Aunt Carol and I began the day with mom. She was dressed and had her make up on and was in the wheelchair sleeping. The CNAs all put her make up on now for her – “to get her used to wearing make up when she goes home.” We woke mom and she said she was soooo surprised to see Aunt Carol. Mom talked so much to us. We were thrilled! A worker came in to change mom’s bed. She now has a bed that lies flat on the floor when she is unattended. Mom kept telling Aunt Carol and I that she is tired today. We asked what time she went to bed and she said, “Oh I stayed up until 10:30 watching TV.” This is her first reference to time!!! I told mom, “Hey! No watching TV at night! You have to sleep at night” and laughed. Mom said, “Who says I can’t watch TV at night?” I said, “Me” and mom looked at Aunt Carol and said, “Oh I’m so glad she’s here” in a sarcastic tone with a sarcastic face!!!! Mom told Aunt Carol, “my brothers came to see me.” And she remembered with no prompt that Uncle Ray brought his accordion! She also remembered, with a phonemic cue, that Uncle Mike brought her flowers. We moved to the lounge near mom’s room (more space to visit). Mom and Aunt Carol sang a song they sang when they were little children in Brooklyn. Mom knew all the words. It was a really silly song too! When I asked mom what she and everyone talked about over the weekend, mom said, “Oh 48th Street” with no prompting!
Anthony, Con, Anthony Michael, Samantha, and Gina came to see mom next. It’s Gina’s birthday today. We told mom that Michael is at camp. Mom said, “Does he feel left out?” Anthony Michael asked mom, “Nonny, can you do me a favor and spell Anthony” Very quickly, mom spelled his name. Anthony asked, “Can you spell Constance?” Mom quickly spelled it. Then, Samantha said, “Can you spell Samantha?” Mom said, “BRAT” and we all laughed!!! Anthony had mom spell, “chair, green, parrot,ship…” then he asked her to spell, “Restroom” and mom said, “Men’s or Women’s?” Mom’s ability to spell words is amazing!!! And she spells with not only great accuracy, but great speed as well. The girls, Samantha and Gina, worked on the “What’s Happening” cards with mom. She was able to answer many, many questions. Mom kept staring at Anthony and asked him “Where were you on Sunday?” We all sang, “Happy Birthday” to Gina, mom sang too. One of the workers came into the lounge and asked if they ever said Happy Anniversary to mom and dad on Saturday and asked mom how many years she is married. Mom said, “Too many years!!” and laughed. Mom frequently said she felt “so out of it today for some reason.” Mom also said, “Why can’t I talk?” a lot. Samantha did mom’s nails too. Sammy filed, clipped and polished mom’s nails. At one point, I was being affectionate to mom and I began to stroke her hair and mom jerked away and said, “Hey! Stop that! Don’t touch my hair!” THIS IS SOOO MOM!!! Her golden rule was always, “Don’t touch my hair.” We all laughed! Later, mom did let Sammy comb her hair! Mom and Aunt Carol and the kids played with the letter blocks I bought her---making words. Mom did well. She even made a few words herself---‘water’ was one. She wanted to spell ‘watering can’ so Sam helped her with the rest.Mom is beginning to initiate conversation and initiating interactions in a conversational way and this just started today.
We spoke to the head of respiratory today and it was explained to us that, most likely, within 24 hours of being decannulated (trach out totally), mom will be moved to another floor. On the floor she will be moved to, mom will receive rehabilitation---physical therapy (continue), speech (feeding therapy), and occupational therapy (self-help skills). There will be a rationale to keep mom at the facility due to reasons and need for rehab. I was worried that the transition to home would be too quick! Our intentions, once the trach is out and the stoma (hole in the throat) is closed, are to get mom into a more aggressive rehabilitation facility. I had a lengthy discussion with the head of therapies. I asked for Occupational Therapy to be added onto mom’s regime now. I want self-help skills to be worked on (dressing, eating, grooming…). I got the OK on it. Occupational Therapy will begin later this week. There was a fear of pushing too many things on mom at once and either frustrating or tiring her out (on the part of the therapists), but from what we see each day, mom can take it. The head of therapies talked to me for a long while (over an hour) and spoke about starting an educational center at the facility. Our family and I were asked to be part of this program---informing families of what they can do and how they may feel…--once the center is opened!! The head of therapies said that when we gave out the “Don’t quit 5 minutes before the miracle happens” T-shirts, it inspired everyone. Some thought it was a message of criticism oddly enough…but the majority of the staff, including the head of therapies, said that it was taken as the message of encouragement and inspiration it was intended to be. The head of therapies said that the T-shirt hung on the wall of their office for many weeks as an inspiration to them all.
The head of respiratory asked mom if she enjoyed the barbecue the other day and mom said, “Oh yes” and the head of respiratory said, “You certainly did! You were a pip that day!” Mom said, “Oh I was not!”
Sammy wrote: Samantha made beautiful string bracelets for her family and asked nonny if she wanted one and what color. Mom said red and orange green and blue shiny yellow purple too and every one started to laugh. The recreation therapist came in and was talking to the family and nonny and the recreation therapist started to play with nonny’s hair and nonny told the therapist, “Stop touching my hair.” Then the therapist said, “Well I will see you later” and nonny said, “ok as long as don’t mess my hair” and everyone laughed. Then Aunt Kathy left with aunt carol to get food and me Anthony dad mom gina and pop stayed and nonny told mom that she had to go to the bathroom and con said ok just go but nonny didn’t want to and said, “Where? On the floor?” Then nonny looked up and said, “Well it says ‘RESTROOM’ on that door. Just take me in there to go.” They had to explain that she couldn’t go to the restroom now.
Mom left for Physical Therapy next. The therapists said that, in the last 2 weeks, mom now moved from following 25-50% of the exercise directions to following 100%!!! She has used 2 lb. weights on her ankles over the last week. They are giving her 3 lb. weights starting tomorrow because mom just moves so quickly through her 2 lb. weight exercises!! Mom also independently grabbed the handles on the walker today and stood again but in a stooped over position for 2 minutes each attempt! They tried to get her to take a step or two but mom said she was afraid to do it. They are thrilled with her progress!
After PT, Anthony, Con and the kids left. Aunt Carol and I sat with mom and she dozed. She woke when dad came back and we kissed her good-bye. I told her I would bring Aunt Carol back soon and mom said, "Carol...please don't go back and forth like that." Ever looking out for her "younger sister" who is her dearest childhood friend of 72 years!!!! Dad left when John arrived to be with mom. John said that mom talked and talked all night. She was glad to see him. He took out a deck of cards and tried to have mom match the cards (Ace through 10) but mom couldn't do it; all she did was pick up cards so John adapted the activity to meet mom's needs. He began to ask her to give him certain cards, "Mom, give me a 4 of clubs" or "Ace of diamonds" etc. Mom did great with this activity! John asked mom who liked to play cards thinking that mom would say Grammy but mom said, "Coici Kazia!! But she cheated!" She and John reminisced being in the Country house playing Pinnocle. She only had trouble identifying clubs and spades. She knew heart and diamond. He taught her the names by showing her 2 cards and telling her, "This one is a spade. What is this one?" and mom answered. He did the same with clubs. However, 10 minutes later, mom forgot again so he would do the same activity over again by presenting 2 cards (club and spade). Mom knew she was answering wrong but didn't know what to say. Then John gave her some buttons and the lace. Mom actually sewed 2 buttons together in the manner that you would typically sew buttons. John tried to sew them by lacing around the outside but mom knew this was wrong and did it correctly. John assisted mom at times. Sometimes, John put the lace through and then mom put one through. Mom went up and down the 4 holes in the button. Sometimes mom put the lace through the same hole. Then they looked at the pictures on the wall and John asked mom who was in the pictures and mom named everyone. Then, John told mom to get better so she could cook for him and she asked what he wanted her to cook. John said he wanted her to cook mussels and mom said, "I don't think I know how" John told her she would remember. Then he said he wanted Easter Pie and Peorogies and mom laughed. Mom talked the entire time John was there. John said mom actually cried when he left when he put the mitts on her hands...she kept saying "Everyone is so mean to me. This is mean. Call Claudia and she will cut these off for me.You treat me like I am in jail. Why am I in jail?" She also didn't want her head to be near the bed rails and she said she wanted the bed rails cut off. Mom moved all the pillows off the bed too. Once the trach is out, mom won't need the mitts. John and mom prayed together and he kissed her good-bye and she looked like she was praying and John left.
"My heart took delight in all my work, and this was the reward for all my labor." Ecclesiastes 2:10
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