9-2-2021 We're in a "good-day-bad-day" cycle

(Tricia)

As Marilyn noted in the previous post, we really can never predict how well Linda will be when we arrive. Some days, she is clear and strong enough to stand up from her bed with minimal assistance. Other days, she is foggy and can’t get out of bed. At this moment, we don’t have a professional neurologist to help us understand these cycles, but it’s clear that her brain and body get tired easily. When she is well-rested and alert, she is clear and her memory is more stable. When she is tired, she makes far less sense and her memory slips.

I did go to the facility Monday morning to watch Linda’s physical therapy, which was again with Nora, in case I needed to step in to encourage her to continue. But Monday was one of her good days. Linda was clear and joked with Nora as she worked on walking, standing up from the wheelchair, and transferring from wheelchair to bed and back again. She even did her weighted exercises with Nora without complaint. All I had to do was walk behind her with the wheelchair when she walked around the therapy gym, and count reps when Nora had to step away to gather more equipment.

I made an appointment to attend her physical therapy again on Tuesday, but I received a call from Tyler, the other PT, at around 10:00 a.m. saying that he had already worked with Linda earlier that morning. It is rather difficult to pin these PTs down! She refused to do the weighted exercises (no surprise there), but she did very well, Tyler said, in doing her other tasks, such as walking and bed transfers. I would have preferred to be there so I could try to sweet-talk her into doing all of the exercises, but overall, it was still good news. The downside, though, was that given how difficult it is to set an exact time for Linda’s PT, I did not make another appointment for yesterday or today. 

As Marilyn also noted, yesterday physical therapy did not come in the morning, and Linda was mostly asleep by the time Marilyn left at lunch—it was unlikely that they could have worked with Linda in that state. It just shows that we have to accept that Linda’s recovery is not going to happen in a straight line. There are going to be good days and bad days.

Last night, though, was a combination. Linda was sleepy and in bed when we arrived, so she was unable to stand up at all as she had done the night before. But she was talkative and interactive. She still called Ed “Mike” though! When we corrected her, she exclaimed, “Well, he doesn’t LOOK like an ‘Ed’”! We were pleased and relieved that she remembered that Mother had passed away, and she even asked whether Mother had to go through an experience similar to what Linda was going through now. (We answered that Mother did not have the same experience, largely because she maintained her ability to get up and down so that Linda could take care of her at home.) My hope is that her memory of Mother will continue to get stronger, and that she will be able to hold onto it longer as her brain heals.

Linda also told us how much she “loved Nora,” because Nora was helping her recover so she could go home. That was a big change from last Friday! Then again, Nora's interaction with Linda on Monday was completely different than it was on Friday—Nora was patient and encouraging, and Linda did so well. I had absolutely no complaints. Later on Monday, as well as on Tuesday, I was able to help Linda transfer from her wheelchair to bed and back without the assistance of a nurse, because Linda was able to do most of the work on her own. So, perhaps Friday was just an off day for everyone.

Perhaps one of Linda’s most interesting observations of last night was a moment when she stopped and said, “You know, I’ve decided that I would rather have to go through this experience than not go through it.” We asked her what she meant, but she simply repeated that she would rather have this experience than not. We weren’t certain if she meant she “preferred it to the alternative,” so to speak, or if she truly meant she was getting something out of this whole thing, as unbelievably difficult as it has been. 

Her saying this has really stuck with me, and I’m trying to shift my perspective to see if I can view this experience in the same way, especially given the fact that Linda is still with us today. As difficult as these last few weeks have been—and as difficult as the coming months will continue to be—I  recognize that we are blessed that Linda is awake and speaking to us and that this has been a true learning experience for us all. My first hope, of course, is that Linda will emerge from this experience having regained as much of her strength, cognitive abilities, and independence as possible. My second hope is that, in time, we all will be able to look back on this difficult time with the knowledge that we all gained something positive—more resilience, greater capability, a stronger sense that things will be OK—in the process.