I began the day with mom this morning bright and early. When I arrived, mom was out like a light!! Mouth open, drooling, sound asleep. I tried to wake her but no luck. The breakfast cart was just brought to her unit and breakfast would be served soon. I talked to her, opened her eyelids, wet her face with a cold wash cloth, did her full physical therapy/range of motion exercises, put her hearing aids in, played some loud, peppy ragtime music…nothing. She would briefly open her eyes but shut them and go back to sleep very quickly again. Her CNA arrived with her breakfast and she and another CNA pulled mom up high in the bed and straightened her out well then the CNA called respiratory to suction mom before eating. This CNA was with mom many months ago in the 2nd room she was in and she loves mom so much. She primps over her, and treats and cares for her so well. I couldn’t wake mom for anything!! I kept doing these things over and over. When the respiratory therapist came to suction mom, mom sort of woke up so I began to feed her some scrambled eggs (she had scrambled eggs and oatmeal, orange juice, coffee, and a croissant). Though I predominantly fed mom her meal, she was grabbing the spoon from me to feed herself by the end of the meal. Thank God. As she ate, I talked to her about my morning. Claudia usually is with mom in the mornings and Claudia usually talks to mom and tells her what she made for dinner the night before. As I fed mom and chattered, mom looked at me and mouthed, “So what did you make for dinner last night?” but she said it so quickly, all I could understand was, “So what did you make.” I repeated what I knew she said and then asked her to repeat the rest again. She repeated the phrase 3 times, but quickly. Finally, when I asked her to repeat it again for the 4th time, mom looked at me and slowly enunciated every word!!!! She mouthed, “So (pause) what (pause) did (pause) you (pause) make (pause) for (pause) dinner (pause) last (pause) night? (pause)!!!!” I told her I didn’t cook dinner last night and she gave me a surprised and horrified look!!! I told her I ate in a cute, little Italian restaurant in Soho last night because I went with Claudia, John, Aunt Carol and Alyssa (Jean’s girlfriend) to see an independent film that Jean and John were in!! The film was playing in the Soho Film Festival!! Mom raised her eyebrows and mouthed, “Wow.” She listened intently as I told her about it all. At one point, someone slammed the door to mom’s room by accident and mom jumped and gave me a startled, frightened, surprised look!! This is great!! She hasn’t done that in a while!!I asked her if we should call Claudia to find out what she made for dinner and mom mouthed, “Yes” so I dialed and she grabbed the phone from me and put it to her ear (I told Claudia it was mom and to talk to her). When I could hear Claudia’s voice, I asked mom who was on the phone and she mouthed, “Claudia” and then I asked her what Claudia was saying and mom mouthed, “The show” (she WAS talking about the show!). I told mom to ask Claudia what she made for dinner and mom mouthed it all and put her mouth close to the mouthpiece of the phone and mouthed it slowly and carefully!! After she spoke to Claudia, I asked if we should call Anthony and Con and she mouthed, “Yes” so we did. Samantha answered the phone (I yelled that she should talk to Nonny and she did) and when I heard her voice, I asked mom who was on the phone and she mouthed, “Samantha” and then Anthony got on the phone and when I asked again, mom mouthed, “Anthony.” Next, we began to talk to the CNA about dad’s birthday coming on Wednesday and mom mouthed, “Yes” and then the CNA asked how old dad would be. I said 79 and mom mouthed, “Yes” again. The CNA marveled and said that dad doesn’t look 79 and that he looks younger and mom mouthed, “Yes, he does look young” and smiled. I asked mom if we should have a birthday cake for dad on Easter and she mouthed, “Yes a cake” and then I asked her if we should secretly get dad a card and gift from her and she smiled and said, “Yes.” I told her to tell me what she wants to say in the card and that I would write it for her. She liked this idea. I asked her what she wanted to say and she mouthed, “Dear Jean” and fell asleep again! She kept falling asleep on and off. When she woke up again seconds later she mouthed, “What was I going to say again?” She did this twice. After she ate, she burped at 3 different times and said, “Excuse me” after each one! She read my shirt “Soho” and then we talked about when Lenny was young and didn’t eat very many things and I began to name the things he used to eat and mom mouthed, “Do you remember other things?”We did the calendar after breakfast was over and I asked mom what month it is and she said, “I don’t know” so I sang, “January, February, March…” and she mouthed, “April.” Then I asked her what day it was and did the same song-type of thing starting at Sunday and stopping after I sang Friday and mom mouthed, “Saturday.” I asked her the number of the day and mom didn’t know so I said, “Yesterday was the 15th so today is the…” and mom mouthed, “14th!!” I said, “Good 14 does come before 15 but what comes after 15?” Mom said, ‘15” and I said, “Not 15…after 15” and mom said, “16.” I took out the IPAD to sing songs with her but my oil man called to say he was delivering oil to my house so I had to stop and leave. I kissed her good-bye and asked if she wanted the TV or music and she picked music.
Lenny and I returned about 1 ½ hours later and mom was trying to eat lunch (fish, spinach and rice and tomato). Mom was playing with the food with her fork and making faces at the plate. We asked her why she was making faces and she mouthed, “Because I don’t like this food.” We kept asking her why she didn’t like it and she said, ‘Because it isn’t good.” We were trying to figure out what kind of fish it is and we said, “Maybe it’s goldfish” and mom said, “That’s disgusting.” Mom’s CNA went to get something different for mom to eat. She came back with pasta and peas and carrots and cheese in a brown sauce. Lenny told mom to thank the CNA---funny! Role reversal!! Hahaha!! Mom thanked the CNA. I tried to help mom eat by giving her a fork full of food and mom pushed my hand away and said, “Stop that!” in an annoyed way! “I’ll do it.” I was trying to coax mom to eat and she said, “I don’t want this.” I said, “but the CNA just went to get this special for you.” She said, “I don’t care. I don’t want it” She dropped a bit of food off the fork and Lenny said, “That’s ok nonny. Try again” so I said, “Yeah, how does it go? If at first you don’t succeed…” Mom mouthed, “Try try again.” As we talked to her and she ate, she became overwhelmed a few times and seemed to get confused and she put her utensils in her cup of juice and then she poured her applesauce into her pasta. We ended lunch shortly after that. Lenny cleaned her table when she finished and then mom grabbed a tissue and began to help Lenny clean the table. She grabbed the tissue aggressively and pulled it from Lenny. Anthony and Con came in and so did a recreation therapist. She told the therapist, “That’s Anthony.” We all talked and laughed. Anthony and Con ran to the store for supplies for mom and then mom fell asleep for a few minutes. When they returned, mom had a brief episode of belly breathing. Usually this happens when she needs to be suctioned or when she has a plug of mucus stuck in her chest. It lasted about 5-10 minutes or maybe less...the nurse came in to do her trach care while this happened and said that it is actually a good thing that was happening because it meant mom was breathing over the vent on her own and that it was difficult to do but she was doing it (this is what the respiratory person told us the other day as well). All of mom's numbers were good during this time but she looked like she was struggling. We ended up calling a respiratory person too, in addition to the nurse, and the therapist put mom on SMIV vent mode (vent breathing for her) for about 1/2 hour ---at which time, mom's breathing evened out and became typical again. Once she stabilized, mom was put back on the CPAP mode again. Just as the respiratory person arrived, mom's total rate went into the 80s...not good...should be in the upper 20s and 30s. So it was a good thing the respiratory person arrived in time to help mom out. When Lenny and I left, dad and Terry joined Anthony and Con. They said mom was awake and asleep alternately and did some laughing and talking but was mostly peaceful and quiet. Dad said she ate her dinner and Terry said she tried to feed herself too. Dad and I went to dinner and then, when he returned, mom was asleep. He sat with her and then tucked her in for the night and went home.
Please pray for dad, his birthday is Wednesday and in addition to that, he (as well as us all) is used to the big, beautiful meal and celebration mom prepares for Easter with our family and friends...so please keep dad in prayer. Thanks.
"I will say of the LORD, "He is my refuge and my fortress, my God, in whom I trust."Psalm 91:2
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