3-24-2023 "Never Roger, always Ed!"

Linda's brain injury has brought with it a host of maddening symptoms, but one of the most prevalent is that it has made her not just unable to remember people's correct names, but at times seemingly unwilling to. This has been especially true for Ed's name. 

For some reason, her brain is convinced that there are actually two males living in this house--one named Roger and one named Ed. When we ask her what each one looks like, she points to Ed and says, "They both look like him!"  And, of course, when we ask the obvious follow-up question, "Then why do you think they're two people?" she will respond with some version of "Their hair is different" or "They wear different clothes."

We don't know where this comes from. We don't think she's connecting Ed to her neighbor in Mountain View or our cousin in Indianapolis (hello to both of you!).  But the mix-up has been there since she first started talking after coming out of the coma. Ed has even had this exchange with her many times:

     "Linda, my name is Ed. Why do you keep calling me Roger?"

     "Because you look like a Roger! Your name should be Roger."

     "Well, my name is Ed."

     "Why?"

    "Because that's what my parents named me."

    "Well, your parents were wrong!"

Sigh. :-)  So, over the last few months, we created the mantra, "Never Roger, always Ed!"  Every time Ed sees Linda, he leans in close and asks, "Linda, who am I?" Sometimes she will go right to "Roger," and we say "Never Roger, always....?" Many times, she'll continue to say "Roger" or other names, and we'll have to remind her once again. Sometimes she'll say "Ed" as her first answer, and we all cheer! We also have begun to take "Fred" as an acceptable alternative, since it contains the right letters and at least rhymes. And then there are times when she gets this smile on her face--when this happens, we know she's in on the game. She'll say, "Roger! Mike! Stan! Phil!" The rest of us will say, "Never Roger, always....?" If she wants to continue the game, she'll continue to throw out a roster of more names before finally saying "Ed!"

Her difficulty with names, of course, doesn't just occur with Ed. She never gets Marilyn's name wrong, but she will often call me "Marilyn." She never remembers the caregivers' names. The cats often are "Onesies," "Twosies," and "Threesies" because she can't remember their names no matter how many times we remind her (although sometimes Bling is also "Blackie" and Dave is "Bobby"). And then there are times when we'll tell her the right name, and she'll say with great frustration, "That's what I said!" That raises the possibility that, at least at times, she's thinking the right name but her brain is just saying the wrong one. If that's happening, I can understand why it would be incredibly frustrating for her when we tell her she's gotten it wrong.  

As she said months ago about her brain: "It's' a free-for-all up there!"

In addition to the Ed/Roger confusion, Linda also is consistently adamant that she owns a motorcycle--and we also have no idea where that comes from. Our brother Bobby owned a yellow dirt bike decades ago, but that bike is long gone. She even knows the type of motorcycle she supposedly has: a black Honda 250 dirt bike. She is so specific about it I'm starting to wonder whether she might actually have a motorcycle squirreled away somewhere we don't know about!

Overall, though, Linda is doing better. Her color has come back, she has put back on the weight she lost while she was in the hospital, and even her strength seems to be improving. I'm not sure she'll ever get back on her feet again in any capacity, because her right knee and right hip still cause her discomfort. But I have once again started running her through her physical therapy exercises, in bed or in the wheelchair, at times when she seems receptive to it. 

And we continue to get her up in the wheelchair for a few hours each evening, so we can get her out of the bedroom to have dinner and watch television with us in the front room. Now that the XFL has brought football back to St. Louis, Ed gets twice the enjoyment--he gets to watch a local football team once again, which he loves, AND he gets to torture Linda by making her watch football! He adds to the experience by yelling "Go Battlehawks! Ka-kaw!" at her while flapping his arms for effect. She pretends to be irritated, but we can tell she secretly enjoys it, at least a little bit. :-)

Last Sunday, she even asked to get out of bed in the morning after breakfast. She was up for five hours before we put her back into bed around 3:00.  And then she asked to get back up again for a couple of hours that evening. That was an unusually active day for her. 

Even the hospice nurse and social worker have noted how much more alert she seems. When the social worker, Lindsey, visited Linda yesterday, she spoke to Linda for a full 45 minutes, which was a record. If all things stay the same or improve, it's possible that we might find ourselves back where we were last September, when Linda no longer qualified for hospice. That said, I'm trying not to look too far ahead--anything could happen at any time. But if it comes to that, we still have to be prepared to shift our mindset once again. Shift to what this time? I'm not sure. 

I obviously have not been updating this blog as often as before, primarily because things have been settling into a routine very similar to the routine we had last summer. But we will try to add updates here and there! We are in a different mode now--last year, the focus was still on trying to help her regain her mobility, to whatever extent possible. But now, it's more about just following her lead and seeing what happens.