Claudia went in to see mom and put her stuff down and went to the nurses and said "I need my mom's hearing aids and somebody needs to take off her mitts." The head nurse followed her and someone yelled into the hall and asked a respiratory therapist who the therapist was on the wing today and he named someone and laughed snidely and was admonished for it in front of Claudia. Claudia didn't know if the therapist was giving us the name of someone or if he was making fun of us and mom's situation. Claudia did mom's full physical therapy/range of motion today and also put her hands on the balls to keep them open. Claudia also put the large 10 inch ball under her knee but mom could not lift her leg. Claudia also read the "Getting Better" story with mom. Mom was very awake and alert for Claudia this morning. Claudia said that mom also opened her mouth on command for the nurse to swab her mouth out. Claudia also did the calendar with mom.
When I arrived to see mom today, I was told she was in the “dining room.” This is the room where many of the recreational activities take place—however, today there were no activities in this room. Mom was placed there along with 2 other patients because she and they are considered to be “high risk” patients who need continual monitoring (as per her CNA). I was told that mom will be moved to this room every day until around 2-4 p.m. because there will be an assigned CNA in that room watching and monitoring these patients. Being in one room makes it easier to monitor them. Mom is allowed to be in this room without the mitts on her hands…she allowed to move freely. This is the idea behind her being in this room. I am allowed to move mom back to her room while I visit (but I didn’t request that because it is complicated to move a person and her vent along with her. I was also told that, if a family member is with the person, then the person is left in the dining room and no CNA is needed. Mom is very alert right now. She is staring at me and watching what I am doing and I think she even said my name, “Kathy…” and something else but I couldn’t make out what else she said. The people in this room are not interacted with…just watched. Mom, for example, was in a Gerry chair with the head of the chair tilted back so far that all she could see (in her view) was the ceiling. She wasn’t laying flat, supine…but she was tilted way back. This is sort of torturous being in the room like this…no privacy, loud, hard to focus…but I am thinking that maybe I can help others too as they watch me work with mom. Who knows?
I showed mom my shirt (“Don’t quit 5 minutes before the miracle happens”) and asked her what it said. While she didn’t mouth anything, it did appear that she read my shirt because her eyes moved left to right, and line to line. I began to work with mom first by working on her fingers and hands. I am thinking that focusing with her eyes, and purposefully moving her fingers and hands are important places to start my work with mom….along with language of course. But I lace language learning in all we do together. I took mom’s right hand in mine but I put my left hand fist inside her curled right hand fist and then with my free right hand I modeled my command visually while using a full manual prompt to get mom to follow the command with her right hand. The first command was simply, “OPEN” and I said this and showed her this with my free right hand, while opening her own right hand with my left hand. We practiced this over and over. I want her to make the mind-hand connection again. Mom’s hands began to close and get tight as I first did this exercise, and though her hand was closing and not opening, I was happily aware that she was indeed connecting her thoughts to her hands because of the evidence of her closing her hands. Eventually mom began to loosen her hands over mine and this made it easier to manipulate her hands. We practiced this for 30 minutes, then I did mom’s full physical therapy/range of motion exercises. At one point, mom wasn’t looking at me so I started to touch my finger to her nose so that I could touch my nose then hers and repeat until I got her to focus---but the first time I went to touch her nose, she flinched away!! This is a good thing---something she didn’t do just 4 days ago. The head of respiratory and the pulmonologist came to see mom in the dining room. The pulmonologist asked mom to shake his hand, stick out her finger, and if mom knew who he was…mom stared at him and gave good eye contact, but could not complete any of his commands. He then laughed and said that mom was a “bad boy” now and had to be in the “bad boy room” and that he guessed she’d never “do that” again. Hard to hear. Mom and I did the IPAD next…ACTIONS, EAT, VEGETABLES, WEAR (these programs all show the item, name it, and spell it). I then played some music for mom (Steve Tyrell’s “Standard Time”) and Mozart Piano Concertos. I did mom’s full physical therapy again around 2:00. I tried to have mom work with the sensory balls (the ones that you squeeze) but mom just held them. She only squeezed them with a full manual, hand over hand prompt. Mom was moved back into her room at 3 p.m. and promptly fell asleep. She mouthed something to me a few times…mainly in reference to the music she was listening to.
Claudia and Lenny joined me with mom around 3:30. Mom woke for a little while when she was moved to the bed from the chair. She kissed Lenny when he asked for one. The evening CNA found a discoloration (sort of like the beginning of a bruise) just above her right ankle area. It is not a bed sore because it is not on a pressure point. The CNA called the nurse and the nurse called in the physician’s assistant. He told them how to care for the area. As mom slept, we sat with her and talked to her and rubbed her arm and placed the therapy balls under her hands to keep them stretched. I gave her a manicure and pedicure (my new trade!! Hahaha!) and she mouthed, “OW” and “Stop that!” and “Leave me alone!” (maybe this isn’t my new profession).
The attention of the staff continues to remain constant since the incident—people running to alarms and bells…patients being monitored more closely…curtain in mom’s room drawn at all times… Claudia and I got weepy around 5:30 and one of the nicest nurses came in to do care and found us crying…he asked if he should leave and we said, “No, you’re family.” We told him we were crying out of frustration of how things are now with mom compared to before and he apologized again (even though he wasn’t here that day of the incident). He gave us a pep talk and said that he is a new nurse and he has never seen another family like ours. So full of love and compassion and hope. He reminded us to read the wall and my shirt and not to “give up 5 minutes before the miracle happens.” Not that we would…but it was good to hear. So…we did her physical therapy again around 6:00 p.m.
We are still collecting all the records from both the facility and the hospital so that we can assess what happened to mom that day in December and also where she is at now. We are hoping with all the information we can provide her with the best care and develop the best plan. So far, in every direction we have turned (both medically and legally), we are getting the same information: it appears that mom was not without oxygen (based on her awake state, temporary alertless, ability to sometimes focus…) and that it appears that she is on her way back to where she was before all this happened. This is good news certainly. Claudia remembered tonight that a nurse from the hospital asked her why mom is on a feeding tube when mom can obviously swallow. She also asked if mom was ever given a swallow test. She hasn't been given one and Claudia told the nurse she didn't know why mom is still on a feeding tube. We will have to look into this.
Claudia, Mom and I watched “The Monkees” on DVD tonight! It was fun!! We tucked mom in and prayed over her and left for the night.
“Be completely humble and gentle; be patient, bearing with one another in love.” Ephesians 4:2
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