Claudia began the day with mom. She said mom was in a great mood and wide awake. Claudia did physical therapy/range of motion exercises on her hands, arms, and feet but didn't do her legs because, after she did mom's hands and arms, Claudia gave mom a magazine to read with the lap desk on her and mom was actually mouthing the words reading the magazine, so by the time Claudia got to mom's legs, she didn't want to lift the lap desk and disturb her. As Claudia was doing mom's right hand, Claudia asked mom, "Hey, do you want to hear a story?" Mom mouthed, "No" so Claudia said, "You don't want to hear a story?" Mom said, "No, I want to say" so Claudia said, "You want to say something?" and mom mouthed, "Yes" and then grabbed Claudia's glasses off her face and looked at Claudia. Claudia said, "Oh my God! I never put your glasses on this morning! You can't see?" Mom mouthed, "No." Claudia said, "You need your glasses?" and mom mouthed, "Yes."
Anthony said that the game plan for getting mom off the G-Tube (feeding tube) totally is the following. The speech therapist is going to feed mom breakfast and lunch next week and monitor how mom does. Then, perhaps the week after, mom will eat 3 meals a day. The feeding tube liquid will continue to be given to mom over the next few weeks 2-3 oz. an hour for 12 hours, until mom shows that she can tolerate the food by mouth. Mom will also be monitored for stomach and intestinal discomfort. Anthony said that mom totally enjoyed the meal yesterday. He said she was grabbing for more food before she finished swallowing and/or before the therapist offered her more. The therapist wanted to feed mom so that the experience could be properly monitored and controlled.
Mom’s friend, Florence, came to see mom this morning after Claudia left and before I came. Florence said mom was asleep and she couldn’t get mom to open her eyes for anything. But, Florence sang “City of God” to mom anyway. Mom mouthed some words but Florence didn’t understand. Florence decided to just sit with mom and pray for the remainder of her visit. She said one of the respiratory people came in and that he was wonderful.
Mom said “Hi” when I arrived. The respiratory therapist and the pulmonologist and nurse came shortly after I arrived. They all said she looks great! They are going to lower the vent PSV setting from 12 to 10. This, again, controls how much mom is able to initiate a breath on her own. She is doing well with this now. She mouthed, “Good Morning” to them all and answered their questions. They are pleased with her progress. I asked her if she ate today and she mouthed, “Yes” but she couldn’t remember what she ate. I am not sure if she actually did eat before I came or not. I put the Magna Doodle (like an etch-a-sketch) in front of mom and showed her how to do it but she wouldn’t do it so I asked her if she wanted to do it and she mouthed, “I don’t think so.” Then I put a book on Grammar on the table and showed her and she looked interested, so I asked her if she wanted to read it and she mouthed, “No, you read it to me.” So I did for a while. When we had the Magna Doodle out, I showed mom how to use one of the tools that comes with it to color in the entire screen, and I asked if she remembered how, when I was a young girl, she taught me how to cook? Mom smiled broadly and mouthed, “Yes” and then I asked if she remembered telling me, “When you stir the pudding, make sure you touch the entire bottom of the pot…make believe the spoon is a paintbrush and try to “paint” the entire bottom of the pot” mom mouthed, “Yes, I remember” and smiled. I asked her what she wanted to do and she mouthed, “What’s that over there?” looking across the room. She was looking in the direction of the MagnaDoodle I had put away. I asked if she wanted it but she didn’t answer. At one point, mom took the pillow from around her neck and pointed to her ear over and over while looking at me. I said, “Oh, you want your other hearing aid?” She mouthed, “Yes” and I told her it was being fixed but would be back soon. I asked if she wanted to do a crossword puzzle and she smiled and mouthed, “If you want.” We began to do the puzzle –though she didn’t guess any of the clues at first, she paid attention and mouthed, “I don’t know” or “Oh, it ends in T?”… We stopped for a while because the speech therapist came in to feed mom lunch…noodles and broccoli and beef burgundy with mushrooms! She also had juice and milk as well. Mom kept grabbing for the tray at first and also tried to grab the cup too. The speech person tripled the plastic cup to give it some substance---mom’s grip is strong. I suggested a straw because mom seemed hesitant about sipping and tipping the cup. Mom sucked through the straw with no problem! She then lifted the cup with the straw to her mouth 80% of the time or so and drank by herself. The therapist fed her the food though for now. Mom appeared to be trying to act “casual” while the therapist fed her. Mom’s old aide came in to watch her eat and she cried when she saw mom eating! I asked mom if it tasted good and she made a face like, “Delicious!” and shook her head yes, several times. The therapist asked her if the meat was tough because some of the residents complained it was, and mom made a surprised face and said, “Oh no!” Mom appeared to be a little embarrassed while she was being fed. She ate well though for the most part. Mom would sometimes appear to be disinterested with eating at times though and the therapist would have to coax her to eat more. The therapist said that mom ate breakfast too---pancakes and 2 cups of juice. I asked mom if it was good and she mouthed, “Oh yeah!” I asked if I should buy mom another cup—a stronger one but the therapist said that she may have the Occupational Therapist come to help mom with eating. We resumed the crossword after mom drank 90% of the cup of juice and ate about ¼ - ½ of her lunch. The clue was “Fuel for the car” then I said, “What do you put in the car to make it run? You and I joke about not knowing how much it costs!!” mom mouthed, “You put gas in the car.” The next clue was, “Shred as with cheese” and I added, “What do you do with the cheese to shred it? It starts with a GR….you grrrrrr….” Mom mouthed, “Grate it.”
Mom’s CNA was laughing and said that mom was “moody” with her yesterday because she asked mom to tell the other CNA what her name is and after asking mom several times what her name is, mom rolled her eyes at them! Mom’s CNA also said that mom took the mitts off her hands herself today!!!! This is not good! The CNA passed mom’s room and saw mom’s mitts on the floor! The CNA said that she noticed that, when mom squints her eyes shut tightly, she is concentrating really hard on something...much more than she can when her eyes are open.
When Dad came, I told him that mom wouldn’t tell her CNA her name yesterday, so dad said, “You wouldn’t tell them your name? How come you rolled your eyes at them? Why weren’t you being nice?” Mom mouthed, “I WAS being nice!” Dad said that yesterday, at the hospital, the doctors there asked why mom has not been given a speaking valve????!!!!! They said she is trying to speak and it is important, so they wrote a prescription for one. Dad and I need to track it down and see what can be done for mom regarding this. We were told the valve in the trach can’t be used yet because mom needs to be able to breathe more on her own. Dad says this is a different valve that goes elsewhere in the line. Today, we told mom to tell the CNA her name---so the CNA asked mom what her name is and mom looked at her and mouthed, “Dorothy Gilman” very matter of factly.
We continued the crossword. The clue was “Treaty” I also said, “An agreement between people…starts with a P….” Mom mouthed, “Pact.” The clue was, “Breakfast chain.” I added, “You go there for pancakes and it starts with I….” mom mouthed, “IHOP” and dad said, “I SIT” and mom cracked up!!!! Next clue, “Service station fixture.” I added, “Get gas at the …. Starts with a p….” mom mouthed, “Pump.” The clue was, “Writes down on a ledger” I added, “You re….” mom mouthed, “Record.” The clue was, “Feel sore” I added, “Starts with an aaa……” mom mouthed, “Ache.” Next clue was “Strongboxes…” I said, “It starts with sss…..you lock money in it” and dad said, “Coffee cans..that’s where Aunt Sophie puts her money!!” Mom laughed and laughed. The clue was, “New___, India” I added, “Starts with a D” Mom mouthed, “New Dehli?” I told mom that I was leaving soon (it was now late afternoon) and that I was leaving her and dad homework to do while I was gone, "No TV and hand-holding" I teased---to this, mom mouthed, "Get out of my face!" twice!!!! Too funny!! I had a good laugh. We all are also noticing that mom is using a lot of body language lately. The other day, she knocked on the table to get Anthony's attention. Mom began to get sleepy then. I left and Dad stayed with mom and tucked her in for bed later.
"We put our hope in the LORD. He is our help and our shield" Psalm 33:20
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