Bob is speaking better these days, and has come a long way since his early diagnosis of "severe expressive and receptive aphasia with apraxia and dysphagia". But he still has a long way to go. Some days, though he is speaking more clearly, much of what he says seems just nonsense to me. One sort of gets used to this. Sort of.
The other night, he was talking a blue streak, I mean, really going on and on, sounding quite urgent and, I thought, he's trying to tell me something, something important. And some of what he was saying was quite strange, weirdly haunting... and I do wonder what goes on in that poor damaged brain... So like an old school secretary, I got out my notepad and took dictation, thinking if I wrote it all down maybe, just maybe, I could make some sense of it later. Here it is:
Bob: Five days. A unit. Legs. (touches his paralyzed arm)
Me: That's your arm.
Bob: A unit and... A unit and arm and you and arm and you... (points to me)
Me: And me?
Bob: Legs. (touches his arm again)
Me: That's an arm.
Bob: Yeah. Arm. A sideboard.
Me: Sideboard?
Bob: Yeah. A unit. My arm and a room. A room.
Me: What room?
Bob: A room. Maryann. And a room and a room and a room...
Me: I don't understand. What about Aunt Mary? What room?
Bob: A room. A room and a room and all the people.
Me: What people?
Bob: A room full of people. A room of people. And Maryann and Maryann. Five days.
Me: Five days?
Bob: Five days and a room and... uh.. all the people. All the people. People. All the people are way back, OK?
Me: What people are way back? I don't understand.
Bob: (makes a gesture toward my office) See? All the way back. People. Sideboards. And a room and a room and all the people. All the people. People. All the way back and all the way back and all the way back, people and... (he points to me)
Me: Me?
Bob: Yeah. Hey.
Me: What about me?
Bob: And and and people and (touches my shoulder) you. OK? Sideboard.
Me: Sideboard?
Bob: (softly, sadly) Sideboard.
Me: What does that mean? Sideboard?
Bob: (softly again) Sideboard.
Me: I don't understand.
Bob: OK.
Me: What are you trying to say?
Bob does not reply.
Me: Tell me again... Bob?
No reply.
Me: I don't understand. What sideboard?
Bob: (puts his hand on my head) Diane?
Me: Yes?
Bob: And people and Diane. Diane. A room, OK? A room and Diane. And people and you. And a room and people all over.
Me: Where is this room? Who are these people? Are you talking about my office?
Bob: Yeah, a room and people all over. I care. And I love... over and all the people and units and all the people, right side, right side, right side and right side all the people and a door and... (voice trails off)
Me: And?
Bob: Well.... Legs. (touches his paralyzed arm)
Me: That's an arm.
Bob: Yeah. People. An arm and people are... people are sideways. Sideways. Sideways. Sideways.
Me: Sideways? Huh?
No reply.
Me: Bob? You OK?
Bob: I'm thinking.
Me: OK.
Bob: I am a people of business. Of business.
Me: Say again?
Bob: OK. Diane. And a room and a... a... a... and... And Lisa.
Me: Lisa? (note: Lisa is Bob's sister, she is deceased)
Bob: Yeah.... Diane?
Me: Yeah?
Bob: Diane?
Me: Yes?
Bob: And a unit and Oh! Um, a board and a room and... A room and hey, hey! A room all the way back, OK?
Me: I don't understand.
Bob: And Lisa. Diane? Hey! See you around! Bye bye!
Me: Huh? Where you going?
Bob: Going.
Me: Bob?
Bob: A room. A door. A room. Lisa. Another day. Another day. See you, bye bye!
Me: OK. Bye bye.
Bob: Well, bye bye! (taps my hand) Bye! A tear. A room. But away. Way back. OK?
5 comments:
I cried reading this. I face this so many times with my husband. And they were once so capable, articulate people! May God give you the strength to hold on... -- And, this too shall pass!
-Hasna
Mike and I have so many conversations like this. I can usually figure out when it's somewhere he wants to go or something he wants to do, but with things like memories or feelings or when he's worried - I'm at a complete loss. And I feel so guilty because he tries so damn hard to tell me what's going on in his head and I just don't get it.
It's so hard, I know, Diane. But it's wonderful that you wrote it all down. Even if in the end it doesn't make sense - you'll always have it and know that he's trying to communicate the only way he knows how.
I'm glad that Billie tries, now and then, but for the most part she grunts and laughs and says "ah hell" or "ah shit" and waves me away.
Try to keep strong, it is hard on our loved ones but I think it's harder on us, the caregivers, trying to help them rebuild what we all once had.
Luv ya
Trudy
Could Bob have had a dream (waking or sleeping) about his time in the hospital when the stroke occurred? Was Maryanne one of the nurses? Did Bob "see sister Lisa" because he went through a door then decided to come back to Diane?
It's getting close to when all that went down, yes? Maybe this sounds too far off. Or maybe not.
Frustrating yet fascinating. Hang in there. It will come to you.
Other than the bye bye, I was getting the idea he was describing his physical therapy room where he does the rehab work. The frustration level must be extremely high for both of you when he tries so hard to express himself.
Hugs, Dan
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