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.

She's My Girlfriend

It has been close to two weeks now that Sam has been in the new facility and there have been a lot of ups and downs. It has been hard for me to be away from Sam during the week and so I can't imagine how difficult it has been for her. We miss each other terribly, but for Sam it seems to be manifesting itself in her refusing to eat and crying a bit on/off. The staff did a full swallowing evaluation, and Sam does not have any issues with swallowing...which means the refusal to eat, is a more psychological problem. They are following up with her doctors and are already supplementing her food during the day . They had also asked me to give them a list of her favorite foods, etc. With this said however, Sam looks great and is eating a bit. Yesterday, for Thanksgiving day, I arrived with fresh cut strawberries, mozzarella sticks and pumpkin pie (a special treat from our friend Sian). Sam ate everything that morning and then proceeded to eat the entire Thanksgiving day meal...which even I thought was a lot. The CNA's were shocked...I told them just to continue to give Sam a Thanksgiving day meal every day and she will be just fine. The good thing is that the people at NE Center are terrific and they approached me with this problem moments before I approached them. They are really on top of things and are proactive which is a very different scenario from where she was before. The other problem at NECenter is that Sam has already fallen twice...once out of bed (she said she was just trying to shift her position to get more comfortable), and once in the dining hall, when she undid her seat belt...yes Sam is still alarmed, but they are much less restrictive here which means more possibilities for falls. Again, they are watching Sam, but that is actually my biggest worry for her at the moment. Fortunately she was not injured in the past two falls.

The good news is that the therapists and nurses and doctors are excellent and Sam is very happy overall with her classes. They know she is a photographer and have already incorporated that into her "homework " assignments.....Sam is to list camera parts and equipment. Yesterday she asked me to bring in some art books for her, which is the first time ever she has made such a request. That is a good sign. She also was so very happy to see me on Thursday morning...she couldn't stop kissing me at first and then just had a beaming smile all day long. She went around telling all the nurses and the CNA's that I was her girlfriend. She was very proud and we had a great day together.

Transition Period/Send Cards!

The move from Park Terrace to Northeast Center for Special Care went well on Monday. It was a beautiful day for a ride and so I packed up all that had accumulated in Sam's room...and we said goodbye to everyone who had cared for her at Park Terrace. Sam seemed excited for a change and when we got to Northeast Center and into her new room, she was really happy. She did a thumbs up for me about the place and then we slowly began to meet the team that will be working with Sam over the next few months to come. Over the course of about two hours, about twenty different people came in to say hello to us and to begin evaluating Sam. It will be a two week evaluation period before Sam's schedule is finally set and they lay out the short-term and long-term goals with me. It was also nice on Monday to reconnect with Bill and Joan, and their son Joe who is staying at the Center. They brought Sam a wonderful welcoming gift that I've put-up on her wall... a poster that I think Bill Clinton's campaign used, of a working woman with her arm flexed saying something like we can do it...or let's get to work (I'm forgetting the exact saying at the moment). When I left Sam late on Monday night, she seemed quite happy. However, this evening when I called to find out how her day went, I was told that she was crying a lot during the day...this of course upset me a great deal, as I can not easily run out (its a two hour drive) to see her and to comfort her. However I talked with her on the phone and she seemed to be okay. It is certainly a transition period for Sam, as she has only known Park Terrace since she has become "aware". I'm sure she is scared of her new surroundings and all of the new people. Their approach is almost completely opposite of what Park Terrace and most nursing/rehab. facilities offer. I called back again this evening and it seems like Sam calmed down a bit. I spoke at length with the nurse on duty and she explained that Sam has to find her own way around (I myself was confused on Monday at the Center and got lost a number of times just walking around the facility..I can't imagine how Sam is managing). They are all about having the individuals make their own choices, which eventually helps them to become more independent. For example, tonight the nurse was not sure where Sam was...and I said "what are you talking about" and she said well they allow all the patients to wander as they please to the various locations on both floors. Apparently Sam followed the medication nurse around for awhile but has not gone to far astray. The nurse looked around for me and said that she saw Sam in the main room with the big screen TV. Apparently the "Neighbors" (that is what they call all of the patients at NEcare Center) need to maneuver themselves around...what a challenge for Sam, who has not done that at all at Park Terrace and has had everything planned for her and people to push her wheelchair everywhere she needs to go. What a change to have to make up your own mind about things, find your way around and push yourself...no wonder why Sam was crying today! I know deep down that this is a good thing, and that is why I wanted her to be NE Center..they are progressive and have great results, but the transition period must be hell for Sam.

I would ask that anyone reading this blog, to please send Sam a card or some words to make her feel welcome in her new surroundings....I think she is going to need all the extra support right now. The new address for sending cards is:

Attn: Sandra (SAM) Morris, Room # 2-430, NorthEast Center for Special Care, 300 Grant Avenue, Lake Katrine, New York 12449

Just Hanging Out

This weekend marked the one year anniversary of Sam's catastrophic event. I've tried to look at it as just another weekend, but it is a time marker and was certainly an emotional one for me. Sam however has made amazing progress over the last year and I hope and pray that she will continue to do so. I will be moving her tomorrow to a new facility called Northeast Center for Special Care in Kingston, New York. They are supposed to be progressive in their approach to therapy and they focus on healing through the arts. Sam will be kept busy all day and her therapy will be integrated throughout. There is also a beautiful glass enclosed art studio and separate music studio. Art work is up everywhere you look and they call themselves the anti-nursing home. I tired to prepare Sam this weekend for the transition and she seemed to be okay with it. Sam was definitely doing well this weekend, and when I asked her what she wanted to do on Saturday, she just said, "hang out with you." If it wasn't for her repeating the same words over and over again, I would say she is doing well. Over the nine months Sam has been at Park Terrace, I have made some very close friends and connections to people there. It is hard to say good bye to them, since you have such an understanding of what you are each going through, seeing each other care for your loved ones day in and day out and understanding all the set-backs that have occurred for all of us over the course of the nine months. I will be staying in touch with a number of people for whom I've become especially close but it was still hard to pack-up Sam's things tonight and say goodbye. The journey continues.

Love

Sam's awareness level has definitely improved overall and the report from Jenny at Park Terrace this past week also confirmed that she is at the best she has been, in terms of awareness. On Friday evening she said the most wonderful, loving words to me before we said goodnight to each other. I told her that I was going to take her home for the weekend and that her friends would visit, and she said, "no- just you me and the cats" and then smiled at me. That is our definition of home, so I was very touched by her words. She also asked that I take care of myself and to get home safely. She said she wants to protect me. This weekend when she was home, she was doing quite well on Saturday, both physically and mentally. Wendy and Aileen helped Sam walk around the house for about 5-10 minutes and that was just great. She also joked a lot with us and in general was very alert. On Sunday, I made sure it was just me, Sam and the cats.

Awareness

Tonight although Sam seemed very tired and kind of out of it when I arrived at Park Terrace, she turned to me when we were in her room and quietly said, "I'm sorry this happened to me". I told her I was very sorry this happened to her as well and that she must be sad/and or mad about it all. She said she was. I assured her that she was getting better and that she would only be in Park Terrace temporarily and then she will be able to come home and be with me and the cats. She cheered up a bit, but I was amazed at her clarity. She sometimes comes out with statements that are just so vivid and clear about her situation. It is a good sign.

Sam's Poem

As I was starting to do Sam's laundry yesterday morning, I noticed a piece of paper in one of her shirt pockets. Sam is always tucking things away in her pockets, which I have always found to be a rather sweet habit. I took the paper out and on it was a printed poem. I asked Sam if she had written it, and "yes" was her answer. After reading it I knew Sam had written it, as it was definitely her language. I asked Sam's permission to reproduce her poem on this blog and she happily approved, so here it is:

Good Words

Start writing
good words.
Stop thinking
brevity.
Gold tarnishes
our berry beer.
Strawberry icecream
spills on our feet.
I think about a lot of things
in the dungeon.
Statistics don't fall away.
Gingerbread houses shelter us.
Should we pile the words?


Sam always used to write poetry and so I was thrilled to find this treasure in her pocket. I hope that she can continue to write more poems. I assume that she did this poem in her speech class and that the therapist helped her to print it out. I'll try and find out more about it this week.

Also, Sam and I had a lovely weekend together and with friends/colleagues. Many people came by on Saturday and Sunday and Sam seemed quite pleased and happy. She also had her first slice of Pizza on Saturday and she had the best smile on her face while eating it. I took a photo of her eating the pizza and when I can figure out how to download it to this blog, I will do so... it is a great picture. Later this evening, when I took Sam back to Park Terrace she refused to get out of the car. She said she did not want to go back there and that the place was terrible. I needed to talk with her for awhile and try to convince her otherwise. It was very hard for me to do so, since it is hard for me to go "back" to Park Terrace as well. Every time I visit, I need to take a deep breath before walking in, and then afterwards it is okay. Sam said she was mad at me for taking her back, but fortunately by the time we got upstairs, and Sam had greeted lots of people, she was no longer mad. It was certainly tough to leave her there tonight as it is each evening when I leave Park Terrace.

A Very Good Evening

Sam had a great night tonight. It seems that just when my spirits are flagging, Sam manages to come through with a smile or a statement that reveals a deep level of understanding and it keeps me going for another few days. When I arrived to visit Sam tonight, I spotted her immediately in the hallway as I stepped off the elevator and I waved to her from a distance. Right away you could see her recognizing me and she smiled, waved and yelled out "over here Marcie" and then I could tell she was starting to get emotional. When I reached her, she put her arms all around me and we kissed and she told me how much she had missed me. It was a wonderful welcome. When we went into her room I saw that she had received some mail from her friend Lisa and so I looked at the envelope, but it had already been opened. I asked Sam about it and she said she had looked at it already...which was a nice statement from her because it showed me that her short-term memory was working. I looked around and found the card on the bulletin board and pulled it down to read. There was also a long 3 page letter inside the card. When I asked Sam what the letter was about, Sam replied "I don't know what the hell that is" (sorry Lisa)- but we both started laughing, because it was a really long letter and it would be really hard for Sam to take-in and read all at once. I had Sam read the card out loud to me and then I read highlights from Lisa's letter which she enjoyed. Also as we were sitting in her room, emergency folk walked by with someone in their stretcher and Sam asked me if I could close the door so we could have some privacy. I also think she is just tired of seeing the people in stretchers rolling by her door and it makes her sad...it would make anyone sad. Therefore I appreciated the request which was truly an acknowledgment of her surroundings. A little bit later, Sam who had been in an amorous mood all night, asked me if I found her attractive. "Absolutely" was my immediate response... I have always found Sam attractive ever since we first laid eyes on each other 15 years ago. Sam was pleased with my answer as we then hugged each other and kissed each other rather passionately, before saying goodnight.

Update

Since I last blogged, I've taken Sam home over the past two weekends for visits, spent a day with Sam in her therapy classes and have had a report on her progress from the last two week period. Overall, I've been told by Jenny, the social worker at Park Terrace , that Sam continues to do well in Cognitive and Speech class, but has stalled a bit in physical therapy. My sense overall is she is doing okay, but not great as I still feel that her medications are just a bit off. I did see her doing alright in cognitive and speech and it was fascinating to see how the therapists work with her, but she still has the repeating problem, and it doesn't seem to be going away. In physical therapy she is quite tired and it is hard for her to stand on her feet for long, although when I was in class with her she showed off for me and walked the length of the hallway back and forth with the "tabletop" walker. I've maybe lost a bit of perspective, but I know to trust my instincts and Sam was definitely doing better before the most recent change in medications about 3 weeks ago. However, this past weekend's visit went very well and Sam enjoyed seeing Lisa on Saturday and Sian on Sunday. Lisa talked to Sam about her artwork and read out recipes from old cookbooks that Sam use to use in her beautiful pieces. Overall Sam was quite inspired and lively. After Lisa left, Sam wanted to see more of her photographs and so we went through some of them together. I hadn't looked at Sam's photographs in awhile and was taken aback by just how beautiful they are. I made a mental note to myself to try and have some of them framed when I next have the chance. The following day, Sam was very sleepy during Sian's visit, but perhaps due to all the activity the day before. However, Sam recognized Sian right away and had a good time listening to Sian and enjoying the fire, in the fireplace, along with the cats.

Drawing in Darkness

This morning I ran into Sam's speech therapist who happened to have come in Saturday morning to finish up some work. She told me that Sam was really doing well and engaging with the environment in a way that they have not seen her do before. Pam told me that for instance, one day last week when Sam was in class, she was cold and instead of just saying "I'm cold, "I'm cold" which is what she has done in the past, she instead rolled her wheelchair over to the fan and shut it off. Pam also told me that they are now trying to teach Sam to roll the wheelchair with her hands, and she is starting to do it. This afternoon, I asked Sam to demonstrate this for me and she did. I was very impressed. On the down side, Sam has developed this tick where she constantly repeats the same word or words over and over again..especially when she is tired or bored. She seems to have some control over it but not much. I hope that eventually this will disappear, but will talk with people this week at the facility about it. Also, today in the afternoon I took out the "Buddha Board" for Sam to play with for a little bit. It is a way to paint with water on a board, and the more water you use the darker the picture you paint. The water slowly evaporates and you can use the board over and over again. The picture is mostly shades of gray. Sam spent about an hour painting today and at a certain point turned to me and said "I'm drawing in darkness". It seemed quite the poetic statement, and also quite a factual statement as well.

Good Therapy Reports

This week I received a report from Sam's various therapists and overall it was excellent! Apparently she is doing extremely well in cognitive and speech classes. Physical therapy lags behind just a little bit and then occupational therapy. This is the week that Sam's medications changed, and so I was surprised to receive such a positive report, since my interactions with her in the evenings have been mixed. I've experienced Sam being very confused, and reporting bizarre made-up stories that are rather disturbing. However, I have also seen some good changes, so with the positive reports, I will assume Sam is in transition. Last evening in fact was the first night Sam was doing extremely well. She is eating much better and is enjoying her days. She told the aid who was working with her last evening that I was a very good cook. That used to be the case when I actually cooked, which was when Sam was well. Sam also seems to want to see more people, and have visitors, so I might try and plan another gathering at home. Also, Sam is starting to use here feet to move herself about the facility n the wheelchair. This is a good sign, although she can't remember which room she is in, she knows the general direction quite well. I will be spending the weekend with Sam at Park Terrace, but hope to bring her home again next week.

4 Times More

I held my breath this evening when I walked into Part Terrace to visit with Sam. I didn't know what to expect after the difficult weekend. When I arrived Sam was in the main dinning room watching TV with all the others and she greeted me warmly. I could tell right away that at least she was doing well and in a good mood. She was being very loving with me all evening and when I said to her "I love you sweetie", she looked me right in the eye, took my hand and said "I love you 4 times more". As she was holding my hand she noticed that I had a slight scar and asked me about it. I told her that I had burned myself slightly opening the oven door. She put her fingers gently over the scar and said she would heal it for me. She held my hand in hers like that for a very long time and I was very moved by her gesture. I thought about putting my hands on her and trying to help her heal, but the thought made me very sad, so I just let her healing hands hold onto mine.

Faith and Hope/Weekend Update

Due to the medication changes, it was the first real difficult weekend I have had with Sam. It all is comparative of course, so after seeing great progress with Sam's awareness levels last weekend, this weekend instead there was great confusion and odd/made-up stories as if talking about real life. I have not seen Sam this way for many months (probably @4-5 months). Throughout the weekend however, she was still "Sam" and still very aware at times. She was happy, but at what price..... For me, one of the most difficult trials is watching Sam change as the doctors try different medications or dosages of medication on her. She has made good progress, but it all seems so fragile. I understand that it takes awhile for the body to adjust to the changes in medication, but witnessing those changes challenging beyond belief. One needs great faith and hope.

On the positive side, Sam is getting physically stronger and she is doing quite well in physical therapy. Also, Sam did have a friend/colleague visit her this weekend and Lynn brought her dog "Pudding" along with her as therapy for Sam. The visit went well, and Isabella and Luigi kept their distance from Pudding, a Yorkshire Terrier and the same size as Luigi and Isabella. That one hour with Lynn, Sam, Pudding, Isabella and Luigi was lovely.

Vanna White

Tonight Sam seemed to be doing quite well. I can tell that her awareness of her surroundings, and her short term/long term memory have really improved. As a result however, she is much more emotional and upset at times and therefore today they increased some of her medicines. Tonight though was just lovely. We watched Jeopardy and Wheel of Fortune- which has become our usual. When Wheel of Fortune came on the T.V., Vanna White was in the opening scene on a balcony on the stage, waving to everyone. Sam turned to me and said, "I want to push her off the podium and then she'll fall right onto the wheel ....the Wheel of Fortune."......and Sam and I both started laughing really hard. Sam's sinister sense of humor was shining through and it was good to see it back, to see a glimpse of her sarcasm ...even if just for a little bit.

Home With Sam

I decided to pick Sam up from the facility on Saturday morning and give her a tour of New York City. It was a beautiful sunny day and I pointed out many highlights for her, which I know she recognized. I had planned on driving down Fifth Avenue, in front of the Metropolitan Museum of Art, but little did I know that there was a parade taking place that day and so Fifth Avenue was blocked. I did manage to have her peek down the side roads to the Museum and she recognized it immediately. She wanted us to go inside the museum so that people could see us together. I then drove us over to the Henry Hudson Parkway and it was a beautiful drive. When we passed the sign for the Cloisters, Sam asked if we could go visit. I Immediately thought to myself of just how inaccessible the Cloisters is for people in wheelchairs and so told Sam perhaps another time. Sam knew the roads we were driving on, as we have been driving these roads for many years and that was lovely. I could tell that Sam definitely has become more aware of her surroundings, with a deeper level of understanding and I even think her short-term memory has improved somewhat. We had a very quiet weekend together but simply lovely. Even our cats, Luigi and Isabella seemed to return to their old ways with Luigi sleeping next to Sam and Isabella next to me.

On our way back to the facility on Sunday afternoon we passed a Mobile Station and Dunkin Donuts. I quizzed Sam (a bad recently developed habit of mine) and asked her what happens at a Mobile station...she looked at me oddly and said "we get gas for the car" and then I asked her what about at Dunkin Donuts and she said "I get Krullers". I loved the Kruller response, since Sam always did get Krullers when at a Dunkin Donuts. It probably has been years since she was at one, but I saw it as a sign of her improved long-term memory. Although Sam was mad at me for taking her back to the facility, once we arrived and familiar people there started greeting her, her mood changed and she was like a shining star. Everyone wanted to know how her weekend was and she very loudly, and repeatedly stated over and over again to all those who asked ... "Great!"

Weekend at Home with Sam

Sam spent Friday night until Sunday afternoon at home in Yonkers. We had a good time this weekend, and it was great to have her home. One friend/colleague whom Sam had worked with for many years at the Met visited on Saturday, and although Sam was a bit tired, she remembered Mary very well. The rest of Saturday was spent lounging with the cats and taking naps. On Sunday morning we slept in, and had a big breakfast of Sam's favorite foods...pancakes with blueberry/chicken sausage and fruit. Sam happily ate everything. I had suggested that we go on the computer and Sam could blog a piece -in her own words. Sam said to me "blog?" "what am I going to say?" and I told her that I would try and help her think it out. However, Sam was just a bit too tired to do the blog, but maybe the next time she is home. I may try and take her home again this weekend, or alternate weekends, I'm not quite sure at the moment. I will get a report on her progress this week, which I think has been slow and inconsistent over the last two weeks, but overall moving in the right direction.

The Bench

Yesterday morning, Sam and I went downstairs and outback in the courtyard of the facility. We found a nice shady spot and sat down on the bench and Sam was in her wheelchair. Sam then told me that she wanted to sit on the bench. Since I have been trained in "transfers" with Sam, I thought to myself, why not...and together we carefully transferred to the bench.. Sam said she felt "normal". I watched her very carefully because her core stability is still being strengthened along with her trunk control. I had brought her camera and decided it was a good time for her to try and use it. I put the camera around her neck and let her do the rest. She took a lot of pictures and it wasn't before long that she started taking pictures of me. As soon as I can figure out how to download them to the computer, I will certainly post them on this blog. Sam managed to sit-up properly while taking pictures for well over a half-hour but when she started to lean a bit, I asked her if she would be more comfortable back in the wheelchair. "Yes" she said, and so she we transferred back and went upstairs for lunch.

Take Me Home

Sam was in good form last evening. She was flirting with me, wanted just to go home and to share our bed together. She believes that home is Brooklyn. Brooklyn is where we spent the best 14 years of our lives together, so no wonder she believes Brooklyn is home. We barely had a chance to set-up in our new house together in Yonkers, before all this happened. I didn't tell her last night that we no longer live in Brooklyn, since it didn't seem necessary and it is truly where both our hearts are. I choose not to take Sam home this Labor Day weekend, because I was not sure if she would be fully recovered and second, I needed to recover as well from a very difficult August. I hope to take Sam home next weekend though and perhaps, if possible get into a pattern with her; alternate weekends home, weekdays at Rehab/Nursing facility. One day at at time though, as Sam said last night.

How are you doing?

Sam finally seems back to herself. In fact she seems a little more aware of things outside herself. This evening she asked me "how are YOU doing? I told her that I was a bit tired after a long day today and she said..."Go home and take care of yourself....get some rest". Wow. That was a pretty amazing comment coming from Sam and it was also almost a conversation. I was very touched by her concern. I also heard today from the nurses, that Sam was doing Karaoke again and it was just her and her roommate singing very loudly for most of the afternoon. I was thrilled to hear this news and when I asked Sam about her day, she said it was great.

Relief

Sam was doing really well today. In fact she seemed back to herself, where she had been a few weeks ago, before all the problems started. She even seemed to have a bit more insight than usual. She had a cardiologist appointment at Mt. Sinai, but when we got there, apparently they didn't have her down for today and the doctor was still on vacation. There was obviously a mix-up, but they have rescheduled for next monday morning. Sam seemed content to have gotten a little bit of fresh air and a bit of different scenery. She said some amazing things to me while we were waiting for her transport back. At one point she looked at me and said "I have a lot of respect for you- you've stuck with me through all this" and then she started to tear-up. Her sentence shows quite an awareness on many different levels. I too teared up and then gave her a nice big hug and kiss.

Mt. Sinai and Dr. Edelman to the Rescue

After seeing Sam's mental state deteriorate last week and no one at Park Terrace responding, I contacted Sam's Primary Care Physician, for help and advice. Dr. Edelman immediately responded to my inquiries and even had a long conversation with me to determine the best way to proceed in order to help Sam in her current situation. The outcome was Sam being sent to the ER at Mt. Sinai due to a change in her mental state and ultimately being admitted to the hospital last Friday night (actually at @2 am Saturday morning to be exact). Dr. Edelman put Sam's "team" in place and immediately the neurologist changed her medications. They did a number of tests, including a new EEG and determined that Sam does not need any seizure medications. It is now 5 days later and Sam is much, much better. She was just discharged back to Park Terrace this evening. There are still some unresolved questions related to her fainting spell and her heart, but Sam has a Cardiologist appointment on Friday (thanks again to her primary care physician) and so hopefully that too can be resolved. I also told the social worker at Park Terrace today just how disturbed I was by the fact that there has not been a neurologist available at Park Terrace for the past 3 weeks, and the fact that everybody acknowledged that there was a serious problem with Sam but nobody did anything. I received an apology from her and was also told that I would be hearing from their head administrator so that they can assure me that this will never happen again.

Regression

Since Sunday, Sam has had fever, but it has decreased over the last few days. She has been able to participate in her therapy classes, and no longer needs to be put into bed in the middle of the day which is the good news. The bad news is she has really regressed with the change in medication, and now repeats words continuously and can't help herself. She doesn't do this all the time, but it happens a lot. I feel like her awareness level has changed for the worse as well but am not 100 % sure. Many people at the facility are away on vacation and it is a hard time to get answers . With that said, "Sam" still comes through and can talk about all sorts of things, but it is truly a very hard moment.

Music to My Ears

Since I have just come down with a bad cold, I won't be visiting Sam today out at Park Terrace. I did call this morning however to see how she was doing and the person who answered the phone at the nursing station said, "oh....she's right here in front of me, ...Sam- Marcie's on the phone". I then heard Sam loudly say..."Hi Marcie!". That was true music to my ears. I could tell right away that although Sam might be tired, she was back to herself. I also spoke with Sam on the phone and afterwards felt like at least today, I could rest well knowing that Sam is getting back on the right track.

Adjustments

The Doctors changed Sam's medication yesterday morning and by last night Sam finally seemed to be getting back to herself. She is still overly tired, but otherwise doing much better. Hopefully over the next few days and week she will get back to where she was before her most recent hospital visit and adjust fully to the new antiseizure medication.

Difficult Times

Sam has had a very difficult week. The antiseizure medication is very strong and Sam has had a bad reaction to it. This weekend the doctor cut the medication in half, and it is now at the lowest it can be while still protecting Sam. After many discussions with various doctors at the facility and outside the facility it appears that this medication is the safest, with the least side effects. Apparently all antiseizure medication is harsh. I have been told that it can take a couple of weeks for the body to adjust to it. It is sedative, so Sam has been both physically exhausted and also dizzy. They have been monitoring her blood pressure and heart rate, since she is generally not feeling well. She is only participating in Therapy classes a little bit in the mornings and then they need to put her into bed. It is tough to watch Sam go through this struggle, especially after her doing so well and having her first home visit. I do have faith that Sam will get through this, but it is very hard to bear witness.

A Bit of a Scare

On Wednesday morning, the facility told me that Sam had passed out in physical therapy and after they saw how low her blood pressure was, decided she needed to go to the Emergency Room to get checked out. When i got there, Sam's blood pressure was almost back to normal, but her heart rate apparently was very low, and that was much more of a concern than the blood pressure. They therefore decided to admit her to the Hospital, for observation. She only returned to Park Terrace late last night, after numerous tests of all sorts turned-up nothing and they said she was fine. The cardiologist said it could have been any combination of factors, but was not an acute problem. He also said that any of her medications could have caused the drop in her heart rate and blood pressure. He felt (like I) that she is on way too much meds. Also, the EEG test that they did showed a "potential" for brain seizures, and therefore they recommended yet another medication for her protection. Early next week the facility doctors will discuss Sam's meds. and hopefully reduce them. Also, today at the facility, Sam told me she was feeling dizzy. I was very concerned of course and had them take her blood pressure and heart rate, which all was fine (i think a little low for Sam though). Later that day, she got her period and I realized that this of course could not have helped matters and certainly could make any girl feel dizzy, especially if you were on a ton of medications. After some Tylenol, Sam's dizziness went away as did her stomach cramps. I will have Sam see her proper physician outside of the facility for a full evaluation, although it is a complicated situation with her in the Rehab./Nursing facility, under various different Doctors' care.

Back At The Facility

The last two nights back at the facility, Sam has been doing really well. Although I don't think her memory has improved much, it is her awareness that seems to be getting stronger. Again, Sam is very insightful, On Monday evening, she took my hands in hers, looked me straight in the eyes and said "you are very important to me.....now more than ever" and then she started to tear-up a bit. "Wow"- I thought to myself, she understands her situation. She also asked me on Monday night if I was going to do the same thing tomorrow...I asked her what she meant and when she couldn't explain herself, I said "do you mean my visiting you?" and she said "yes". I told her that on Tuesday evenings I have many errands to run and I normally don't have the chance to visit. She looked at me with a bit of confusion and concern in her eyes and said, "well, you have to come visit me", as if... what could I possibily be thinking. Of course, with that statement and look in her eyes, I really had no choice but to visit Sam last night. I was very glad I did, since Sam was stringing together words and making sentences that were somewhat unusual for her. For instance, when she was changing her clothes and getting ready for bed, she was struggling with her shirt and she asked me..."Marcie, can you help me with this?". That is unusual. Also, right before I was leaving, she looked at me and said "you have a very good night....and then she used the nickname that we reserved only for each other in private moments" I could tell she was very pleased with herself for using this name for me, and was waiting for my response. I was so thrilled that she could remember the nickname, and use it properly, that I gave her a big hug good night and told her just how amazing she is.

Sam's First Weekend Home

Sam spent July 31st-August 2nd at home and even had a small birthday gathering with colleagues/friends from work. Overall it was truly wonderful for Sam to be home and I know she enjoyed the time. She did not recognize her home in Yonkers, but did recognize all of her things in the house. We had only moved into the house 5 months prior to her getting ill, so her most recent memories 6-12 months beforehand seem to be the most unclear. There were moments on Friday night where I personally did not know how I was going to handle the situation, and I was never so happy as to see the nurse I had hired arrive on Saturday morning, but by the time Sunday rolled around, I thought....okay, this will be manageable. It was certainly a learning experience, since Sam needs to be kept on schedule with her food, medicine and bathroom training. Sam did recognize her cats, but both she and the cats were quite cautious of each other. Sam enjoyed receiving her guests on Saturday, opening her presents and reading her cards. I know she recognized almost everyone who came to visit. Again, I think she had the hardest time in knowing people that she had only worked with for a short period of time. I do think Sam became a bit overwhelmed by the time the second group of visitors arrived and so we (the nurse and I) just let Sam sleep on the couch for the latter half of her party. On Sunday I had Sam log onto her computer and I opened -up for her the Rachel Maddow site and downloaded video clips for her to watch. She enjoyed being on the computer very much and was laughing out loud at some of the clips. Wendy and Aileen helped Sam and I on both ends of her visit which consisted of both physical and emotional assistance. On the way back to the facility, in the car, Sam told me that she was confused and didn't understand what was happening. I explained the situation to her as best I could and she seemed okay afterwards. She was happy to be back at the facility and immediately recognized her roommate. I have planned to take her home again this weekend. I would say that it is very good for Sam to be home, a little less so for me, since all the time must be devoted to Sam's needs. I will probably alternate weekends soon, but at the moment it is hard not to bring Sam home. I can also say that at the Facility, Sam looks great in comparison to those around her and knowing how much progress she has made; at home however the comparison is much harder to make.

Sigmund F. and Coney I.

Every weekend I bring the Sunday paper to the facility to look at with Sam and we jointly identify an article to read. This week we identified in the Arts and Leisure section the article entitled "Sigmund F. and Coney I. about an art show that is currently on display at the Coney Island Museum. The pictures were fascinating and Sam really wanted to read the whole full page article. We sat outside in the "garden" at Park Terrace yesterday morning and took turns reading each paragraph. I know Sam really understood the article and enjoyed it. I was happy to see her responding to this article which was very much related to the interests and sensibilities of the "old Sam". Later in the day, Sam's long-time friends Lisa and Tony arrived for an afternoon visit and we all went out to the Zoo. It was refreshing for Sam to see them and for them to catch Sam up on all that was happening in their lives and with their artwork. I welcomed their fresh energy. It was a lovely day all around and we even got caught in a rain storm, but Lisa and Tony quickly identified safe cover and we watched the rain in a dry spot until the sun came back out. Sam was upset to see Lisa and Tony leave and remarked about wanting her life (old life) back. Sam is incredibly insightful and I hope that bodes well for her future progress.

Good Report

I received the two week update from the social worker yesterday regarding Sam's progress and as I have seen myself over the last few days, her report was quite positive on all fronts. Every therapist said that Sam had made some improvements over the last two-week period. This week was also significant because every morning I have been going over to Park-Terrace (@8:30 am) and receiving my "medicine training" as well as "transfer" training with Sam, so that I will be able to start bringing her home on the weekends. I am happy to report that I have passed all of the tests. We did have an emotional moment when Sam refused to get out of the car and insisted on my taking her home. She was very angry and upset, and we gave her time to regroup, but it was insight into what might lay ahead when she comes home for the first time. Also, I am happy to report that the house is now wheelchair accessible for Sam (partially) and both a solid ramp and stair lift have been installed, so the goal of having Sam home for the weekends will hopefully become a reality as of July 31st. I have now ridden the chairlift a number of times and highly recommend it for anyone! A special moment last night occurred when I was putting Sam into bed. When I asked Sam to stand -up and I was holding onto her, she looked at me with a smile and then got as close as she could and gave me a nice big hug.

Get Me To Newark Airport

Saturday morning, Sam was asking everyone to get her to Newark Airport so she could get on a flight out of there. Or at least this is what was told to me by the aids working with her when I arrived late morning. They also told me that when they were at breakfast and listening to the news, Sam seemed upset to learn about Walter Cronkite's death. They asked Sam if she new who Walter Cronkite was and she apparently said without missing a beat..."he was a newscaster". They were impressed. Sam was doing very well again yesterday and I now realize that among other reasons, it is mainly because her short-term memory just seems to be slightly better. For instance, I stepped out of her room to go check the chart to see what was scheduled for dinner. Five minutes later when I returned to her room, Sam looked at me and said...."So, what's for dinner tonight?" Although that might not seem like much, it is simply amazing, since that means there was carry-over from when I left the room to when I returned. This has not been happening- i.e. short-term memory loss. I teared -up because it is these incremental changes that are significant. Later on, when Sam and I were talking about how much we love each other, Sam looked at me and said, "you are everything I want". Sam is the most important person in the world to me, and so to have her be able to express herself so clearly and passionately is deeply moving.

Gosh

Sam has a wonderful habit of saying "gosh", or "oh gosh" a lot. It is quite sweet. Tonight I felt like saying "Gosh" myself. Sam was doing very well and was the most aware I've seen her in awhile. "Gosh" I thought to myself. When I told her I thought she was doing great, she said "I've been working on it". Instead of watching the usual game shows......Jeopardy and then Wheel of Fortune...Sam wanted to watch the news. I put on Chanel 13 and we watched for a little bit but when I couldn't follow the story anymore and frankly got bored I asked Sam if she would mind if I changed the station ...maybe to Seinfeld. Sam was quite enthusiastic about watching Seinfeld and we laughed together through the whole show. We, like many other people have watched all of the episodes a thousand times over, and so it was refreshing to see Sam enjoying the show and laughing in all the right spots. I stayed as late as I could, because I know that this was an unusually good evening, so I wanted to savor every bit of it.

Correspondence

Yesterday, a number of people at work gave me cards/messages to give to Sam and then when I arrived for my visit in the evening she had also received three cards as well, in the mail. She had not received any cards for awhile so it was kind of funny that all of a sudden everyone sent mail. I had Sam open each card and read it out loud to me. Many of them were very moving and Sam said afterwards, "I have some very good friends". I then put all her new cards up on her walls/bulletin board and then we watched some T.V. together and she fell fast asleep.

A Prisoner in Your Own Body

Sunday evening, after another nice day in the Park and Zoo, this time with Wendy and Aileen, Sam asked me if I felt like a Prisoner. "No" I said, "but do you feel like a Prisoner?" "Yes" she said "in my own body". "Do you mean physically, mentally or both", I asked. Sam thought for a moment and then said "mentally, in my mind". I told her that it was a good sign that she could communicate and recognize this feeling and that she was in a Rehabilitation Center in order to dissolve that feeling of being in a Prison. "yes" she said, "good".

Zoo Members

For the seventh time, Sam and I visited the Queens Zoo yesterday and enjoyed ourselves immensely. We are now proud members of the Zoo. Sam really wants to go home, but going out to the Park and the Zoo is the next best thing. We've gotten into a pattern of visiting the feeding/petting part of the zoo first and then going onto the main zoo area just in time for the sea-lion feeding at 4:00pm. I realize that some people are scared of wheelchairs and so I manage to get Sam a good spot for watching the feeding, by just pushing our way through and scaring the little kids and parents along the way. It is great to be outside and for Sam to be stimulated by all of the activity. In the meanwhile, I am building-up my muscles every weekend by pushing Sam in the wheelchair and together we are learning a lot about our future together. I am hoping to have the house ready for Sam's first home visit right around her birthday on July 30th, but there is a lot to be done beforehand in order to meet that goal. Overall Sam is making progress and is working hard in therapy.

Just Too Smart

The speech therapist this evening told me that Sam had remembered that she went to the Zoo this weekend and could also recall other activities once clues were given to her. Sam seemed to know that Pam from the museum had visited her this weekend too, and she was enjoying the trashy magazines that Pam had brought her, but did need clues to recall the day. I asked Sam what animals she saw at the Zoo this past weekend, and after thinking about it for a little bit, she said to me "you know, the usual". I had to laugh at that since Sam is just too smart. She knows how to get around answering the questions, when she can't recall or pull the information that she has in her head. What a great answer. Later in the evening when I was saying goodnight, Sam told me to "get home safely". It was a sweet end to a simple evening together.

Tube Free

Today Sam pulled out her feeding tube again, but finally for the last time. Her Doctor said to keep it out.....for good. Way to go Sam! This was the last tube in her body and now she is tube free. When I visited her this evening, she said she pulled it out because it was bothering her. I'm glad that she can have her body back and that the binder that protected the tube is no longer wrapped around her middle, making her sweat. It will also allow her more mobility in physical therapy. I was thrilled tonight to see the little bandage on her stomach.. Finally, the tube that has not be used in over a month has been removed, courtesy of Sam. Also, on a slightly different note, Sam got the answer to the final jeopardy question this evening....it was about Napoleon, and I asked Sam what State in the United States is French, or did the French settle (the main question was more complicated, but this was the gist of it), and Sam thought for a moment and then said Louisiana. Louisiana it was! Quite exciting.

Visitors Welcome

In talking with the neuropsycologist this morning, she said that it would be very helpful for Sam and for her continued progress to start having different people from various parts of her life visit with her. Visitors are needed! If anyone is interested in making a visit out to Park Terrace, and spending a little time with Sam, please email me at marcie.karp@metmuseum.org in order to coordinate. Tonight, Sam was doing well. When I asked her how her day went, she said "I had a great day". She then said "everyday gets better and better".....what more can be said.

Sunday in the Park With Sam

Picnic in Corona Park

On Sunday, the facility packed-up a lunch for Sam and with Wendy and Aileen to help, the four of us headed out to Corona Park to have lunch. It is the most amazing feeling to be able to walk out of the door with Sam, and spend time together outside of the facility. Sam was very content and we had a great day. I took Sam again to the Zoo and perhaps over did it, but simply did not want to head back to the facility too soon. Tonight, Sam again was doing well and we had a good evening together. The nurse is showing me how to help Sam to bed, and we are having a lot of fun with it. Sam also was being very sweet tonight and told me that she felt lucky to have me. We then exchanged a number of compliments with each other and it was all very touching.

Queens Zoo

Today Sam and I ventured outside Park Terrace and went to the Zoo. It is within walking and wheelchair distance and so for the first time in our new lives together, we had an adventure. It was refreshing and invigorating for us both to be around nature and animals instead of inside the facility all day. Sam as always spotted the animals way before I could and would point them out to me. We also went to the petting zoo and Sam fed some of the sheep and goats. She had a big smile on her face all day as did I. The morning however did not start out well, as again Sam was depressed when I arrived. She was refusing to eat because she said she was dead, and dead people don't need food. After talking with her about this; telling her that she might feel dead, but in fact she was quite alive and well and that alive and well people need lots of food- she ended up eating everything. I mention this episode in the morning because my time with Sam recently has not been one way, nor straightforward, but rather very complicated. We had a wonderful time today, but it was mixed with all sorts of emotions. On Friday, Jenny gave me the two week update on Sam and basically said that all the therapists thought she was doing very well, especially in cognitive and physical therapy. They therefore decided not to change her medications. She said that it is a good sign that she is acting depressed as they all feel that she is becoming more aware. She also told me however, that Sam had lost 3 pounds over the last two weeks and because of that, they are not yet removing her feeding tube. I must say that I was disappointed in a way, all around with the report. I'm glad the therapists think she is doing well, but in my experience, I still feel she is over medicated. and perhaps the medication itself is causing some of the depression or crying. I also think they could easily remove the tube at this time but they simply won't do it quite yet. As always I will let Jenny and the neuropsychologist know about her mood this morning (perhaps this is why she lost 3 lbs....depressed and the aids that feed her during the day don't take the time to talk her out/around it) and about my overall concerns.

Standing Tall

I still have a big smile on my face from this evenings visit. Sam was in good spirits and doing very well. When it came time to go to bed, Ms. Clarke asked Sam what she asks her to do every night, that being to stand up from the wheelchair, turn and then sit down on the bed. Tonight, Sam stood straight up for the first time that I have seen, and she towered over Ms. Clarke. Sam is @5'8" or more and Ms. Clarke had to look up at her for the first time. Ms. Clarke, looking up at Sam started laughing as she held onto her. Sam then stood there, straight up for awhile. It was wonderful to see her standing so tall . Sam asked if she could sit down now and then we all started laughing, because it was just such a wonderful a moment. I haven't stopped smiling since.

Dancing and Singing

I was quite anxious about visiting Sam this evening, but when I arrived she was calm and in a happy mood. I was told that she had been doing karaoke again for about two hours this afternoon and was also dancing in her wheelchair. She again was hogging the mike, but apparently shared it a bit more than the last time. I did talk during the day with the social worker about what occurred over the weekend and Jenny's interpretation was that Sam is becoming more aware and this is what happens when people start getting better. She knows it is a really tough moment. The doctors will also discuss her situation this week and make any adjustments to her medication, etc. Jenny and I also discussed the possibility of my getting a pass for Sam to go home for a day or weekend and what that would involve. It was great to begin discussing this possibility, although one main problem is that there are 19 steps to our house, and at the moment, Sam can't do steps. There is no way of getting her into the house quite yet, but I will work on that.

Is It Me?

When visiting Sam today, I again saw her sitting with her roommate talking. This time however when I came in, she looked at me and immediately her eyes swelled with tears. I knew then it was going to be a rough day. Sam continued crying...tears literally pouring down her face on and off for most of the day. When I told the nursing staff about Sam, they didn't know what I was talking about since as they told me....."she was fine all morning, and was even joking and talking with everyone passing by in the hallway". They then said it must be me. I didn't want to believe this, but I realized by the afternoon, that maybe they were right. Sam as always said some things today that were really quite heart wrenching... one statement in particular that really got to me, was when she said..."You don't know how hard this is.....I'm in pain" I started crying at that and she then said, "I'm sorry, I didn't mean to make you cry". I did ask her what she meant by pain..."was it physical"...."no" she said...."was it emotional"..."yes"- was her answer. She also very much wanted me to take her home and told me that she didn't like her current apartment (meaning her room). She also said that she can't communicate properly. I tried to be supportive for her today, but when she started talking about going home I thought to myself... maybe it is me.... I then told her at that point that I seem to be upsetting her and was going to leave. Her eyes cleared up a bit and she said okay...and then I knew right then and there that I was indeed the trigger for her today. I left her with one of the nurses at the table in the main dining room and explained the situation to her. The nurse understood and right away gave Sam the daily news and some magazines with funny pictures in them and Sam brightened-up immediately. I just waved goodbye and Sam waved back and I walked quickly away. I do know that her medication needs to be changed with all these extreme ups and downs, but I also know that at times, I am triggering these more intense emotions as well.

A Saturday

Saturday was a very good day for Sam. When I arrived, I saw her from a distance in the dining room talking with her roommate at the table. I waited a little bit before interrupting since it was very sweet to watch. When I finally did interrupt, Sam actually kind-of introduced me to her roommate, which was unusual and then the three of us talked for awhile. Sam was feeling very happy and was calm but alert all day. We watched a few episodes of Sister Wendy's History of Painting, and Sam was absolutely fascinated by it. As Sister Wendy visited various countries and Museums, we talked about our various trips to those places as well. Sam definitely remembered parts of our visit to Italy. Later on in the day, Sam turned to me and said something to the effect that "the best thing that ever happened to her was meeting me". It was lovely.

A Long Day

Yesterday morning I called the nurses station to talk with Sam before she started her day. They put Sam on the phone and when I asked her how she was doing, she said "great", and she told me that she was very much looking forward to her day. She asked me if I loved her and I said "of, course!, I love you very much" and she said, "good, good, good". Well, we continued with our conversation a little bit more along these lines and then the nurse helped Sam hang-up the phone. I felt good about how Sam was doing at that moment, and knew I'd be seeing her later, after work as well. A few hours later, the social worker, Jenny called me to first to let me know that the Doctor had removed the staples from Sam's head and that the wound was healing nicely. Jenny also told me that Sam had been crying most of the morning and was very confused, thinking it was her birthday and no one was there to celebrate with her. They had alerted the therapists to her situation and would work with her throughout the day to help her; they were also going to ask Lee to play music and talk with her during recreation time. I then began feeling concerned about Sam, contrary to how I had been feeling earlier. When later in the evening, I arrived, Sam was in the dining room and when she saw me she started to cry- a lot. I knew right away from seeing her reaction that she was being over medicated. The doctors are aware of her situation, but seem to need a two week period to see the full effects of new medicine and then make adjustments etc. After talking with Sam a bit last night, she was actually aware that she was confused, and that the "celebration" she was thinking about was all in her head. She was even able to identify that she was feeling "mentally off" all day. After talking with her more during and after dinner, she seemed to calm down. In fact, when her friends, Wendy and Aileen arrived Sam seemed very much back to herself. In fact, she was doing really well. Wendy and Aileen joked with Sam and Sam joked back. Sam was laughing a lot, and it turned into a really fun evening. Wendy took a bunch of pictures and Sam really hammed it up. In fact we all stayed past visiting hours and no one threw us out. All of us sang along to a game show on T.V., called something like "Do You Know the Lyrics". It was a great ending to what seemed to me, like a very long day.

Karaoke

When I arrived this evening, Sam was just finishing dinner and so I had a chance to talk with Lee, the recreational therapist, before spending the evening with Sam. Lee told me that Sam was doing Karaoke this afternoon and was even hogging the microphone. She said at one point that she and Sam did a duet to some pop song and it was quite something to hear. I apparently missed out. Lee also told me that she has been keeping a list of some of the comments and statements that Sam has been saying over the last few weeks. She is keeping this list, because she is really impressed with what Sam says at times. She plans on showing Sam the list and talking to her about it. She showed me the list and I too was amazed. Some of the comments are truly quite deep and philosophical.

Attitude

Sam is starting to be a bit more like herself again and has regained her natural attitude. Over the last two nights I've noticed that her wit and spunkiness are definetly back. That makes me feel a whole lot better. The social worker also called me today and said that Sam was making everyone laugh in the hall this morning. At a little before 9:00 am, all the patients are always lined up waiting to be taken to their therapy classes. Sam apparently said loudly that "it feels like we are all waiting for detention slips". At recreation time, Lee brought in a cool book of photographs that Sam new about and one of the nurses told me later that Sam was just great. She didn't know that Sam had worked at the Met and that she was really very impressed with her. Wow. - I don't know what Sam was saying during recreation, but whatever it was, it was good. Also, today they officially removed her helmet, after my complaints. I was hoping that they could put it on Sam at certain times during the day, but apparently it either needed to be on all of the time or none of the time. Park Terrace is after all an "Institution". - Also, the best news is that Sam was finally upgraded to thin liquids, i.e. water and such. Therefore, they are going to watch her carefully this week and then take tests to determine if she is getting enough calories, fluids, nutrition etc.. If all goes well, the feeding tube can be removed within the next week or so. Sam is still very tired and feeling a bit off, but having had a mild concussion and then staples in her head I think that she is doing pretty well. She and I have started watching game shows at night , first Jeopardy and then Wheel of Fortune. She actually guessed one of the phrases on Wheel of Fortune correctly last night "Climbing Uphill". Pretty impressive.

Weekend Update

The accidents last week really set Sam back a bit. Her speech and sharpness is just not where it was before her concussion and 10 staples in her head. Ms. Clark, my favorite nurses' aid and the person who has really looked after Sam, just returned from vacation a few days ago and even she said to me tonight that this is not the Sam that she left three weeks ago. After she saw how upset she made me with her comment, she then said that Sam will work through it of course, but it really put into words what I have been feeling over the last week. Sam now gets tired around 3:00 in the afternoon, which did not happen before her falls. In the name of protecting Sam they have put a helmet on her, but in fact, every time I visit, Sam has been sweating profusely and is terribly uncomfortable with her helmet. I feel like she is really overheating and everyone now is too afraid to take her helmet off. In fact she can't even have her glasses on with the helmet, because it cuts into her face, so she seems to be going around her days- not seeing. I will need to address all of these concerns with the various people at the facility tomorrow. On the upside, Sam seems to be remembering a lot and still comes out with some statements that are pure Sam. Also, after the large stuffed SpongeBob Squarepants arrived last week (thanks Brett and Debby), I played for Sam this weekend a number of SpongeBob episodes for her on the DVD player. Believe it or not she remembered almost all of the characters on SpongeBob and also said she remembered the episodes. Knowing that Sam watched SpongeBob when she was well thousands of times I am not surprised, but was still pleased to see her so excited by the show. All in all , we spent a nice weekend together, but Sam definitely has lost some ground both mentally and physically since her falls. She said it herself just a little while ago..."how do you feel I asked her?"..."vulnerable" she said. She couldn't have been more on the mark.

Two Steps Forward, One Back

Wednesday night with Sam was lovely. She was in a good state of mind and was able to speak in a couple of sentences all at once, which may not sound like much, but is significant. I have not heard her do this ever before. She also was able to look on her dresser for her tissues, which is a good sign, since she is becoming more aware of her surroundings. However, when visiting her this evening, she was really out of it and a bit confused. The facility itself was really hot and she was sweating in her new helmet, which I promptly removed. I put the air conditioning on for her in her room and she started to feel a bit better. The nurse also gave her some Tylenol since her head was hurting just a bit. That helped her as well. Her speech was a bit slurred tonight too, which I haven't seen in awhile. I know that she was very tired and when the aid put her into bed, she closed her eyes right away. It could be the change in her medication, or it could just be that she was having an off day. We all have those. I know that her progress seems to be two steps forward and then one back, but it is very hard to bear witness to the back step.
I'm hoping she will have a much better day tomorrow.

Up/Down/Good/Bad

Simply stated, it has been a terrible week. On Sunday morning Sam fell and hit her head while being toileted with an aid assisting. The aid apparently lost control of Sam. Sam had to be rushed to the Emergency Room, where she needed 10 staples in her head to hold the very large, deep wound together- Yes 10 staples and not stitches. I nearly passed out when the doctor was working on her. It was amazing that the Cat Scan proved negative. Thank God. The wound is about 8 inches long on the top of her head. The following day, I called everyone possible at the facility to tell them how disturbed I was, how negligent they were in not keeping her safe, and that I needed to know what their new plan would be for safeguarding her. Sam also continues to pull her feeding tube, which is hardly being used anymore, and I also wanted to know how they could resolve this problem so she did not become a ping-pong ball between the hospital emergency rooms and the facility every other night. Fortunately, yesterday they responded with a number of changes in order to keep her safe. First they will have two people do any/all "transfers' with her. This means whenever she is moved there will be two people to assist (short of going in/out of bed when there need only be one person). They have also put a helmet on her head to protect her, just in case. Sam looks pretty cool with her helmet and I think she likes it too. They have also started to give her by mouth the nutritional supplements instead of the feeding tube, and therefore, it may be possible that by early next week, she can have the tube removed. They are also in the process of adjusting her medications. I do feel that they know just how serious a situation her recent fall was, not to mention her previosu fall a few days before, and that they really had to step up there oversight and care. They are now watching her like hawks. Also, today was "family day" and so I got the chance to attend all of her therapy sessions. It was terrific to see how they work with Sam and to see just how far Sam has come. The neuropsychologist even admitted to me that Sam has already far exceeded all of their expectations. I think very highly of a number of the therapists, especially her speech therapist, as well as her physical therapist. Today, what was amazing was to finally see Sam walk for the first time since all this has happened. Sam walked almost 140 feet today with the aid of a "tabletop" walker, which is simply a chest level walker with four wheels. It allows Sam to rest her arms on two side pads while she walks. I thought Sam was fabulous, but the Physical therapist said she usually does much better! Well I guess with 10 staples in your head and pain medicine in your system it was fantastic that she event participated as well as she did all day today. The PT person also told me that Sam will be able to do stairs eventually. Not right away, as her balance and stamina need to be built-up, but it will happen. I was thrilled to hear this since we live on a hill with 19 stairs in front of the house, and that has been a great concern of mine. The PT person, Natasha, thought she'd be able to manage them eventually. I left the facility feeling like at least tonight, I should be able to get a good nights sleep, after 4 almost back-to-back nights/mornings in the ER and arguing all day with the people at the facility. Sam too said she was felling okay...hard to imagine, but hopefully she too will get a good nights sleep and continue to heal.