I began the day with mom this morning. Her CNAs had her up bright and early and gave her a shower. After they dressed mom, one of the CNAs asked mom if she wanted her make up on today or not. Mom said, “Oh yes” so the CNA set about lovingly putting on mom’s make up. Then mom and I went outside. She loves to “people watch” – she always has. I told her we can get jobs sitting outside the facility greeting people as they come in! She laughed. We had sooooo much fun outside!! We laughed so much! At one point, several ambulettes pulled up to the curb and the EMTs left the vehicle and went inside but left the vehicles running. Mom said, “Why are they running? What a waste of gas!” She speaks very low so we are always asking her to speak louder. When I asked her why she was talking so low, at one point, she said, “So I can annoy Kathy” which is so like mom’s typical sense of humor. I told her we were going to call her “LT” for “Low Talker” like on the Seinfeld episode. We made phone calls to Florence and Maureen and Nancy. We were only able to speak to Florence, the others were not home. I told mom we should be working but that I didn’t feel like working now and she said, “That’s OK, I don’t want to either” and she laughed. She was the most normal and typical today than she ever has been!!! It was medicine for my soul! We called Anthony and Samantha and talked to them on the phone too. I told mom that Donna and Stevie ask for her a lot too and ask how she is doing and mom said, “Oh really? That’s nice but I’ll have to tell Donna to stop being so nosey!!” She’s baccckkkkk Donna! LOL We sat in the shade outside but mom said she wanted to be put in the sun so we moved there for a few minutes but I moved her back to the shade so she wouldn’t get sunburn. We called dad to ask him to bring sunscreen and she said, “Oh leave dad alone, he’s probably so busy doing things!” When I moved mom back to the shade, she teased me and said, “Oh now I’m so cold!” She joked and laughed all morning. We did a crossword puzzle next:
Clue Mom
“Less than twice. Starts with O” “Once”
“Water between the U.S. and Europe” “Atlantic Ocean”
“Spanish Mrs.” “Senora”
“Banking machine” “ATM”
“Spaghetti sauce brand starting with R” “Ragu”
“Organized, put things away starting with N” “Neat-nick”
We were outside for 2 hours. Mom became sleepy. The speech person came to do some feeding with mom. The therapist tried some vanilla pudding with blue dye. Mom made a silly face to be funny and said it tasted blue! Mom appeared to do well. Then, the therapist tried some thickened water. The therapist asked mom to do things for her; she asked mom to do the following things and mom did them all with no problem: OPEN YOUR MOUTH, SMILE, PUCKER YOUR LIPS, STICK OUT YOUR TONGUE, MOVE YOUR TONGUE FROM SIDE TO SIDE, SAY ‘HACKKKKK with a hard K’ SAY ‘TAAAKKKKAAAA’ Mom didn’t much like the water (it was honey thickness and blue from dye). As mom drank, she held the cup in her left hand and the straw in her right hand. She moved the bottom of the straw in a circular motion around the bottom of the cup---when I asked why she was doing that, she said, “I want to make sure that I get all of it up the straw.” Then the speech therapist asked mom how she liked the water and mom said, “Well…” so the therapist said, “Well what? You can tell me” so mom said, “I was gonna say it stinks!” Mom asks people at the facility now what they are giving her (if it is medicine) and what they are doing when they care for her. The therapist then told mom that mom was going to have the cap of the trach taken off and be suctioned. Mom asked her how deep the red cap is. The therapist was very impressed with her question. The therapist said that mom would now go back on speech therapy and would work on swallowing and oral motor exercises (we have been doing this with mom for a looonnnnnggg time, so has Carmine!!). The therapist started to talk to mom’s roommate who is refusing to eat---the therapist was trying to convince her to eat so mom says, “Try Chinese Food!!” Then the therapist told mom’s roommate she’d go get the menu—mom said, “I’ll take egg foo young!” Shortly after the speech therapist left, mom was sleepy from being outside and she began to fiddle with the pillow on her chair and she asked, “Do I break this piece off and eat it?” I think she was confused then. So I explained the whole feeding process to her---how she has to begin with pudding and applesauce…so that the therapist can see how and if she can eat---mom’s reply was, “Me??? Have trouble eating?” and we laughed.
We worked on the sewing cards next. Mom managed to put the lace through several of the holes alone but then she fell asleep. I began to eat the sandwich I brought for lunch and then mom woke up. She looked at me and smiled in a teasing manner and asked, “What are you eating, I’m hungry!” then she laughed. She worked with the lacing card and lace for a long while—alternately napping in between. I tried to encourage her to take a lengthier nap but to no avail…finally, I put on some Mozart on the IPAD and she slept for a good 20 minutes before waking. When she woke, we listened to music and sang a bit—she kept saying she didn’t know the words, which is strange because she knew them a few months ago. We also did one of the counting apps as well. Mom was able to count 1-10 independently. We went over the calendar as we usually do each day, and mom followed the gestural prompts to verbally identify the month, day, date and year. This ability is something new; she usually gets confused and distracted by all the stimulus on the calendar. Mom was also able to tell me that ‘14’ comes after ‘13’—a new ability as well.
Mom went to physical therapy today. They said her progress is still miraculous compared to 2 weeks ago but that mom is not bearing much of her weight alone yet. They said the 2 male therapists are bearing the bulk of her weight. She does lift her bottom off the chair by 3 inches and she also initiates reaching for the walker and grabbing it to pull herself up. She is now using 3 lb weights and doing full knee extensions (from a sitting position bending/lifting knee out fully extended). Today, they tried to have mom stand with the walker on an incline so that it would be easier for her to stand but it only helped minimally. The head physical therapist said that mom needs more time and that her progress is still amazing.
After physical therapy, mom and I went back outside. I don’t remember if I mentioned it before or not but mom’s current roommate has the TV blasting all day and with the most disgusting, distasteful shows too. Frequently, we can’t even visit in mom’s room for lack of being able to hear. Once we got outside, mom wanted to do the IPAD and to work. So......we did the FUNCTIONS app. In this app, 3 pictures are shown, for example: a toy soldier, a camera and a rabbit—then the voice says, “Show me the one that hops” and you have to touch the correct answer. The selections become progressively harder and harder (one was a picture of a frying pan, a balloon and a cell phone and the voice asks, “Show me the one that has keys”). Mom FLEW through this exercise…!!!!!! In 50 selections, she only had one wrong and self-corrected it!!! She is amazing. We went back inside around 4 p.m. and I left mom (with her mitts on after reviewing the social story Claudia made for her) with the TV on until dad came at 4:30.
Dad and mom talked and watched TV until Anthony, Con, Anthony Michael, and Sammy came to see her tonight. Ava said that if mom is still upset with the mitts at night, she and Anthony Michael will sleep over on Friday night with mom. Mom’s first PJ party!!
Con, Anthony, Anthony Michael and Samantha went to see mom. Anthony brought a binder full of baseball cards. He has cards from the Brooklyn Dogders and old time Mets. She was reading the cards and saying how young the players looked. She was even able to pronounce the names of players that have very long difficult ethnic names. Anthony was very impressed. They talked for hours about baseball and the Mets and Dodgers. The woman in the next bed was being taken to the shower around 8:30 and they were all asked to leave. Samantha stayed with mom so she wouldn’t get upset. Anthony put the mitts on mom and it seems to be a trigger for her. As soon as the mitts go on mom starts to talk about leaving. When Anthony and Con came back in the room she was very upset and said to Anthony let’s go, my clothes are in that closet and my shoes over there I want to go home now. Anthony told her she needed to stay there and mom started to say things she didn’t mean and even apologized later for saying what she did. They called Kathy and Kathy went there to stay with mom at least until she falls asleep. Ava and Anthony will go tomorrow night and Claudia will stay Saturday night. Anthony said he will stay Sunday night. We are all going to have to take the “Night Shift” until she no longer has to wear the mitts.
Please pray for peace and relaxation for mom.
~Kathy
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