blank stare, and he couldn’t communicate at all. And I fast forward a year, and look at how he can communicate with me much better than he wants could. And that just gives me hope ,and I think here he so desperately was ready to come here, clear back in February. And I think he has that hope and he has that drive and that motivation, because he wants to continue yeah progress forward.

Brian: Absolutely. You know, so I think you know in moments where, if you find yourself comparing, it’s always good to look behind you. They say “Don’t focus, don’t focus behind you, but take a quick glance and see how far you’ve actually come, you know. And I think that’s probably super important.

Gretta: But we do celebrate every step, every reason to. Everybody, it’s like absolutely any little word driving down the street. He sees a sign and he can read it, or we were driving, and he’s way into cars. “Tesla, Bentley” it’s like …

Brian: OK, wow, that’s fantastic. Well, thank you for sitting down for a few minutes with me today.