When I arrived at mom’s this morning, she looked up and thanked me for coming and then began to bark out orders!! Hahaha! Her breakfast had just arrived. I set her up and she cried and cried that she doesn’t want to be in the facility any more and that she wants to go home. I told her we could start a count down of the days now! Once she settled down, she began to eat. She called Claudia and, when Claudia asked how mom was, Mom’s reply was: “How am I? Well, physically I’m fine. Mentally, I’m pretty down.” WOW! How great is it that she can articulate her feelings.
Mom enjoys eating her Fiber One cereal…so I let her take her time with it. I also allow her to have a few small bowlfuls so that she is energized and ready for the day. While she ate, I straightened her room. I threw out old magazines and newspapers first. As I did this, mom kept asking in an annoyed tone, “What are you throwing away? Tell me. Show me” and also, “Maybe dad is saving that newspaper for a reason.” I showed her each item I was throwing out so that I could wait for her approval to do so first! She is too much!
We have decided to leave everything in mom’s room until she goes home. The day she leaves, we will pack her and the room up---we are pros at packing up now! It takes us no time at all to do it. The idea behind leaving things as is in her room is to give mom some stability. Mom talks a lot about how she looks at everything on the walls and reads the signs…she creates cognitive games for herself based on the things on the walls (How many signs have the letter ‘e’ or how many girls are in the family…). Most of what is on the walls is there for an educational purpose. The signs all have important meaning. The pictures are there to create memories. The books on the book shelf are arranged a certain way so that mom can look at the shelf and see titles or pages that have meaning.
Mom is used to the way things are in the room and has looked at those walls and the things on them for the last 18 months. No matter what room mom has been in, we always put the pictures and signs and items in the same order on the same walls in the same places—to provide stability and security for mom. We don’t want her to sit there with nothing to look at or to feel that her surroundings are unfamiliar. This would be scary and unsettling for her.
As I cleaned up the shelves and drawers…, mom and I also did a trip down memory lane. I came across both the mitts and the social story Claudia created about having to wear them from back in the days when mom was ripping out 3tubes and climbing out of bed. Looking back now, it is very clear that what we were witnessing was a reaction to the anesthesia from the shunt surgery. It can sometimes take up to a year to get out of a person’s system. Anyway, back to the mitts and the Social Story…I showed mom the mitts and asked her if she remembered them. She didn’t. I was so amazed that she wore those mitts for 9 months and hated every second that she did but never even remembered them. Thank God.
I also found the very first Social Story Claudia made for mom about 14 months ago, the “Getting Better” story. This story, mom remembered. That amazed me too. I didn’t think she would remember the story. We read it together and, as we did, she followed all the directions in the story (“If I want to get better, I need to practice moving my left hand” and “If I want to get better, I need to move my feet”). Mom said, “I can do all this.” When I told her she couldn’t move her feet, or wiggle her toes last year, she couldn’t believe it, saying, “Really?!!!”
I found the “Serita Social Story” too and the “Choice Board” Claudia created for her as well. The “Choice Board” had pictures of the various activities and drills we would run with mom like a picture of beads, or markers, or the scissors. We would show mom the pictures and she would be able to either point to or, later, select the picture of the activity she wanted to do.
She’s come a looonnnggg way baby!!
Mom wrote in her journal next:
“Friday, Day aLter (after) hanksgiving (Thanksgiving)
Yesterday we all stayed at the fcility (facility) and we had a room to ourselves. We had a wonderful Thanksgiving day and my grandchildren and the other children were were all at the dacility (facility) and had a wonderful day. We had a room to ourselves. We played anpus? (games) and were very happy just to be with one another and come home very cullules? It was a wonderful Thanksgiving day. Just to have everybody all together. We played games and just enjoyed all being together.”
Mom had a shower next and then mom asked me to put her make up on. Then we went for a walk. I put mom’s jacket on and went to sit outside in the sun. Claudia and Terry arrived and sat with us. Shortly after that, Con, Anthony, Anthony Michael, Sammy and Dad came too. They sat outside then went up to lunch. After lunch, they went back outside and took mom for a walk around the building. Mom enjoyed that. They went back inside and hung out for a while and then they left—but mom cried really hard so they stayed until she was calm.
Dad spent the rest of the afternoon with mom and put her to bed tonight. He told me that mom did great with just him assisting her today!! But mom was too tired to do any OT or PT work when the therapists came.
“You will live in joy and peace.” Isaiah 55:12
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