Mom’s Update July 16, 2011
I started the day with mom after being with her until 11:30 last night. Ava and Anthony Michael were going to stay with mom but Ava was called to work at 7am and had to leave at 7am so I thought she needed her sleep. We all have been with mom late this past week. She is very anxious and unsettled. Nighttime is difficult. She can’t fall asleep and she gets very upset and anxious when we have to put the mitts on. She also has been experiencing some gastrointestinal and bowel issues right before bed which also makes it hard to relax and drift off to sleep. I came in and she was already in the wheel chair, showered and dressed for the day. I spoke to the nurse and she said she was very anxious and confused this morning so she got her ready early. She thought that once she was in the chair and her routine began she might be more lucid. I came in and said, “Good Morning morning glory!” She said good morning back. I moved her into the lounge so we would have more room to work. I brought my summer school work with me so I could plan for next week. I set mom up with the pegs and the rings. She didn’t know what to do and kept asking me what I wanted her to do. I tried some restraint therapy, which is holding her good hand and having her do the task with her affected arm. She kept trying to move the good arm and hand. I had to explain to her to put her mind on her left arm and hand. I also stroked her affected hand to let her know where her mind had to be. She eventually put 3 rings on the pegs with her affected arm and hand. It took a lot of thought and concentration. I then gave her five yellow paper clips and a yellow card. I wrote on the ipad (black board app) “Put the paperclips on the card.” Mom kept trying to put the clips on the ipad. She read the phrase over and over and over but couldn’t figure out what to do. Something wasn’t right. This wasn’t that difficult. I couldn’t figure out what was wrong. It took a long time for her to process the information and perform the task. Anthony and Con came and I showed them how to do restraint therapy. Anthony held her right hand and gave her the buttons and the container. Mom was able to put the buttons in the container with her affected hand. I then gave Anthony a book I bought that has photo realistic pictures of patterns (squirrel, nut, squirrel…) The object is to see what comes next. There were simplistic ABAB patterns and more complex. Mom was able to do all of the patterns. The brain is so weird! Con and Anthony took mom outside and I had to leave. I spoke to Kathy and she wondered if mom had a UTI? Kathy called the nurses station later in the day and asked if this were a possibility and could they send out a specimen.
Getting back to Anthony and Con’s visit…they stayed in the lounge with mom working on putting the buttons in the cup. They then went out in the courtyard under the umbrellas. They tried to get her to play cards but she didn’t want to. Mom said, “It’s lonely out here.” Con said, “Do you want to go out front by the people?” she said yes so they went out front to watch the people come in and out. They talked and laughed. She fell asleep for a while and then Dad came to see her. She stayed asleep until they left. While they were outside Anthony Michael called and mom had a conversation with him and she was very loud. Anthony said other than that conversation she was very quiet when she spoke to them.
When I came back, (to put mom to bed) Terry was with mom. They were sitting together watching TV and talking. Terry told me that they put a catheter in mom and that I should go to the nurses station to ask about it. I was told that they put a catheter in and mom had a lot of urine in the bladder (400cc’s? I can’t remember the exact number but it was a lot) She has not wanted to go to the bathroom because the more aware she is and the more she is recovering she is embarrassed to go. She wants to get up and walk into the bathroom (she can’t walk yet). There is a strong possibility that she has a UTI. I just hope that this doesn’t delay her getting decanulated. I sat with mom and continued doing my panning and work for summer school. Mom was very restless and constantly asked if she could “cut” things. She would lift up her blanket and say give me a cutter, I want to cut this. She said the same thing about the pulse-ox on her finger. She would ask every 2-3 minutes. I kept telling what each item was and why we couldn’t cut it. It was maddening! At one point I just laughed and couldn’t stop because I was exhausted and at my wits end. I shut the lights and played soft music (sleep CD) and just sat with her. She experienced bowel issues again and the nurse came in to try to help her. She ke[t trying to get out of the bed to go to the bathroom. Nighttime is so hard. The reason we stay so late with her is that we are so close to her getting decanulated and we were so close before (December) and then she was decanulated by accident and her lung collapsed and she was in the hospital. I remember being in the emergency room and seeing mom and thinking, I don't know if I can do this again! We all just want her to make it to the point where we won’t have to put mitts on her and she can make improvements to eventually go home. Going home is actually a reality now!Although, there is so much to be done with her skill level before she can go home. She will need extensive therapy so she can get off the feeding tube and walk to the bathroom to name a few. We need to keep her safe until then. It is so late and I am so tired, i don't even know if I am making any sense. Goodnight!
Please pray that the possible infection won't hold up her decanulation procedure on Monday. Oh yea, and also pray for peace and calm at night.
Love to all,
~Claud
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