Claudia began the day with mom and she was wide awake, alert and talking. Mom was very upset that she can’t go to the bathroom to do her business. Mom told Claudia that she was in pain and pointed to the area. Claudia asked if her neck hurt, mom said no, she asked if her head hurt, mom said, no. then, mom showed Claudia where it hurt on Claudia so going by the spot, Claudia said, “your clavicle hurts?” Mom said,”Yes, I guess so that’s what you call it.” Claudia asked if mom wanted Tylenol and mom asked why so Claudia said for the pain, so mom made a face and said, “OK.” Mom was scrunched down in the bed and asked Claudia to sit her up because, “I’m leaning.” Claudia told mom she has a routine that she does with mom each morning so that Claudia doesn’t forget to do anything. Mom was amazed by this and questioned Claudia about the routine. Mom also told Claudia that her head hurt as well, so Claudia pointed to the area of the surgery and mom said, “Yes.” Claudia put mom’s bed down flat to straighten mom and mom said, “I’m afraid” because the bed was flat. Claudia asked her why and mom said, “I don’t like being down.” So Claudia reassured her and straightened her. Mom told Claudia how to lift the bed and to what point. Mom told one of the aides to “Shut up” but obviously didn’t know what she was saying because mom got very upset when she heard that she said that to the CNA and said, “I would never say that!” Mom was able to tell the respiratory person that she needed to be cleaned around the trach and stoma and that she was all wet. Mom’s neck patch for coughing was off. The nurse came in and replaced it but it takes almost an hour to kick in and mom to stop coughing. The respiratory person came back in and mom asked who the person was and told Claudia to tell the person to change her clothes. At one point, mom tried to blow on her hand but couldn’t feel her breath so she became very upset. Claudia had to explain to mom that she is breathing through her stoma/trach collar not her mouth. Mom understood and then relaxed. She told the respiratory person to stay with her because she was coughing so much. Mom also read everyone’s badges today. The head of respiratory asked how she is doing with physical therapy and mom said, “I guess I am doing OK.” The therapist gets a kick out of mom and enjoys her a lot. This head person told us that mom’s head and soft spot has to be handled carefully. There is no skull at the site of the shunt. That piece of the skull is in mom’s abdomen now for safe keeping.
I talked to mom a lot this morning. She said she dreams. Mom said that she dreamt about her bedroom at home last night. She also said she felt nervous this morning. I asked about what and then we were interrupted. We talked about how she had been sick for a while and now she is getting better. We talked about last Memorial Day (2010), I asked her if she remembered going upstate with dad and us and then picking up aunt sophie…she said, "Yes, sort of." I am trying to reconstruct what happened to her slowly. My reason for doing this is to follow her lead but to also help her to understand the tasks before her and their importance. Also, mom is confused a lot about the hype around her regarding simple things she does. She also becomes annoyed with our attempts to help her as well. She doesn't understand that there is much to relearn. I am not saying that we want to overwhelm her or to depress or discourage her at all. But we do know that in order for mom to progress, she needs to understand to some degree what happened to her and why. Each day, mom is more and more aware of her surroundings, it seems that it will only be a matter of time now before she asks what happened and wonders when she will be going home. I told mom Maureen, her friend, emailed me about her and mom said “Awww…” in a grateful voice and facial expression. I also told her that her friends come to see her often and that Maureen comes once a week to see her. Mom almost cried at that and said, "She doesn't have to do that." This comment is vintage mom! Mom was surprised and happy to see me. She said she knows and remembers me visiting her every day. She was flicking through her magazine with her mitts on her hands as we talked at first. The trach collar bothers her and she scratches underneath it and also moves it to a new, more comfortable position sometimes.
Mom was very afraid to be in the hoyer (the lift machine that puts the patient in a sling and swings the patient up out of bed suspended in the air and then down into a chair and vice versa) this morning. She is suddenly aware of things as though she is experiencing them for the first time. As mom becomes more aware each day, she needs to understand, to some degree, what happened to her. This is important because mom is now able to become an active participant in her own recovery. Over the past year, we have been imposing therapies on mom…she was not an active participant. The therapies were important but mom didn't and couldn't really participate consistently in them. Now, mom may not only participate but also perhaps direct her therapies according to her own individual preferences. The lens on mom's recovery shifts yet again now...we now have an entire psychological piece to mom to deal with that wasn't there before. A new level of consciousness and awareness.
The physical therapist works with mom every day. The therapist comes sometimes twice a day to be sure that mom is awake and ready to work. Had her at the standing table last week already. Mom stood for 5 minutes twice. The therapist tried the band under mom's feet but mom did not do great with that at all. When she was asked to move her legs she did not do great either. This new physical therapist is great and won’t give up.
Mom went to physical therapy but Anthony couldn’t go with her. When he returned, mom was in her wheelchair reading a magazine. He told her Sam went on a roller coaster today and mom said, “I hope she’ll be OK!” they talked a lot and held hands. She read a lot and didn’t want to watch TV even though Anthony asked her what she wanted to watch (mom said, “Put on what you want”).
The speech therapist continues to come see mom to give her snack foods. However, mom aspirated on liquid that was honey consistency yesterday so no more liquid for a while. Mom had pudding today and appears to have aspirated as well so the therapist is going to discontinue oral feeding for a while.
When I came back to see mom this afternoon, I ran into the recreation therapist who was thrilled at mom’s progress. Mom went to the recreation room and the therapist read the newspaper to the residents among other things. Dad went with mom there. The therapist said that mom winked at her and smiled and that it made the therapist’s day. When I saw mom, she was watching TV with dad and reading a magazine. She was engrossed in the magazine. I said hi and she smiled. I asked her what she wanted to do and she made an annoyed face and gesture and said, “Leave me alone for a few seconds and let me sit!” So….we sat and talked and watched TV for a while. After a bit, I took out the white board and markers. Mom made a circular motion and also traced a huge letter ‘D’ with her fingers but not with the markers. We did a counting sheet (one-to-one correspondence) involving the numbers 1-5. There were rows of objects to count along with a coinciding number to match it to. Mom named the numbers 1,2, and 5 but didn’t know the number 4 at all and was astonished when I told her the name of the number. She also said that ‘3’ was ‘2.’ She really couldn’t complete the sheet alone or even with a lot of assistance. She counted some of the objects with me and found most of the numbers but couldn’t draw the line from a number to the objects. I tried a block game where you have to make words using the letters on the blocks---she wasn’t interested. She really just wanted to hold dad’s hand and watch TV and flip through the magazine as she read it. She reads really well. She talked a lot though it wasn’t always easy to understand what she was saying. At one point, dad changed the channel and mom complained. It seems that as she gets tired, she becomes confused. Mom complained of a head ache again late in the afternoon.
Anthony Michael and Con came to see mom tonight and dad and I left. They sang songs and watched TV. Mom said a lot to Con but Con and Anthony Michael couldn’t understand a lot of what mom said. Mom was very alert. After mom was put to bed, Con got mom ready for bed and put the timer on the TV. Anthony Michael and Con prayed over mom and left.
"He Who began a good work will be faithful to complete it." Philippians 1:6
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