Ava began the day with mom this morning. She said that mom was already in her wheelchair even though it was very early in the morning, and mom was fast asleep. Ava said mom was doing the “squinty” eye thing she does but wouldn’t open her eyes for Ava at all. She did mom’s full physical therapy/range of motion exercises but mom didn’t wake up or open her eyes. Ava also said that mom seems to have been assigned a new CNA for the day shift!!! Oh no!! Here we go again with reteaching someone how to do the bare minimum the facility does already. We loved mom’s other day shift CNA. I am hoping it was just a change for today…
Anthony came next to see mom. He said she was sound asleep the first 45 minutes he was there and he couldn’t wake her. He did her physical therapy/range of motion exercises again anyway while she slept. He said that when she woke up, she was very, very drowsy so they just talked and watched TV. Dad joined Anthony and Dad said he did mom’s exercises again in the mid-afternoon. He said she slept a lot. He also said that he talked to the head of respiratory today and asked when mom would get back to a trach collar but the respiratory person just maintained that, though mom is definitely progressing, she still has times at night or when sleeping when she isn’t breathing over the vent…. I say she needs more MOTION!! The physical motion stimulates her brain…at least from what I have seen. Dad also talked to a nurse about the possibility that mom doesn’t get fed (still through the G-Tube) at, and throughout, the night. The nurse agreed that the high protein formula mom is getting shouldn’t be given at night and would seem to prohibit and interfere with sleeping. The nurse said that the food is given at night so that feeding doesn’t interfere with the day’s activities. We need to look into this. Dad also read about optogenetics in his Popular Mechanics magazine and shared the theory with the head of respiratory, who was intrigued and surprised to hear of such a treatment option.
When I saw mom, later in the afternoon today, she was awake but definitely not talkative and seemingly stubborn or “in a mood.” She has been this way with me for days now. Today was comical and definitely “vintage mom” though. I began a conversation with her when I arrived, asking her who came to see her today and whether she ate anything today etc. At one point, dad had told me he brought mom a new magazine today, so I asked her, “Mom, did dad bring you a new magazine today?” To which she replied, “No.” So I replied, “Yes, he did, silly, it’s right here. Look.” To which mom replied, “Then why did you ask me?” I cracked up!!! She gave me the correct coinciding look of disgust and everything!!! Too funny!!!
John came to see mom this evening. He said that mom was out of sorts. She was awake when he arrived but she didn't really interact with him at all. He tried talking to her but she didn't respond. He said that she knew who he was and appeared to be happy to see him at first but then went into a mood that looked like she was maybe depressed or annoyed or angry...or disgusted. He and Dad thought she looked like she was in pain most of the time so they called the nurse and the nurse gave her tylenol. He tried to do her physical therapy but had to stop working her hands because she winced so much and said, "Ow" alot. He tried to do the sewing card but she took it and put it down over and over so he said, "OK we don't have to do this." Dad called the respiratory therapist to change her trach tubes and filter and she appeared better. John was also concerned because she did alot of shaking of her hands and arms. This could be a good thing though so we need to have the physical therapist assess this for us. i am wondering about the food she is eating. When you think that she hasn't eaten by mouth in 8 months, maybe the food she is trying is too harsh and the process/content of what she is eating is making her uncomfortable in her stomach and intestines.
In class, I was watching a video with my students about a child with autism and the speaker was talking about the importance of having a right attitude and hope. And he said 2 things that spoke to me, “Looking at where a person is functioning today tells me nothing about where that person can be tomorrow” and “How can I kiss the ground that others curse?” All could think was, “Wow.” This applies so much to mom and helps to put things in perspective, once again, for me. The first statement speaks for itself. The second one is intriguing. It makes me think way back to almost the beginning of when this happened to mom, and how I tried to look at mom and my relationship with her through a different lens. How life is such a mystery. How the things that happen to us during a lifetime are a mystery. I guess that, when I thought about that comment of kissing the ground that others curse in reference to mom today, it made me remember that mom is still mom at her core. She is still there. She is just in a different state of being…and I remember that there are times when I am with mom now and it’s OK. There is still closeness there. There is still love there. It’s just different. And I remembered what I used to say way back when…if I can shift the lens, from me and my needs, to her and her needs…then this is such a wonderful opportunity to give to her. To love on her. To give back to her for all she has given to me. Not everyone has the chance to do that for a loved one. But I do now. Something to think on.
Nehemiah 8:10 "The joy of the Lord is your strength!!"
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