11-5-2022 Long time, no Linda :-)

(Tricia)

I know it has been a long time since the last post--things have gotten especially tiring as Linda received all of her therapy appointments. Plus, she has had a couple of very up-and-down weeks.

For the past three weeks, Linda has been receiving two sessions of physical, occupational, and speech each week. However, she has been discharged from both OT and speech, so she now will only have PT.  Insurance has approved only three more sessions of that, pending her doctor submitting new orders (and the insurance company, of course, agreeing to them).

In the meantime, in the "good news/bad news" category, about a week and a half ago, Linda was able to take a few assisted steps with her walker, which took her caregiver and me by surprise.  We thought we were just assisting her to stand, and she just started lifting one leg, then the other! However, Linda was still quite unsteady on her feet. She thought that she could make it the five steps or so from the chair to the bed--and so, foolishly, did we. But her legs gave out about a step and a half away, and we were too far away from the chair to get her back there.  So, when her legs went out, we were suddenly supporting her full weight. Luckily, she did not hit the floor, and we were able to get her into bed! We learned a valuable lesson, to always keep the wheelchair right behind her at all times. 

But unluckily, when her knees buckled, her right knee bent past the point of comfort, and it has been quite swollen ever since then. But the home health nurse has assured us that it was likely nothing serious. Over the last two days, it has looked a lot better and she has complained of a lot less pain. Even with her injured knee, she had a good PT session on Friday, where she was able to stand up with assistance three times for about a minute each time, and do her upper body exercises with the therapist. 

Unfortunately, Linda's breathing has also worsened over the last week and a half. She used to be able to maintain her oxygen levels without supplemental oxygen when she was awake and sitting up. But we had a scare two Mondays ago--when we checked her oxygen saturation level first thing that morning, we found it had dropped into the 70s.  It turned out there was an issue with the oxygen concentrator, so she wasn't getting the O2 she needed as she slept. But even after we got the issue corrected and her O2 levels went back in the 90s, we found that she could no longer hold her own for even a short time off the supplemental oxygen.  We're not sure what happened, but it coincided with that single incident.

In that same time frame, she went from being fairly clear to making little sense, almost overnight. She had the best session yet with the speech therapist two weeks ago, and she was getting Ed's name right almost every time; she consistently knew where she was, and she had stopped asking where our mother was.  But just a few days later, her mental clarity had slipped once again (she started asking for Mother, insisting Ed's name is "Mike" or "Roger," and not knowing that she is at our house in St. Louis).  It turns out she has yet another mild urinary tract infection, which can cause confusion in the elderly.  We just started treatment on that, and we hope that once the infection clears, her thinking will come back up to baseline. 

So, all of this is just more evidence of how fragile her condition is. Any small thing can set her back or throw her system out of balance.  But that's why we have her at home, rather than at a skilled nursing facility. Here, we can watch for and respond to trouble very quickly, whereas we have learned from experience that she would not get that level of attention in a skilled nursing facility. 

The last challenge I'm facing is that our head caregiver has stepped out of the caregiving rotation. What we thought was going to be a two-month arrangement has (thankfully) turned into something more long-term. The caregiving manager wants to take time to focus on her family and other obligations. For the moment, she has arranged for our other two caregivers to fill in for her, but that is only a short-term solution.  I will need to find other caregiving support, which might not be so easy. It was by sheer luck that I found this small group of private caregivers, when I called an end-of-life doula for advice. It will be hard to find others whom I trust as much, but I hope to find additional support soon.