Late post from last tuesday

 I went in the evening this time. Alison was very drowsy. Her diaper was tight and twisted and digging into her skin. I fixed that but she continued to be irritable. She cried a little...the usual routine. She says the staff wants to hit her. She lifted her right leg really high in the air. That was the most movement I have seen from her since her days at South River. She was pretty subdued and tired. I find that any visits over 45 minutes completely exhaust or bore her. She did say she enjoys when Andy feeds her. I think that is the highlight of her life. I did not notice much difference since they changed her med dosage. Her mind continues to be sharp as ever!

Notes from Amy

I saw Alison on Saturday. She was very stiff. I tried to massage her arms and hands but I was hurting her. She said boxes were filling her hands. We visualized me taking out all the tiny boxes and putting them on her bed. I was eventually able to get her fingers uncurled but her arm movement remained unlimited. She is still with it. She was very concerned that her roommate hadn't been fed lunch and kept alerting the nurse to that fact. Alison is such a sweetheart! 

I will be headed back this weekend. 

A Nice Visit

Today I visited Alison for my weekly visit. It was a good time for both of us. We did full body massage. Alison had a very successful feeding session of lobster bisque and carrot juice. We laughed and watch videos and called rRenie in California. She said she had seen Mary Pat and Mina.

I will be out of town next week so will miss posting an update.

Cleared for Pleasure Feedings

When I visited Alison today, she had still not been cleared for feeding even though Reenie signed forms July 4th. We got Rachel to finish the paperwork today. Only three people are cleared to feed Alison: Rolina, Mary Pat, and me. No one from the facility will be allowed to provide Alison pleasure food. Rosalina will be trained on Monday so she can start feeding Alison then. Rolena will compare the feeding instructions I sent out on my last blog with instructions that Rachel has since left in the room in the bottom drawer of Alison's nightstand. Rachel will then also check the consistency of the strained lobster bisque I left, to make sure it is honey consistency.

As an update on visitors, Amy visited on the weekend. Merry Pat visited Tuesday. Christina's mom came to read to Alison today, Friday. And this week I went today, Friday. Next, week I will again go on Thursday. I will then be away a week.

Saturday

Anton and I visited Saturday afternoon. Rolina had already left. Alison was awake and listening to her TV. She can't see her TV but there doesn't seem like there is a better place to put it. She started the visit with a good cry.  She said she can't move and that she will never walk again. She said she isn't getting any physical therapy. I asked her if she was motivated to move on her own. She said no. She was able to move both arms and legs. One leg just a little. 

Alison said she had a great visit with Christina and the kids. She said she absolutely loves that Mina reads to her. Philip and William had visited some time recently. She is so loved!!

We gossiped and chit chatted a bit but she was very tired and ready to sleep. 

I asked her what she needs for her room. She said a clock. I will bring one next time I go, the weekend of July 18. 

Christina's Visit

I went with my mom and both kids who Alison was clearly glad to see, and I was so pleasantly surprised by how good she seemed!! Maybe it helped that I knew what to expect this time going to the facility as well, but she is in the different room (as I'm sure you know) and it seemed a bit better. She was sitting in her chair when we arrived and was SO happy and surprised. Even though she couldn't talk much, it was much clearer than when I was there in January. She was coherent and told me that she understands everything we are saying but just can't talk much. She even made a little Alison joke at one point that made me laugh. Rolina (?) was just leaving as we were coming and seemed sweet. 

About ten minutes in Alison said that she needed a new diaper and about twenty in she was getting tired and wanted to be put into her bed. I told nurses but they were delivering lunch so I'm not sure when all of that happened. I massaged her legs for a while and chatted about different things. Really, it was such a relief to see her like this and to hear her talking clearly. A relief and sad all at once since I'm sure that just makes it all the more frustrating to her to just be locked in her head. She said that it's very frustrating that she can't walk and that she hopes when she visits in my dreams that she can (which she always can.) Overall it was a great visit. I plan on going back at least either Monday or Tuesday, but will do both if possible. 

My mom also has been visiting once a week and reading Marley and Me to her which she seems to love (she mentioned it today). She lets my mom know that although she's going to close her eyes she is listening and paying attention, and will smile and laugh sometimes at things she reads. It seems to be a great weekly thing for her to get to enjoy. Has anyone ever tried reading other things with her, or maybe even get her books on CD? 

Rules for Feeding Alison

Rachael Gordon, the speach therapist, is moving forward with the paperwork to approve Alison again for pleasure feedings. =>> Reenie will tell us when this gets approved. Before that, we cannot feed her.

There is some risk as Alison is inconsistent with how well she swallows every day. Therefore, Rachael has asked that we follow the following rules:
• Only persons trained by Rachael are allowed to feed her (so far me, Mary Pat and Rolina next Monday).
• Only 4 ounces maximum per feeding session.
• Have the head of Alison’s bed raised up as far as it goes.
• Feed half spoonfuls only, and make sure Alison swallows twice after each spoonful.
• Clear any amount of extra liquid that gathers inside her lower lip with a napkin.
• Alison needs to remain sitting up in the bed or chair for 20 minutes after feeding.

Here is info on when it is OK to continue feeding her and when we have to STOP the feeding.
• If she coughs and it is productive, continue with feeding.
• If she says she has trouble breathing, stop feeding.
• Maybe restart if she clears her breathing but do not continue if she still has trouble breathing.
• Nonproductive coughing, nonproductive throat clearing, and a wet voice are all bad. Stop feeding.
• If there is any tearing from her eyes, stop.

Alison can only consume thick pureed items, of honey consistency.
• We need to strain the lobster bisque so there are no bits in it.
• Coffee yogurt is great.
• Carrot juice will need to be thickened with the powder (nursing desk is getting a can for our use).

I have left yogurt and carrot juice at the nursing station if Alison gets ok’s before next Thursday. I will bring strained lobster bisque in a week.