8-17-2021 From clarity to confusion in just 24 hours

(Tricia)

After Linda first experienced the drop in sugar levels and went into hypoglycemic coma in June, our immediate concern was whether or not she would awaken. Once she awakened, our next concern was whether or not she would be able to communicate with us. Once she began communicating, our concern was when she could eat on her own again and when she would relearn to walk. But during this entire experience, I imagined that her recovery, to the extent that she recovered, would follow a trajectory of slow but forward progress. I imagined that it would be like a structure that had been destroyed being rebuilt one small part at a time.

But the reality has been far different. Instead, of a structure being gradually rebuilt, it’s like watching part of the structure be rebuilt one day, only to crumble the next. Or seeing lights that go on one day but that go completely dark the next. The last couple of days have made it all too clear that recovery from any kind of brain injury is not like recovery from any other ailment.

When I went to visit Linda Monday evening, she was sitting up in bed and had been able to sit herself upright and bring her feet to the floor on her own. She remembered where she was, and we chatted about the current news. We even discussed her care at NHC—she asked about the financial aspects of her care and I let her know where all of that stood. In that moment, she understood it all. When the nurses came in to help her get from the chair to the bed, she was able to hold most of her own weight—they only needed to offer slight assistance. I was shocked that she had gained that much strength. When I left that night, she seemed in good spirits and indicated that she understood that recovery was going to be tough but it was doable. It was a really good night.

Last night, Tuesday, I arrived at her room about 45 minutes later than I intended, finding her on the floor. Moments before I arrived, she had tried to get out of bed on her own but did not have the strength. She fell, hitting her head and hurting her right shoulder. When I asked her why she tried to get up when she didn’t have the strength to walk, she said, “You weren’t coming! What was I supposed to do, just lie there in bed?” Because of the knot on her head, the nurses will have her on “neurological watch” for the next few days, and they’ve lowered her bed to its lowest setting to ensure she doesn’t fall so far again.

The rest of the night she was confused about where she was and why she was there. She was confused about the time, thinking that it was lunch time when it was actually after dinner. She had no recollection of our great visit the previous night. She asked again what she was supposed to do all day if she couldn't walk?  I truly didn’t know how to answer her, except to say that she had to work with her therapists, who were trying to help her regain her strength. Whereas the day before she had remembered working with her physical therapists, last night she said that no therapists were seeing her and that she was doing nothing all day.

Not being able to get up and move around as she wants is really wearing on her. Without memory or recall, she cannot focus enough to read a book—or even to choose something she wants to read or have read to her. Without hand-eye coordination, she cannot write, use a laptop or tablet, or manage to cue up or navigate an audio book. That means that any time the therapists aren’t working with her or that we aren’t there, she truly is just sitting or laying there staring at whatever channel the last person left the television on. 

I know that being in a strange place with people she doesn’t know is making her more and more depressed. But the care she currently requires is still far beyond what we can provide at home. My only thought is to start researching other facilities, to see if other places might be able to provide her with more therapy and interpersonal interaction during the hours when we are unable to be there.

Every day, it obviously gets harder for her to face her current situation, and it becomes harder for us to see her struggle.