8-24-2022 Settling into an odd routine...

(Tricia)

Sorry for the two-weeks-long silence! It has been a bit stressful trying to get used to this "new normal." Linda's C.diff is now fully controlled with the once-daily dose of 125 mg of vancomycin. We hate the fact that she now has to be on two antibiotics indefinitely, but if it's ongoing antibiotics or infection, we will obviously choose the antibiotics!

We did have a bit of a scare a week ago, where it seemed like the C.diff might be breaking through, but the doctor called in the order for a test through Quest--the first results came back "inconclusive." That meant the test was positive for an antigen that is present when C.diff bacteria are also present, but it came back negative for the C.diff toxins themselves. The second results came back more conclusively: No active C.diff detected.  Finally.

Her new primary care doctor also ordered an in-home blood panel, and when those results came back, the doctor called to say he was pleased to see that all of Linda's numbers looked good, with most of the numbers improving from when she had her last blood tests in the hospital three months ago. 

Since Linda has been on this regimen, her health has been holding steady. We have been trying to get her to move her arms and legs as much as possible in bed, as well as getting her up in the wheelchair when she agrees. But just as before, Linda is Linda!  She often doesn't want to exercise, and sometimes she will let us use the Hoyer lift to get her to the wheelchair and sometimes she won't. Most often, when she refuses, it's not because she doesn't want to get out of bed. It's because she wants to get out of bed on her own two feet or not at all. We have finally accepted that there's no reasoning with a brain injury! We can only try to work around it as best we can.

She is still asking where Mother is repeatedly, which is hard. But, again, she often will give hints that she knows that Mother is gone. She simply wants to do anything she can to make it not true. I've started handing her the paper we made to remind her of why Mother isn't here, where she is, and what brought her here, first thing in the morning. 

The good news is that an in-home physical therapist finally came to see her on Monday! She evaluated Linda, and says that she thinks with time, Linda might regain some mobility. But of course, there's no way of knowing how much. Linda still has the same fear of movement, falling, and pain that she had before she broke her hip, and now, she has been in bed for far longer. But the physical therapist still said she believed there was some hope for improvement.  

Starting next week, the PT will come to work with Linda twice a week, on Monday and Thursday afternoons.  The caregivers and I will help her with her exercises on the other days, as well as trying to sit her up on the side of the bed and get her up in her wheelchair as much as possible.

Starting this month, I started cutting back on the caregivers' hours by a few hours on Tuesday, Wednesday, and Thursday. Starting next month, I'll cut back a bit more. Eventually, I think we'll be able to bring costs down close to what it would cost to pay for care in a skilled nursing facility. If Linda does regain some mobility, we also will consider skilled nursing once again, but Linda will have to improve quite a bit before that becomes a viable option. As she is now, a short-staffed skilled nursing facility isn't going to give her the care she needs, particularly overnight.

The caregivers we are working with have told me that some of their clients actually pay them to sit with loved ones while they're in nursing homes. These families are paying for skilled nursing and private-duty care at the same time, to ensure their loved ones get the care they need. I couldn't even believe that. Trying to navigate the options and costs of elder care in this country (or, I would guess, any country where multigenerational households aren't the norm) often seems downright impossible.

I think that brings everything up to date. Linda is doing well, all things considered, although her cognition and physical mobility are still not very good. But she has some clear moments, and she can lift her legs a little more now than she could a few weeks ago. It might be small progress, but it's progress nonetheless. 

Today has been relatively quiet--mostly because the caregiver I expected couldn't come today. But Marilyn came for a few hours to visit with Linda and me, and I've been able to handle most of the other tasks. So, although it's still hard, today wasn't too bad.

I will try to post more regularly, especially once the physical therapist comes for Linda's first formal session on Monday!