When I arrived this morning, mom was sitting in bed (though mom couldn’t reach her food well). Mom looked so cute though because someone (I suppose her CNA) gave her the full box of Fiber One cereal and the phone, as well as her typical breakfast on the tray. Mom was sitting in bed covered in some of the cereal—she had the bag of cereal in her hand and had tried to pour it into the bowl but got some all over the place as well. She wasn’t upset, she laughed and asked me to help her.
Mom’s roommate said she had French Toast for breakfast and mom’s eyes lit up widely and mom said, “Hey!! Who does she know?!!! How come I can’t get French Toast?” I told her we want her to have protein for breakfast and mom made a mocking face at me.
Mom said she was very confused today. She said, “I’m so confused today. Where am I again?” I asked her where she thought she was and she said, “I think I’m in Brooklyn, right?” Then mom thought that dad slept here too but in another room. She may have been sleepy—it was early and she had woke up not long before, maybe that’s why she was confused. She also said she had many dreams last night. I guess one of the good things about this is that mom is able to both articulate how she feels and also to distinguish that she is confused.
I told mom that one of her childhood friends lost her husband this week. Mom remembered his name and said, “Boy, he used to rib my father good!!” She said she couldn’t believe he was gone and that she felt she should go to the wake and funeral. I told her we could send a nice letter and call her friend later.
Mom asked for Claudia and asked where she was working today. Mom wanted to know if Claudia is with the same students every day. Mom asked for dad too. We watched the Regis show this morning. Mom said it is his last one. She also said, “I remember years ago when he was just like a second banana. I think he began with Jack Parr.” Mom watched and commented appropriately.
Claudia and I are going to prepare a “Home” book for mom. We are going to take pictures of every room in her house and also of the yard so that we can help mom remember home. It is quite possible that, once mom gets home, she may not remember it and be disoriented or even uncomfortable being there. Hopefully, based on how she has been progressing, this won’t happen.
John and Con’s cousin came to see mom this morning. Mom was thrilled to see him!!! She exclaimed his name excitedly and then promptly told me to cover her up because he was in the room (we were preparing to get out of bed to go to the bathroom). Mom talked to him and then I caught him up on mom’s progress…as mom either listened and commented or said, “I can’t hear what anybody’s saying!!” over and over. She still has the “auditory jumbling” going on where, when there is a conversation in the room around her, she can’t focus or filter out all the words in a way that she understands. You need to speak slowly and one person at a time in order for her to be able to follow the conversation. The jumbling that goes on auditorily creates a situation where all the words become background sounds with equal volume to all the other sounds in the environment. When we listen to someone speak, we are able to focus on his/her words while we filter out all other sounds in the environment. Mom can’t do that yet. To her, all the sounds are the same and are unable to stand out one from another. So conversational talking becomes a lot of noise and nothing else to mom. She can’t filter out or isolate just the sounds that make words from things like the TV or two people talking or someone talking in the hallway or the hum of a car engine outside or whatever. All the sounds sound the same and make the same level of volume. Hopefully, this ability to filter sound in a group will evolve back to normal soon.
Mom went to the shower while John’s cousin and I talked. He told me he would make copies of some high level speech/language related tasks for us to do with mom. He is also amazed and pleased with her progress. He couldn’t believe that mom isn’t on any medication any more!! She amazes us all.
When mom finished her shower, it was just me, mom and her new aide in the room. This aide had mom once or twice in the old respiratory wing where mom once was. The CNA said that we all (our family) should know that mom’s recovery is due to all that her family has done for her, young and old. The CNA wanted us to know that mom’s recovery is a miracle and that the CNA can’t get over mom’s progress. The CNA remembers mom on a vent and in a coma!
Anthony came next and immediately began to work on mom’s legs. He tried to get her to stand. Mom stood up but not really straight about 5 times…to a count of 81, 40, 30, 18, and I think 20. She loves to laugh with Anthony and tease him and he her. Mom’s roommate has a purple shaggy blanket on the bed. Mom asked Anthony what kind of blanket it was and Anthony said, “She skinned Grover!!” Mom went hysterical!!!
The facility Social Worker found me to say that the nurse from the Department of Social Services was coming TODAY and not Monday as planned. I phoned Claudia and Dad. Dad was on his way and Claudia came right over too.
While we waited and before lunch, I played a game with mom that I made up called, “The Home Game.” In preparation for mom’s homecoming, I asked her questions about her house.
“Do you go in the back or the front door at your house?” Mom said, “Back” (Correct)
“What room do you walk into?” Mom said, “My kitchen?” I said, “No…” Mom said, “My dining room? That’s silly!” (Correct)
“What’s in your dining room?” Mom said, “All dad’s junk!” (Correct!!) Then mom said, “It looks like Katherine and Zachary’s in West…West…” (they are mom’s mother’s cousins). Mom said, “There’s a china closet and half….uh…what do you call it?...on the right. China closet on the left and Grandma’s china closet.” (Correct)
“If you walk straight through the dining room, what’s there?” Mom said, “The living room and more of dad’s junk” (Correct) “A china closet on the right…” (Correct)
Claudia showed mom pictures of her and dad’s house next. Mom knew almost all the pictures. When Claudia showed mom a picture of their fireplace and mantle, mom said, “That’s in my house!!” and began to cry.
Mom ate lunch next and then the nurse from the D.O.S.S. came. All went well. There are many different programs available. Mom is going to get the Personal Care Aide program. This means that there is no cap on the expenses (in the Long Term, Lombardi program, there are caps so you sometimes have to prioritize needs and, as a result, not get some services, items…).
The program mom is going into has no cap. Mom will receive weekly visits from a nurse (or maybe more depending on mom’s needs). Mom will also get physical therapy (PT) at home as well. A physical therapist will come to the house to assess mom, then, based on mom’s abilities and needs, she will get a certain amount of service per week.
Mom will also get visits from a Personal Care Aide. This is different from a Home Health Aide. A Home Health Aide can legally/professionally do more like feed mom, apply creams or ointments for medicinal purposes… Mom is not getting this type of aide because this type of aide only comes with the Long Term care program. The nurse from D.O.S.S. did not feel mom needs this type of care. An aide would also be with mom for an 7 hour block of time straight like 7 a.m. through 3 p.m. This Long Term program costs less money per patient because there is a cap on the cost for services due to the fact that the premise is that the person will need the care until he or she dies.
Mom is getting the Personal Care Aide program which has no cap on services because the idea is that mom will eventually get better and better so the services, though more in cost, won’t theoretically last as long. With this program, mom gets physical therapy as needed and then she also gets visits from a nurse as needed. Mom will get a Personal Care Aide who can do things like bath her, shower her, dress her, make her bed, prepare meals… This Aide comes on whatever schedule we want. We will have the Aide from 8 a.m. through 11 a.m. and then again from 4 p.m. through 7 p.m. This way, the Aide can get mom ready for the day and then later, ready for bed. If we need more hours of service from her, we can get/could have gotten more. We can make changes to the program as needed once mom is home and any time thereafter. We can break the hours up any way we’d like or need.
It was recommended that mom get a hospital bed and not use the Temperpedic bed she has now. Medicaid pays for all the items/equipment mom needs. Medicare pays for the therapies like physical therapy. Medicaid pays for the nurse and the aide.
All in all, it can take up to 2 more weeks for mom to come home (worst case scenario) and up to 5 days in the best case scenario. We were told not to get our hopes up for her to be home for Thanksgiving because the services and availability of people next week will be sparse due to the holiday. We will have Thanksgiving at the facility with mom. We will have a 2 day notice of when mom is able to come home.
After the nurse, Anthony and Claudia left, mom and I played with the IPAD. Mom did the “Toy Story 3 Camouflage” app. This is like a hidden pictures game. You see a picture and get a written list of items to find. Mom used to LOVE doing these puzzles which motivated her now, however, she had a most difficult time with the task. She was only able to find 2 items independently. She also became frustrated and the fidgetiness began so I quickly changed activities.
Mom tried the “Super Why” app on the IPAD next. This one was so easy for her that she said, “Is this it? Are you kidding me?” I remember when she couldn’t do it at all a few months back! This app shows sentences and you find the missing word, or words and you find the missing letters.
Mom zipped through an app on FUNCTIONS next: “Show me the one that cleans the carpet” or “Touch the one that has four legs” or “Show me the one you sleep on.” A word jumble app followed. Mom LOVES words and word jumbles!! She zipped through this too!!! She unscrambled words like “Together, seven, full, try, light, today…” She lasted a long time with this app and loved it.
Mom did the “Inference Sentences” app next. It says aloud things like, “When your hair is a mess, use me to look your best. What am I?” (Mom: “Comb”). Mom did really great with these and zipped through them all saying, “This is too easy!”
We tried the Baseball Facts app which involves multiplication facts from 1-12 but it was too difficult for mom to do. She also tried the “tangrams” app and did well identifying where the pieces go but had difficulty getting the pieces to stay where they belong. Another app we tried was a puzzle one---you see the outline of a shape and the marked puzzle spots and then you move the pieces into the right place. This, too, was too hard for mom.
She became tired and asked me if there were any books to listen to. I showed her the titles and she selected, “The Hiding Place” by Corrie Ten Boom. However, she tired of listening easily (I forgot the headphones so it was hard for her to filter the sound). She asked for a movie next and selected, “Doubt.” Mom kept saying that she was supposed to play Meryl Streep’s part at the Playhouse (she was supposed to). She sat and watched the whole movie on the IPAD using headphones. I don’t think I ever saw her concentrate so much on a movie!!! EVER!
Mom’s friend, Maureen, called and she and mom had a nice conversation. When Maureen asked mom if she is doing better with walking, mom said, “No, not really--walking is still precarious.” What an answer!!! Mom told us that Maureen is going to be traveling soon and told us where she was going too!
Mom continued to watch, “Doubt” and I left to go cook dinner around 5:30. It was good to be together with family today and be with mom and dad for the day.
Mom talked on the phone with Lenny tonight. He was on his way to a play at school. Mom also signed a card for Ava’s birthday which will be on Sunday.
Mom will soon be home……unbelievable.
“One more thing--please prepare a…room for me, for I am hoping that God will answer your prayers and let me return to you soon.”Philemon 1:22
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