2-25-2023 Cognitively better, physically worse

 (Tricia)

Linda has had a few really good days over the past couple of weeks, in which she was awake, alert, and joking around with us. Yesterday, for example, she was awake the entire day. She usually takes several naps, or even sleeps most of the day, so yesterday was incredibly unusual. Of course, yesterday was also a day that Ed and I decided to take a day trip to Carlyle, IL, so we missed most of Linda's alert time!  But it was nice to have a day out, in honor of Ed's recent birthday. 

While we were in Carlyle, Ed was able to check his sailboat, which has been stored on supports, unused, for more than year. Normally, he comes to the lake several times over the spring, summer, and fall to sail, and we make a weekend of it at least once. But because of Linda's situation, he sadly put that on hold last season. After looking at the other boats stored by the harbor and talking a bit with the harbor master during this quick visit, we walked by the lake and then drove to Hazlett State Park to hike its trails. It was a much-needed time to relax. 

Happy day-after-birthday to this guy! -- Ed by Carlyle Lake, 2/24/2023

On our way back from Carlyle, we stopped and had a late lunch at the Blue Springs Cafe in Highland, Illinois (home of the "Mile-High Pie"...highly recommend☺). We had the most delicious coconut cream pie ever, and we also brought back some peach pie for Linda, which made her quite happy. Last night, when we asked her how she liked her pie, she smiled and said, "It tastes like 'more'!"

While Linda is still confused most of the time, we have noticed that her number of good days has been increasing. I attribute that to the fact that she is on fewer medications. We have stopped the medications that control her heart rate and manage her peripheral neuropathy pain--both of which have sedating effects. Her primary care doctor wants to see if she needs the heart rate control any longer (so far so good), and we have found that her neuropathy pain on her feet can be managed very effectively with an over-the-counter cream. 

But I can't say the same about Linda's physical condition. Unfortunately, she is now confined to bed most of the time. We often have to beg her to allow us to use the Hoyer lift, so that she can sit up in the Broda chair for at least two to three hours each day in the afternoon and evening. We manage to convince her on most days to come out and sit with us, but it can sometimes be a struggle. And because she is in bed so much, the area of her pressure ulcer at the base of her spine is beginning to open up again. So, we are going to be especially diligent about keeping a wedge pillow under her and regularly moving the pillow from side to side to keep that from getting any worse.

I also do not know how much the fracture in her knee has healed after three months. She will go several days without mentioning it, but then she might cry out that it hurts her when the caregiver is moving her or when we're getting her up in the chair. We try to keep the brace on as much as possible, but I think the knee injury will effectively eliminate the possibility of any further physical therapy (even if she were willing). I have tried to get her interested in working on exercises that she could do, even with the injury, but she refuses 95 percent of the time. So, at a certain point, I know I just have to let her be.

The hospice nurse still comes once a week to check on Linda and change the dressing for her nonfunctional drain installed in her side. (Oh, how I wish I had had that thing removed while she was in the hospital!) The hospice bath aide, Chris, also comes once a week to give Linda a bed bath, although that has been an unexpected source of stress. The newest caregiver has taken a dislike to Chris (she has taken issue with how Chris does the job, for whatever reason), and is outright unfriendly to her. Linda and I obviously do not need this in our lives right now, and Chris most certainly doesn't either!  I know at some point I might have to make a caregiving change (for this and other reasons), but I do not have the energy to deal with that right now. So, I just asked Chris to come on a different day, when this particular caregiver is not here. Not a complete solution, but I hope it will be a solution for now.

We are in a holding pattern at the moment--which has become an increasingly familiar place for us to be. I have no idea if Linda will be able to remain off her heart medication, but we will be monitoring for any spikes in heart rate or blood pressure that will indicate whether we need to resume. Right now, she's in her room watching television and calling for our cat Hopscotch to come and cuddle with her. (Hopper, for his part, is not obliging, because, well ... he's a cat.☺ Perhaps he'll accommodate her request later.) 

But, hopefully, we'll get her up for dinner tonight, although we never know how she'll react. When Ed and I were talking yesterday about what it's like to be managing Linda's care, we agreed with this sentiment: "Every day is different, and yet, every day is exactly the same."