Carol’s husband, Tom, had global aphasia, so he was stuck in pattern of a few phrases he could say. Carol felt intensive therapy was good for both of them, as it gave them hope and a way forward.
Why did you choose to get intensive aphasia therapy?
I didn’t know there was such a thing. I thought you went to therapy after they came to your house and then you were an outpatient and then when you were finished with that you were done. A very wise, very concerned speech therapist told me “he could benefit from intensive speech therapy” and in my mind, that just meant “do it a little harder” . That I needed to be more intense. As she made me more aware of what’s available, I decided to keep my promise to Tom to do everything in my power to help him return to normal. I would research this and see if this was something we could do.
Is it expensive? Yeah, but so is everything that matters. If you want a yacht, you buy a yacht. If you want a rowboat, you rent a rowboat. So I’ve always felt in my heart that that was secondary. What is most important is me fulfilling my promise to do all that I could do to see if maybe we could unlock a door that aphasia and apraxia has brought forward.
What problems were you having before you came to the intensive aphasia program?
I would say mainly, completely conversation because he was very limited to a few phrases that he decided answered everything. He would say “I don’t know” or he would say “it’s better than that” or a flat-out ‘no’ and no matter what the question, what the circumstance, he was just going round and round and I thought “if we can break that pattern. If we can make him believe that he can break that pattern then all roads are open”. He was stuck and I just wanted us to move forward.
How has the program or the staff helped you with these problems?
Immensely. I mean, the program has trained me to be so much more optimistic than I was. In the beginning, you almost feel like you’ve been issued a death sentence. This is it, there is no life beyond aphasia, no life beyond stroke. I have learned that that’s simply not true. It’s not true. I think he was able to do such much of a physical endurance sprint here of five hours a day. In the very beginning, no no but you know when it’s time and it was time for Tom.
I have learned that don’t give up, don’t get impatient, don’t judge, don’t feel that somehow as a caregiver that you’re doing it wrong. Don’t let him think that he’s done it wrong. Just be very patient of their frustration, understand it. Because truly whether you’ve had a stroke you haven’t. You just really want someone that you care about to understand where you are, what you’re thinking, what you’re feeling and especially if you’re unable to verbalize it.
Would you recommend it to other people?
Oh, absolutely. I was skeptical, I was so skeptical. It’s just a lot of travel in our case, a lot of money, a lot of disruption. I became the doer of all things when this stroke happened, so you still have bills and responsibilities and all sorts of things. My mother is also in the hospital, so it was a very difficult decision to make. Would I recommend it to anybody, because what it did for me more than anything is to renew my determination to do this for him. That he can, so if he can, then I can and we will just take it a day at a time, a week at a time,