1-2-2022 Linda finally "escapes"! (temporarily)

(Tricia)

I know it has been a while since I've posted. With so much going on with work and Linda's care, I've let the blog get away from me! (Thank you, Marilyn, for continuing to share updates!)  But it's been a whirlwind couple of months. Linda has continued to improve, slowly but surely. 

Last week, we went with Linda to an appointment I had made with a neurologist. It was the first time Linda had seen a neurologist since she left the hospital in July. After the exam, the neurologist said that he is going to order her MRI scans from St. Luke's to see what they show. Like other doctors, he said that he believes something else had to have happened (such as a stroke or seizure) for Linda to have been so negatively affected, given where her sugar levels were when the EMTs arrived. He also prescribed a drug that he says has shown promise in helping patients suffering from brain injury improve their cognitive function. We'll wait and see if it has an effect before we follow up with him in March.

As Marilyn mentioned in her last post, on New Year's Day, Ed and I decided we were finally going to see what happened if we took Linda out of NHC and brought her to our house for a few hours. We wanted to see 1) whether she could get in and out of the RAV4, 2) how well we could get her up the two steps into our house, and 3) how well we could manage her sugar levels once she was in our care. I was very anxious about all three of these things! But all in all, things went very well.

1) Once we arrived at NHC to pick Linda up, the nurse gave us instructions regarding her insulin timing and dosage. We also met with Justin, the occupational therapist who has been working with Linda four days a week to help her practice walking and getting up and down out of a chair. He was skeptical that she would be able to get in and out of the car safely, so he came out with us to help. She put everyone's concerns to rest in about five seconds! Once we wheeled her to the car and opened the door, she grabbed the strap that we had bought to hang from the door frame, pulled herself up, and had herself in the car before Ed and Justin could even offer to help. Once she was in the car, she said, "I told you I could do it." Yes, she did. :-)

Once Linda was in the car, we drove a circle around the parking lot to show Linda the outside of the building. She has been outside three times before to go to doctors' appointments, but she still is convinced that the facility is a multistory building with an elevator. When she saw it was just one story, she just kind of said, "Oh." When we showed her which window was the one to her room, she insisted that it wasn't. (Later, when we brought her back, she also was incredulous that this was the right building. She kept saying, "This isn't it, is it? This can't be it!" I think she still is convinced that the building has several floors!) 

Next, we drove to Marilyn's house, to give Linda an idea of where Marilyn lives in relation to NHC. She recognized Marilyn's house immediately, pointing it out before we did. But when Marilyn came out with her dog Sassy, Linda asked, "Who is that?" claiming that she did not recognize her. We kept telling her that it was Marilyn. But while she said, "OK," I'm not sure she believed it.

2) Finally, we drove her to our house, which is about 15 minutes away. Just like she did as we approached Marilyn's house, she pointed out our house before we told her which one it was. That tells us that her memories are still in there, somewhere--she just has trouble accessing them directly! She had a bit more trouble getting out of the car than she had getting in, but we were able to help her up.  She wanted to use the walker to get to our front door, which has one large step leading up to it, and another small step to get in. She was able to get her leg up and get herself up each step with only minimal assistance. Another success!

3) At that point, we just wanted her to have as normal a day as possible. We sat in our family room and watched "The Librarians" (although I couldn't tell if she liked it or not). At a certain point, she seemed to be getting tired. We checked her sugar--it was in the 300s, which concerned me, but it was simply still high from lunch. We took her to the guest room where she has always stayed when she visits, and she slept for about 45 minutes until we had dinner ready. Ed and I watched a YouTube video on how to administer the insulin. Even though the nurse at NHC had explained it, we obviously wanted to get it right. Not even a minute into the six-minute video, Linda had pushed her sleeve up, saying "What are you waiting for? This video is boring!" As far as she's concerned, the insulin is no big deal. For Ed and me--not so much. :-)

It was nice to have her at home for a change and have a real meal around a dining room table. It also was nice to be able to prepare a meal that I knew would be good for her and keep her sugar under control. A couple hours after the meal we prepared for her (pork chop, lots of vegetables, a small bun, and some sugar-free apple pie for dessert), her sugar was 210. That's right where the facility has told us they want it to be before bed. 

I could write a whole other blog post on the trouble we have been having with the nursing facility where food is concerned. When NHC is handling the food, her sugar is regularly above 300 and 400, because the kitchen will often ignore my notes on the meal tickets asking for them to bring her the lower-carb dessert options (giving her cobbler instead of gelatin, giving her two cookies instead of the one I ask for...sigh). Right before Christmas, the "activities committee" handed out cookies to her, which sent her sugar to 500+, which is so high, the nurse is required to call me to let me know. To their credit, the nurse also told me about the cookies. But still...

It has been an ongoing battle. I do not understand how the nursing facility can be so cavalier about the food, with the dietician, nursing staff, and I would think even the kitchen staff now knowing full well that high-carb meals are the worst thing to serve a diabetic. They tell us there's "nothing they can do," because the kitchen staff "often do not read the notes on the tickets." I've asked what they would do if someone had celiac disease and was extremely sensitive to wheat. Their response? "We have never run into that scenario." 

I get so angry that they actively OFFER her these high-sugar desserts when we're not there to run interference--I'm at wit's end. Next week, I'm going to speak to the facility manager and dietician, and try to hold my temper while I ask them to come up with a workable remedy. There has to be something they can do to prevent the staff from continuing to give Linda high-sugar foods that we do not order for her. This doesn't seem like a hard thing, especially for what is supposed to be a medical facility. But for some reason, they keep telling me that it is.

The good news is, though, that Linda is getting stronger, albeit that strength is inconsistent. About three weeks ago, she was able to get straight up out of bed and walk around without any help at all except the walker, for the very first time. She hasn't been able to do that quite as easily since then, but the very fact that she did it once means that she should be able to do it again. It's also so promising that we were able to take her home, even for a short while, to give her a break from the nursing facility, if and when she wants it. (Marilyn might have something to write about Linda's reaction this morning to her New Year's Day adventure! Not what one might expect...)

As long as her recovery continues on an overall upward trend, even if she backtracks here and there, we'll keep hoping for more to come.