When I arrived this morning, Mom was already sitting up in bed, surrounded by 3 CNAs. They were setting up her breakfast and were relieved to see me arrive to help her. She had her new “healthy” breakfast this morning that we requested---scrambled eggs, turkey slices, and farina. She ate the scrambled eggs, most of the turkey and some farina that was mixed with applesauce and cinnamon. Mom and dad talked on the phone during breakfast as they do each morning as well. I straightened her room as she ate. I try not to talk to her much while she eats so that she can both concentrate and avoid choking. Mom had difficulty getting food on her fork so I showed her how to use the knife in her left hand as a scraper (I did this with hand over hand prompting).
When mom finished eating, I asked her what month it was and she immediately replied, “September, why? Why wouldn’t I know that?” She also figured out that since yesterday was the 1st today is the 2nd but she didn’t remember the year (though she was able to look at the calendar to determine the year). Mom’s CNA came to give her a shower right after breakfast. The CNA was putting socks on mom’s feet so she wouldn’t slip on the sorita and mom asked why she needed socks if she was going into the shower? Good question!! When mom was on the phone with Claudia, Claudia told her that today was her shower day and mom said, “Oh, it’s Friday?” These are wonderful accomplishments because they show how mom’s memory is improving. Mom used the new lift (the sorita) before her shower. I was able to stand in the room while she was placed in it so now I know how it works. Mom had asked to go to the bathroom and had to wait 45 minutes to get there---short staffed. Mom kept saying she couldn’t use the sorita and didn’t know how but I kept telling her to stop saying that and to think positively. I became stern with her at one point in order to encourage her to use the lift successfully—mom was always this way with us so I thought I’d try it on her. I told her to look me in the eye and said, “You CAN do this!!” As she screamed back at me (yes, she raised her voice to a yell), she stood up perfectly straight!!! She smiled at me and we shared a moment of accomplishment together. It appears that mom’s first response to things is, “I can’t do it” or “It’s too hard” or “I don’t remember” or “I don’t know.” We don’t accept these answers. We encourage her to try…sometimes we verbally prompt her with a hint or a verbal cue but mostly we tell her to try and then give it a minute or two to get to the answer or task.
Though mom’s stoma (the hole in her neck where the trach once was) is closing, she still speaks in a whisper at best. There is no reason for this. Sometimes, covering her stoma helps to raise her volume, while other times, a simple verbal cue to speak louder works well. I am wondering if voice lessons like those you would have for singing instruction would help her. Mom frequently complains that the middle finger on her left hand is “frozen” and that she can’t move her hand well. I keep telling her that, if she practices, she will be able to use it again.
After her shower, I did mom’s hair and she asked me to put her make up on. I told her we would go for a walk to the computer room. We talked and laughed and then went to look for a nurse so we could get a bandage for her stoma. The nurse had no bandages yesterday or today. The nurse was going to put some gauze and tape on mom’s neck but I said we would find a bandage downstairs.
Mom and I went downstairs then to visit the people on the old respiratory unit where she once was. Though that wing is full of patients who are lifeless, the wing and hallways down there are so full of life from the workers there. Oddly enough, it is a happy place to be. While we were there, mom’s old nurse greeted us both with a hug and kiss and covered mom’s stoma with a bandage (we even received an extra bandage for tomorrow). The nurses and aides and cleaning people and respiratory therapists gathered around us and greeted mom. Mom talked to them all and smiled and laughed and joked. Everyone is amazed at her progress. There is a respiratory therapist who continually asks mom who she is and her name rhymes with the word respiratory. Mom can never remember her name or the rhyme. Today, mom remembered the rhyme!!! Mom also told one person that we were on the way to the computer room!!!! I had mentioned going there over 40 minutes earlier and she remembered!! This is great progress because her short term memory is lacking so much. She is beginning to remember more and more on a short term basis. One of the therapists asked mom if she would cook a dinner for them all once she was home and mom said, “Oh I don’t know about that, maybe I’ll cater it!!”
We left and headed for the computer room when we saw Anthony and Anthony Michael and Sammy arriving. We asked mom if she wanted the computer room or to go outside. She chose outside so we all went outside and sat and talked and laughed. Anthony immediately began to work on mom’s legs asking her to raise her bent knees up and down in a bicycle motion. Mom complained but she did it. Sammy asked mom what she ate for breakfast and mom remembered that she ate eggs!!!!!!! Big progress with the short term memory. She also remembered the turkey after I said she ate a meat as well. Jo Ann is here and vowed to God last summer that, if mom lived through all this and came home, Jo Ann would go on a major diet and lose a lot of weight. True to her vow, Jo Ann is preparing to meet this goal. Mom called Jo Ann today and told her, “Hey, you better go to Friendlys now because I am walking today!!” While we all talked, it came up that dad now hired a cleaning person and mom said, “What? Where? At my house?!!” Anthony Michael said, “Yeah Nonny you need to get home so you can clean and cook for us.” Mom’s reply with a shrewd grin was, “Maybe I don’t want to go home after all….” She does want to go home badly, she was only joking. One of mom’s old CNAs from last summer saw mom as we sat outside and mom smiled at her broadly and said, “Oh, I know you!!” then she apologized for not remembering the aide’s name. At one point outside, mom asked, “Is this a place for old people to come to die?” and she smiled. We told her it is a place where people come who can’t breathe on their own, and a place for rehabilitation and a place where old people come and that she is in the part for rehabilitation and coming home.
Dad came next to be with mom. Dad said that mom cried last night when he left to go home. She really wants to come home. Dad said he thought she only had PT today and not speech or OT. They had lunch and then dad had mom push herself in the wheelchair around the halls upstairs. They also watched TV and talked. Mom kept telling dad that she wanted to come home over and over again for about an hour this afternoon. She misses us all but mostly she misses dad.
Jo Ann and I came to put mom to bed tonight. Mom and dad were watching TV and mom was reading the newspaper. Dinner came and mom ate ½ of the food (they give huge amounts!)—chicken marsala, mashed potatoes, waxed beans and chocolate diet ice cream for dessert. After dinner, she wanted to read the paper again so we sat and read together (she read the newspaper, Jo Ann read some magazines and I wrote the notes for this email). We talked and then somehow I ended up showing mom the thank you letters I wrote to the respiratory unit staff and she loved them. She kept saying, “Wow, this is beautiful.” She also complained that it was difficult to see with her glasses, she said, “These aren’t my glasses.” We need to get her eyes checked. It took mom well over an hour to read the letters and study them carefully.
I gave mom the dry erase board and the markers. I had mom write her name and she did so copying what I wrote. I wrote in upper and lower case letters and she wrote in only upper case. Next, I told mom we were going to play “school.” Mom LOVED to play school when she was little and when we were little. I told mom we would play, “Spelling Test.” I gave her the dry erase board and a marker and then I recited some words for her to write and spell. I asked her to write the number 1 and she did (she wrote the numbers 1-6 and couldn’t remember 7 at all but wrote 8-10). Then, I said the words one at a time: Dog (DOG), cat (DAT), bird (BIRD), Pastafazoli (Pastavasool), Kathy (Dathy), Pig (PIG), paper (PAPER), cup (CUP), bacala (BAGALA), finger (FINGER). She did great!
Mom used the sorita very successfully again before bed and then was changed for bed. Jo Ann and I turned on the TV and then prayed with her and left. After we prayed, mom kissed me and squeezed me tightly and thanked me for all I do for her and said, "I am so thankful to have you in my life." What a gift.
Please pray for restoration and rest and peace and continued determination for our family as we are becoming increasingly tired out and exhausted. Mom’s progress amazes everyone. We wait in patient anticipation for her to return home.
“And so, after waiting patiently, Abraham received what was promised.” Hebrews 6:15
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