10-16-2022 An uncertain future

(Tricia)

I am still incredulous that six months ago, Linda was placed in hospice and given just two months to live, and today, she is out of hospice, receiving physical and occupational therapy, and making incremental but consistent progress. We did not think we'd have another holiday season with her. If all things continue as they are, and we all have another Thanksgiving and Christmas, it will be amazing.

At the same time, I am well aware that Linda's health is still fragile. A bad outcome is always just one episode of C.diff or one infection away--or, as she becomes more mobile, one fall away. We are always on the alert--today, for instance, she is lethargic again and can barely open her eyes. Normally, we would have gotten her up in the wheelchair by now, but she has been in bed all day. All of her vitals are fine, and there are no signs of any underlying illness. She says that she feels fine, but that she's just really tired. So, we can just hope that it's nothing more than that and wait to see whether she perks up later. 

All that said, I certainly can't blame her--I'm exhausted myself! I've been looking for ways to make the caregiving role more sustainable and less physically and mentally taxing. But I realize that caregivers the world over are searching for the same solutions! If I find the magical formula that makes all of this easier, I will be sure to share it far and wide. :-)

So far, Linda has received three in-home sessions of PT, three sessions of OT, and one session of speech, all covered by insurance.  The therapists tell me that insurance has agreed to cover a total of three weeks (twice a week) of PT/OT, at which point they will have to re-evaluate and see if Anthem will cover another three weeks. We are still waiting to hear if further speech therapy will be approved--the speech therapist did not seem overly hopeful, but maybe that will work out as well.

As usual, whether Anthem continues to cover these sessions depends on whether Linda is "making progress." Luckily, she has been making progress so far, and it has been less than two weeks.  We have reached the point where she can stand with a two-person assist and lean on her walker. While she cannot yet pivot or take a step, we have been able to transfer her from bed to chair without the Hoyer lift a couple times now. We're still not to the point where we're comfortable doing that all the time, but she's getting there.  

Of course, she's primarily fighting the faulty signals from her brain. Both the PT/OT have said that they have been surprised at how physically strong Linda is--the problem is that she applies that strength in the wrong direction.  She pushes back when she should lean forward. She pushes against us when we try to help her stand up when she should be working with us. When we ask her why, she says that it's because she's "afraid of hurting us" or that she "doesn't want to be told how to do it."  Occasionally, she'll say that it's because she's afraid of falling, which is understandable, but that's usually not her first answer.

When the therapists try to sit her up on the side of the bed, she pushes herself back or to the side, so that it often requires three people to push her up to sitting and keep her there. I am often behind her, and I have to brace myself against the wall to keep her in place--not because she is simply falling backwards, but because she is actively pushing back against me! But twice now, after the caregiver and I have stood her up, she got so angry that she couldn't take a step and walk that she demanded to sit back down on the bed. When we sat her back down, she sat normally--straight up, hands on her knees, with no support at all. She wasn't thinking about sitting. She was just doing it.  

I took a picture of it and showed it to her later.  She just said, "I don't know why my brain tells me I can't sit up, but I can't."  Of course, I said, "This picture proves you can!"  I'll show the picture to the therapists next week to see if they have any good ways to distract her. Her difficulty with taking a step forward is likely caused by the same faulty "I can't do it" signal. 

We are still not quite sure where all of this is going, but as always, we're hoping that Linda can prove the doctors at Mo-Bap wrong. It will be incredibly interesting to see how she responds to therapy over the next two weeks and whether she can rewire that brain so that she take that first step.