You Go Girl

I was speaking with the head nurse on Sam's unit this evening, Francine, and she relayed a wonderful story to me about Sam. Apparently, yesterday at dinner time, Sam was seated with a number of the "neighbors" eating dinner in the dining room. One of the neighbors was new to the facility and was having a repeating issue, i.e. he kept repeating the same words over and over again and very loudly. After a little while, Sam, who was trying to concentrate on eating couldn't take it anymore and she picked-up her food tray, put it on her lap and rolled herself in her wheelchair over to another table. Wow! The nurse said that she and some of the other nurses there were amazed that Sam would/could do that. It showed that Sam could change her environment and was helping herself.. Francine also said that she and some of the workers wished that they could move from certain tables like Sam had done, but of course they can't because it is their job to work with the neighbors regardless of how annoying the neighbors get!

Francine said that they all said to Sam...you go girl!

The Incredibles

Saturday with Sam this weekend was pure pleasure. I noticed right away that Sam seemed very comfortable and when I commented to her about that and told her that she seemed quite calm inside and out, she said without missing a beat "that's because you're here". At lunch time, although Sam can feed herself, she usually gets distracted or tired, so I sometimes help her out if she wants/needs. This Saturday however, she took the food and asked me if I wanted some? She was trying to feed me, which was quite sweet. She also was much more awake on Saturday than I was, and after giving her a photograph book to look through, I promptly fell asleep in the chair (this is quite unusual for me). Meanwhile Sam had been paging through the book one/by one and I could tell had been really focused on the pictures. I had fallen asleep leaning on her a bit, and when I woke up about a half hour later, she just gave me a little smile as she continued to flip through the pages. It was as close to normal that we've come at the facility, knowing of course, that nothing is normal. After looking through the book of photographs, Sam said that she wanted to take some pictures. I quickly took out my digital camera and she shook her head and indicated that she wanted a real camera...you know, one with proper lenses and such. I tried to compensate by taking out a drawing pad and some crayons, as she was obviously inspired, and so she did some drawing for awhile. I was impressed with her energy. This weekend, I also noticed a nice change. Sam's repeating had slowed down a bit and gotten better. On Sunday, Sam actually had a speech class and her occupational therapist came by as well and both therapists talked with me for awhile. I was told by both of them that the tools they had given Sam to control her repeating was working and they were pleased. I asked them about the fact that she mouths things now, and no words come-out. Sometimes...like on Sunday, she did this most of the day, and it is actually very hard to understand her when she is acting this way. She also had never done this before at Park Terrace. They explained to me that it is a way they are working with her repeating issues. The speech therapists, both Amy and Meghan tell Sam to "turn off her voice" but now they see that Sam is doing it way too much, and so they are trying to have her "turn her voice back on" . I was relieved, because it is a kind of new tick, that developed, and although I tried to look at it as a sort of Zen like state for Sam, the fact is that I was a little worried about it, but now I know it is therapy. Sam does continue to have issues with eating and on Sunday, spit out most of her food. She wasn't as aware as she had been the day before, and she said she was very tired and wanted to go to bed. Therefore, right after lunch, I had the CNA's help Sam into bed, and she feel right asleep while I watched the "Incredibles" on TV. The nurse brought in another mighty nectar shake for Sam, for later, for when she awoke.

The Nectar Mighty Shake

As always when I arrived saturday morning, Sam was overwhelmed by seeing me and started crying. She was also upset because the staff were decorating the nurses station for the Holidays and a number of patients were helping out...but they were the patients who could stand/walk on their own. The first thing Sam said to me thru her tears was that she wasn't able to help them cause she can't walk. Now I know that she did actually help them decorate last week as they all talked to me about it, but it was a different type of decorating. I calmed Sam down and afterwards, we had a very peaceful and happy weekend. We listened to the Eurythmics greatest hits and sang along as best we could. At one point during the day, Sam was napping and had her eyes closed. When she opened them, she looked at me and said, "I was dreaming about you" and she was grinning ear to ear. Sam also went to the "Inner art" class and spent 1-1/2 hours painting. She worked really hard on concentrating on the work and made two paintings overall. Dahalia, the person who runs the inner art program is terrific and she placed Sam's pieces up on the wall and asked Sam to talk with her about them. She also invited the other participants to comment as well. Sam seemed very pleased. When Dahalia asked if Sam wanted to take the work and put it up in her room, she said "no...I want to put it up at home!" After the class I took Sam upstairs back to her room to rest, and when we got there, sitting on her table was a "Strawberry Nectar Mighty Shake for Sam" all labeled nicely. It made me smile, since I felt that after Sam's output in class she was pretty mightly alright. Sam was very thirsty so the mighty Sam drank the mighty shake right down. Sam said she was warm and happy.

Staying Hopeful!

Sam is adjusting now to the new facility and we had a very good weekend together. I had an hour long conference call with all of Sam's therapists on Friday and they are all working with her on the various issues, especially her speech. Sam has already won them over with her charm and great sense of humor, which everyone commented upon. When I arrived on Saturday morning there was a note in her binder from a meeting she had with the Program Director. The page long-note in someone else's handwriting, went as follows:

12-3-09- Meeting with Gerry Brooks, Program Director (bald guy). Talked about "motor perseveration" and "ideational perseveration" the problems he thinks I have. It means I get stuck doing and thinking things over and over again. He suggested that I should a) Notice when it happens and immediately b. Breathe quietly until it stops c. If that doesn't work, take a break for at least a few minutes. Make sure when you stop to breathe you're actually breathing in and out. Last thing he said was "Job#1 is staying positive and staying hopeful!" He said others have been through this, I will make it through too!

Everytime I read this note to Sam over the weekend, she smiled and I could tell it was truly meaningful for her. What a wonderful way to work with the "neighbors" as they are called at Northeast Care Center (instead of "patients"). On Saturday morning, one of the Occupational Therapists came by to work with Sam and so I observed the session. It was the first time I have seen Sam walk in awhile, and she is doing great. I know she was trying to show off for me, but show off she did! I also brought Sam a photography book to look at with her this weekend, which was the New Visions/Photography Between the World Wars- Ford Motor Company Collection at the MMA book which she absolutely loves/ed. She lit-up everytime we went through the book this weekend> It was wonderful to see her so happy and smiling so much. I asked her to explain the artwork to me as we went through the book and she tried as best she could, managing to say simple things like...this is a really good picture quality, but it was hard for her to say more. Everything I know about photography, I learned from Sam, so it was quite wonderful to go through the book with her, but I am sure it must have been extremely frustrating for her not to be able to express all that she was thinking. I did decide however that next weekend I will bring in a small bookcase for her room and start putting photography books on it for her. There was also a Harry Potter movie festival on the TV this weekend and Sam and I watched with great interest. At one point, when there was a really scary monster on the screen, I said to Sam.."Ihope you're not scared...you know, this is fictional, it is just a movie and not real at all...it is on T.V." and Sam looked at me funny and said " I'm not scared....I know that ....if I thought it was real, you'd have to put me away!"

Before I left Sunday evening, I went to clean Sam's glasses for her, while she was sitting in her room and just stepped into her bathroom for a moment. When I came out, she was no longer there. Where did she go in that short period of time.?! I looked all the way down the hall and saw that she had wheeled herself to one of the nursing stations...she had actually gone in the wrong direction (perhaps because she did not have her glasses on), as I think she wanted to be where the large screen TV and couches were, but I was delighted that she seems quite comfortable now to move herself around in such a way. The CNA's have begun to sit with her in the evenings too, so that she is not too lonely or upset, and that has improved her mood immensely. This was the first weekend in a long time that I left feeling comfortable and knowing that Sam is in very good hands.