Daily Sam

Photography

2010-08-29T14:02:00.002-04:00

I gave Sam her camera yesterday morning and helped her sling the band around her neck. She held the camera as if it were always part of her and looked up at me lovingly. She than gave me a gentle hug and kiss. She was very happy. It was a gorgeous day, so we went outside and we took a "hike" around the perimeter of the facility. Sam would stop periodically as her legs would get tired from holding them up while i was pushing her in the wheelchair. Each time we stopped I asked her if she wanted to take a picture. Sometimes she did and sometimes not. Her pictures were pretty good, and I actually can say that they are better than anything I could do. She is as we all know very imaginative and resourceful and so when the camera seemed too heavy for her to hold up, she leaned it on her stomach and aimed the lens and took the picture. I wasn't expecting those pictures to be any good, but in fact they were perfectly focused on her subject. After it got a little too warm outside, we went into the car and I drove through the "drive-through" window at McDonald's, which has become our habit, and picked-up a strawberry banana smoothie for Sam. She loves them and always seems amused when we do this. We then went over to Joan and Bill's apartment (where I stay on Saturday nights) and we hung out for the rest of the afternoon. I had already picked-up lunch for Sam and we sat and "talked" (I do all the talking, because Sam has stopped talking for now), took naps and watched some TV. She did manage to say a few words to me yesterday though, which was surprising, she said "I love you a lot, and I've been meaning to tell you this for awhile". She also said she misses me. I was very touched, and told her the same. When we returned to the facility at 5:00 pm (I request "day passes" for Sam on the weekends now, from around 10:00-5:00), there was a big crowd upstairs in the "living room" area, with everyone watching T.V. We parked ourselves in front to see what everyone was watching, and it turned out to be a Fleetwood Mac reunion with Stevie Nicks performing. Everyone was transfixed...I imagine because most of the people there are former hippies. However we too were fascinated. I asked Sam if she remembered that she used to do a terrific Stevie Nick's impression that would crack-up our friend Aileen (she always laughed so much it turned to tears) and Sam did remember, I could tell. She started laughing right away an mouthing very quickly what would have been her impression. if she were making sounds. We sat there for a long while and Sam took my hand to hold in hers. As odd as it sounds, it was a wonderful way to end the afternoon.

Sam's Understanding

2010-06-14T19:44:00.003-04:00

I had a great weekend with Sam. I took her out for the day on Saturday. I first drove with her through a McDonald's drive through window to get Sam a large strawberry milkshake. She was amused by it all. I also drove by a lot of shops and shopping centers and Sam really was interested in going into some of the stores. I told her that we might try doing some shopping next weekend. We then went to Joan and Bill's apartment and stayed there all day. We were able to watch the new artist show on Bravo, and comment on it together. Sam was fascinated by it all and made some faces at the artwork. She even said out loud at one point..."I have some better pieces than that"...which of course is true and of course is the statement that any decent artist would make after watching the show. We had a lot of fun watching it together. I realized over the weekend that Sam's short term memory seems to be getting much better. In the afternoon, when I asked her about the milkshake, she remembered it was strawberry and that it was from McDonald's. She in fact remembered the whole morning, which was terrific. I had also brought Sam her camera for the weekend, and I just put it around her neck. She had a great big smile on her face when I did that. Although she didn't take any pictures, she held onto the camera and was quite content to have it as part of her being. We were also very affectionate with each other and that was really nice. On Sunday, we went to Inner Art class and Sam made a beautiful painting. She also shared her work with everyone at the end of the class which was amazing, as she used her voice to tell everyone that her piece was "heartfelt". The class gave her a round of applause. Also, one of the CNAs who works with Sam a lot, told me a wonderful story about her. On Thursday morning when Andrea, the CNA, went in to wake Sam up at the usual time- around 7:00 am, Sam was already up, wide awake in bed. Andrea was surprised and said "Sam- you're up already?". Sam used her voice and said, that she'd been up for awhile and was "very upset". Andrea asked her why she was so upset and Sam said "because this is all very hard on Marcie- It's all very hard on her". Andrea said she started tearing up when Sam said that. Andrea told Sam that she was getting much better and pretty soon, Sam would be back home with me. I was very touched by Sam's words, and of her understanding, which some days runs deep.

Memorial Day Weekend

2010-06-08T21:07:00.002-04:00

For the first time in about 6 months, I was able to take Sam home for a few days over the Memorial Day weekend. The first thing I noticed was that Sam has gotten much stronger physically and her level of understanding has grown as well. She was able to transfer to the car much more easily than in the past and could sit up for much longer periods of time. Overall it was wonderful to have Sam home and we had a great weekend. On Saturday, Ipicked Sam up early and our fiends Lisa and Tony came-up for a visit. We were able to help Sam outside to our little deck (with a bit of effort negotiating some tough spots) and sat out there all afternoon. Our friends Wendy and Aileen also joined us later in the day. Sam was doing quite well on Saturday. One of the highlights was when Lisa presented Sam with a beautiful framed photograph that Lisa had commissioned for Sam. Sam looked at it and tried to say something, but no words were coming out. I was able to interpret for Lisa and told Lisa that Sam really likes the piece. Lisa then looked at Sam and said "Do you really like it Sam?" I suggested to Sam that she try and clear her throat so she could tell Lisa what she really thought about the piece directly. Without hesitation, Sam cleared her throat and said out loud "Lisa, I am deeply touched" I think we all started tearing up. Lisa was able to talk to Sam about all the art shows she and Tony had seen in the last few weeks and noted the ones that she thought Sam would have especially enjoyed. Sam was thrilled to be in her element and be listening to her friend talk about art with her. It was great. After all the energy that Sam put out on Saturday, Sunday, in contrast found Sam needing to sleep the majority of the day. She did want to watch an opera on channel 13, which bored me, but it felt kind of normal...Sam watching something intense and artistically based, while I got bored with it and wanted to do something else. On Monday, Sam again was quite content, lively and her level of understanding was deeper than in the past. She also was talking out loud a lot more than she does at the facility and for the most part, ate well too. It was hard for me to bring her back on Monday evening, but Sam seemed fine with it. It was like she had taken a vacation and now she was headed back home. She was happy, and that was good. We had a fun ride back, as Sam vetoed certain songs on the radio and turned up the volume on others. When we arrived back and the nurses asked Sam how her time at home was, Sam replied out loud "wonderful, wonderful". The nurses couldn't believe Sam was talking. Neither could one of the neighbors near by, who said "she talks" (I actually didn't know that that particular neighbor could talk either). Sam wanted to sit in the common room with the large screen TV. I noticed that there was a Meg Ryan all day movie festival taking place, and I told Sam that she was in luck! Sam laughed out loud. When she was well, Sam would not have watched a Meg Ryan film even for a second. When I left, I told her to enjoy the festival and again she smirked that Sam smirk and waved goodbye.

Progress?

2010-05-24T20:27:00.002-04:00

On Saturday, I was able to be with Sam in Physical Therapy and she walked up 4 big stairs just by holding onto the handrail and with the PT holding onto her! She then walked down 7 small stairs. This was the first time I've seen Sam doing stairs and I was really impressed. Sam is absolutely amazing and is getting physically stronger. The therapists are also working on her balance and so I stood on one side of Sam holding her arm and the therapist on the other and Sam walked the length of the gym back/forth with a number of rests in between for almost a half hour. That too was amazing. Sam also decided to talk with us during therapy. I was surprised because Sam really hasn't been talking. In fact, this week I learned that Sam has not reached her goals in speech class and after two months of changing her goals and changing her medications, the Speech therapist, Meghan, has actually had to stop individual speech class with Sam. I was extremely upset, but Meghan said that this can happen with anoxic brain injuries. She said that Sam has great potential (unlike some of the other patients) and so might be back working with her in another month or so, and that they are monitoring her. Sam in fact still has her group speech therapy class along with all the other therapies and other type classes, such as tai chi/breathing class. It is true that Sam has been speaking very little on the weekends, but I just assumed that she was speaking more in her classes. This obviously was not the case. Sam also has developed a really bad problem with eating...or I should say not eating/spitting out her food. This problem has gotten worse over the last few weeks. I've asked the head nurse to see if the recent change in medication might be causing this, since it all seems to have happened around the same time. However, with all this said, Sam was speaking-up a storm on Saturday and even did karaoke on Sunday during the all day radio request show. The person in charge asked Sam to pick-out a Queen song and she picked out "Bicycle" . When the song was playing, Sam sang the chorus out loud every time..."Bicycle, Bicycle, I want to ride my bicycle I want to ride my bike...I want to ride my bicycle, I want to ride it where I like......We also were able to spend time on Saturday at Joan and Bill's apartment and Sam sat in the lazy boy chair, legs stretched out watching the big screen TV....she was so relaxed. It was wonderful to see her like that. We were able to be there for three wonderful hours and then returned to the facility. I do think Sam needs to get out for awhile and next weekend, Memorial day weekend, I will be bringing her home for a couple of days. After a really nice weekend with Sam, when I went to say goodbye to her on Sunday, she hugged me briefly and then pushed me away. I asked her if she was mad a me... and she said "yes". I said are you mad because I'm leaving you and she said "yes". I told her that if I could, I really would just want to be there with her and spend all my time by her side...she gave me a big smile and I gave her a big kiss.
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New computer

2010-05-09T17:35:00.003-04:00

This weekend I finally got Sam a computer and she is very happy to have one. Thanks to Wendy and Aileen, who visited over the weekend, Sam's computer got set-up properly. She now has her own email account at samorris1961@yahoo.com For those who wish, please send Sam emails directly to her and then she and I can read them and can respond together each weekend. When Aileen was setting up the computer she asked Sam if she already had an email account -and without hesitation Sam said yes and recited her old MMA account. Sam can type a bit on the computer but needs assistance to remember how to turn it on, how to use it in general and even to remember it is there. However, she was excited to watch msnbc clips of Rachel Maddow's show - especially the cocktail hour clips and was just very generally engaged. We went outside Saturday afternoon and strolled around the grounds. Wendy took lots of great pictures. As Sam's stamina becomes better, I've noticed that her daily schedule has been filling-up. Besides from her physical, occupational and speech therapies every day - Sam's schedule also includes the following:
8:00am- Breakfast
9:15 - Preview and Plan
10:30 - Information Processing
12:00 - Personal Best
1:00 - Lunch
3:00 - Mind and Body Arts
4:00- Creative Engineering
6:00 - Dinner

No wonder she is tired when I see her on the weekends! She works extremely hard during the week. On Sunday when I came in the facility, the aides stopped me right away and told me that for the first time, Sam almost went missing this morning....apparently Sam took the elevator downstairs by herself and went onto a different unit. She has never done that on her own before. When I asked Sam why she had gone downstairs, she told me that she just wanted to go "exploring". It's a good sign.

Our 16 Year Anniversary

2010-05-02T18:47:00.003-04:00

This past Wednesday, April 28th, 2010, Sam and I celebrated our 16 year anniversary together. This was the first time since we met that we weren't together on our anniversary. Not knowing what Sam's state would be during the week, I had decided not to visit on Wednesday, but instead to talk with her about our anniversary over the weekend. It is thanks to all of our amazing friends that I was able to get through the week and a special thanks to Wendy, who celebrated her 50th birthday on April 28th as well. Wendy gave Sam and I a very special surprise present for our anniversary. She coordinated and gathered over 20 people mostly from our neighborhood, but all who either knew Sam and I before this happened, or have been involved in our lives in some way over the past year and a half. Wendy gathered everyone last Saturday and had them all work on our house, our deck, side garden, back yard, gutters, everything. It was a total makeover for the outside of the house. Everyone was told to bring a plant and had their job to do during the day. I arrived home late Sunday evening and was so overwhelmed by the transformation and the overflowing of flowers, that I couldn't stop crying for awhile. This is what Wendy wanted for her 50th birthday present...to give Sam and I a special place. to come home to. Yesterday, when I saw Sam I couldn't wait to tell her about it all, and right away I started crying again. Sam very lovingly, took my head in her hands and pulled me to her, comforting me. When I got myself together, I then told her I had been very sad during the week, and again, she pulled me close, but this time gave me a big hug. she looked around for a minute and then pointed to the bed and told me to go lie down. She was looking after me. Later that morning, we went and sat outside and enjoyed the beautiful weather before it got to hot. We just quietly held hands. The whole weekend continued in this way, quiet but loving.

Doing Stairs

2010-04-22T20:06:00.002-04:00

Bill called me tonight just to let me know that he saw Sam in the gym this afternoon with the physical therapist and with Meghan the speech therapist. Sam was doing stairs and Meghan was having her count ...1, 2...1, 2 each time she went up and down. Bill said she was doing great and in good spirits. He was impressed and just wanted me to know. This past weekend too was terrific. On Sunday, Sam had her special one-on-one hour long painting class which then rolls into the regular "Inner Art" session which lasts for 2 hours. Sam's stamina was great and she painted 3 beautiful works. Dahalia is having me paint now as well, and in fact it was a lot of fun to be painting alongside Sam. We shared each others palettes a bit and were certainly influenced by each other. Dahalia suggested that we may wish to do a mural together...and both Sam and i thought that was a great idea. When Sam was well, we used to talk about doing joint projects together, as our work was so very different. We thought it might have been fascinating. Now it seems like that may actually happen. On Saturday, I had brought Sam's camera and put it around her neck. Sam's smile lit up the room. She automatically held onto the camera as if it were another limb. It really has always been a part of Sam and so it was nice to see that that has not changed. Sam also had a handmade joke book on her table, and at first she told me that she had made the booklet. I was very impressed, but latter realized that the booklet had been made by her roommate's niece and they had left it there for Sam because she was so enjoying the jokes. Here is one that both of us got a good laugh from:
Q. What happens when you throw a green rock into the red sea? A. It gets wet!

Group Show

2010-04-13T19:38:00.002-04:00

It has been a few weeks since I last blogged and in the interim, Sam has had her ups and downs, with medication adjustments a wonderful visit from her close friend Lisa and one-on-one painting classes with Dahalia in Inner Art. Over the last few weeks Sam has overall been very tired, upset and rather depressed. However with some slight medication adjustments, she seems back on the right track. Sam and I recently got checked off on doing transfer training. This means that I can now take Sam off the premises, take her for drives or even for an overnight at home. I've decided to start out slowly with Sam and so this weekend, which was sunny and beautiful was the first weekend we were able to go out the front door and we went all about the grounds of the facility. It was lovely. Also, over the last couple of weeks, Dahalia has decided that Sam works better without any distractions and so she has special one-on-one sessions with Sam 45 minutes before "Inner Art" class starts. Sam loves the privacy and is doing some nice abstract paintings. Dahalia wanted me to participate this weekend and so with Sam's approval, I painted alongside. Sam really enjoyed having me participate. Dahalia is planning a group show of all the student's work and Sam is excited about it. I think it will be great to see Sam's progression over the last few months and all her work up on the walls. If I keep participating, I too might be in the show.

Photographs and Poetry

2010-03-16T20:27:00.002-04:00

Last week Sam started working with her speech therapist Meghan on writing poetry in relationship to her photographs. Sam had mentioned wanting to do this in her "therapeutic story" and Meghan told me that they had started. Meghan also explained the process, which was that she had asked Sam to pick out about 7 or 8 of her photographs from the box of her work that I had brought in from home. The box contained about 70 photo's all of which Sam had not only taken herself, but had printed up in our bathroom in Brooklyn way back when. After Sam picked out the photo's - she then focused on a couple to look at and talk about. Meghan then recorded and wrote down what Sam said. In the whole box, there were only two photo's of me, and Sam apparently picked one of them out and used it as the first piece to write about. Sam gave her permission again for me to share her poetry on this blog. The first photograph is a picture Sam took of me a long time ago in the Brooklyn Botanical Gardens. The other photograph she wrote about is a picture of two trees, also from the Gardens.

(3/3/2010)
Marcie in the Park _

She sits on a big rock
looking at me
the trees are trembling
the grass is flat
the rock holds her up
the petals are not familiar
with where Marcie is sitting

(3/4/2010)
Window Sill

Two trees
standing still
entry to the trees
we went
fishing

Sam's Story

2010-02-28T18:17:00.002-05:00

"Sam Morris Therapeutic Narrative February 2010" is what I discovered in Sam's binder this weekend. Meghan, her speech therapist would have worked with her on the narrative. I asked Sam if she would share her story with me, and she was happy to do so. Sam read the full page out loud. Afterwards, I asked Sam if I could share part of her story with her friends on this blog site and she said "yes". I am just going to excerpt a few sections from the beginning and the end of her story. It is all very moving and inspirational: "My name is Sam Morris. I am here today to tell a story. A story about myself. I am 48 years old. Last year I had a heart problem that left me with a brain injury. Now I am at the Northeast Center for Special Care in Lake Katrine, NY for rehabilitation. I am working on improving my memory and the way that I process information. Also, my balance has been affected.....Occasionally when I talk I forget to use my voice. I am trying not to whisper, but to talk loud enough for everyone to hear me...... I get tired easily, and sometimes feel overwhelmed. When this happens, I should ask for a break. I can stop and rest whenever I feel the need to..... My goal is to become more independent so that I can go home. I want to be more musical, I want to grow my art and I have thought about writing poetry and am starting a project to write about my photographs. I am getting better every day. I am intelligent and strong and motivated to continue to improve. I have the love and support of all my friends, who are rooting for me everyday. I believe in myself and will work hard and participate in my therapies so that I can get back to it!" It was great to talk with Sam about her story and I love that the therapist works with Sam in this way. Another highlight Saturday morning was that the physical therapist came by and had Sam walk around the entire floor on a low walker. I walked behind Sam the whole way with the wheelchair for when she needed to sit down for a break. She did really well. I have never seen her walk on a low walker before, so it was a real treat. She has definitely gotten much stronger and she stands up straight now, which is also very good. Each time she would sit down to rest I would give her a little kiss on her cheek and she would break into a gigantic smile. It was great. Sam also painted for an hour in Inner Art class that afternoon and she and I just joked around a lot. When I was taking her to the class one of the aides, asked if I was her sister (this is a common question that I get all the time). I told her I was her partner, etc. which was fine. When Sam and I were on the elevator by ourselves I said to Sam "at least she didn't ask if I was your mother". Sam cracked-up at this and at many other such jokes that went back and forth throughout the day. On Sunday morning, I arrived very early, early enough for breakfast for the first time ever and caught Sam finishing-up pancakes, bananas, yogurt and a mighty shake. Wow! that was a lot of food and I was thrilled to see her eating so well. I knew that it was going to be another good day, which it was. Sam was very much Sam on Sunday, meaning that she wanted to look at her camera and to listen to PJ Harvey and just relax. It was truly a lovely weekend.

Feeling Hopeful

2010-02-26T09:24:00.002-05:00

Although not much has changed visibly from last weekend to this one, somehow I feel that Sam's cognition has gone up a notch or two and plateaued for now. The healing and recovery process is VERY slow. It is not hours or days, but rather months and years. One of the neighbors on Sam's unit complemented Sam on Saturday for remembering her name and she, Bridget, told me that Sam was doing well. I later befriended Bridget's sister and had a long conversation about all that they have been through and about the recovery process in general. Bridget is actually doing quite well and is on her way to becoming independent. Bridget has been in rehabilitation one year longer than Sam. Their brain injuries are quite similar, although Sam's is a bit more severe. My conversation however did provide continued hope for the future.
Sam was in a good mood this weekend although she had caught a 24 hour virus earlier in the week that had been making its way through the facility. She joked with me about KD Lang...yes, I brought in a KD Lang tape to play for Sam just because I figured that she would automatically know all the words to all her songs (she did). Sam's humor however came out with the music as she feigned sadness at one of the songs and started rubbing her eyes as if she were crying. - I started to tell Sam that she didn't need to be upset - that it was only a song...and Sam then gave me that mischievous look of hers and started laughing, saying she got me. I also brought in a laptop computer but could not get on the Internet with it. Sam however was fascinated with the computer and all of my attempts to get online. Sam tried to direct me, but I could not quite follow it all. I knew that Sam was trying to tell me what I had to do, but that I just could not figure it out. I will have to bring in a computer for her permanently, as she really perked up when we were playing with it.

Valentines Day

2010-02-15T09:10:00.002-05:00

Last year at this time Sam had just left St. Joseph's hospital after 3 months and had arrived at Mount Sinai's Brain Trauma unit a couple of days earlier. She had not yet started to speak, was still on oxygen and had a trach. I remember picking-up some roses at a cart downstairs from Mount Sinai- knowing at the time it was more for me than for Sam. Sam was not very aware last February 14th, so I can't help but notice the great contrast this year, although it is all relative. Sam and I spent a very loving but quite Valentines day together yesterday. Sam appreciated the card I gave her and even started crying a little bit. The card was made by one of the "neighbors" in a printmaking class at the facility and some of the proceeds go to the individual artist and the rest to the facility. Sam was in her non-speaking mode for the full day and was very sleepy. Although she had her eyes closed, she was aware, unlike last year, and held my hand, kissing and hugging me periodically throughout the day. We just kind of hung out all day. I let Sam pick-out some music for the afternoon and Sam chose a Josephine Baker tape that seemed quite appropriate for Valentines Day. I asked Sam to translate the French songs for me, but she just smiled at me, knowingly. I knew she understood the words but it was just too hard for her to tell me all. I had also brought Sam's large digital camera for her, and she quickly snapped some photo's - rather intuitively, then shut the camera off, put the flash down and handed it back to me. She was not in the mood for picture taking, although what she snapped was pretty good. As always it was hard to leave her when it came time to say goodbye. She was slumped over in her wheelchair out in the large "living-room" type area near the nursing station. I just kissed the back of her neck which was exposed, wishing her a good week. She nodded and raised her hand to wave goodbye, all the time keeping her eyes closed and head slumped.

Care Team Report

2010-02-13T08:49:00.003-05:00

Sam has now been in Rehabilitation programs for one-year. The progress she has made in this time-period is astounding. There is simply no comparison to where she was a year ago at Mount Sinai to where she is now. It has been three months since she has transitioned to the Northeast Center for Special Care and we had our monthly review yesterday afternoon. I received a great report on Sam. The report measured her progress from the month before and on all counts Sam has improved. Most importantly, all the therapists have noticed that she is now able to advocate for herself. It is just a start, but she will at times have strong opinions on various topics; "NO, I do not want to go to therapy today" - the therapists listen to her when she says no; "I need a break" she says in her speech class. These are very good signs. Also, Sam seems to have taken control of her peseveration issues; i.e. her repeating of words and ideas has lessened. She is more in control and is speaking outloud more instead of just mouthing words. Her attention span has also increased- in speech therapy Meghan had been only able to work with her for about 10 minutes at a time and then take a long break, now however, just in the last month, that has increased to 30 minutes at a time. This is very good. In occupational therapy, they have changed her therapist to someone who will solely work with her a few times a day on what is called ADL's- or activities of daily living....putting clothes on, washing your hands/face, eating, etc. They think at this moment that this change will be the most effective for Sam. Her eating still is problematic but they say it is a function of her cognitive levels...when she is more aware she will eat well and recognize the food as food, but when she is less aware, the food is not really identifiable as food, so Sam she will spit it out or be unclear as to what purpose it serves. She loves her mighty shakes, and those keep her weight on, so they are not concerned about her erratic eating behaviors. Also, Sam now attends a "body and mind" class a few days a week, which focuses on breathing exercises and Tai Chi. I was thrilled to hear this since Sam had been taking Tai Chi classes in Chinatown on her own, back when she was well. They will try to work into her scheudle some more painting classes as well as trying out a printmaking and jewerly making class. Overall, the director of the program said that by all reports Sam was making great progress and they were very pleased.

A Great Day

2010-02-01T19:57:00.002-05:00

This weekend started off poorly as Sam was very emotional, crying a lot and said she missed me terribly. Sam just wanted me to take her home and kept asking me to do so. She was also confused and talking about things from her past that seemed to be happening in the present. In stark contrast to Saturday, however, Sunday was the best I have seen Sam- period. I could tell immediately on Sunday morning that she was in a totally different state. When I arrived, Sam was sitting out in the living room area, with a bunch of the other "neighbors" and when I went to greet her and said "Hi Sam" she said "Hi Marcie" back to me which is actually very unusual, because she usually repeats what you say and normally would say "Hi Sam"back. Then very pointedly she asked "How are you? I told her I was doing well and she said "good - I worry about you". This was actually a rare conversation and of course one that showed how much she was thinking and caring about me. It was very touching.
The other neighbors whom I've come to know very well, all came up to me and wanted me to know what Sam did on Friday night. Apparently, after dinner, the physical therapist came by with a special walking machine, and had Sam walk around the whole top floor of the facility. The neighbors told me that they were all amazed at how well Sam did and they were encouraging her to keep going. They said she moved fast and didn't mess-up her footing. I told Sam how proud I was of her and she seemed to be beaming. It was also quite moving that the neighbors all care so much about Sam and are rallying around her wanting to see her do well. Another neighbor, Jonathan, wheeled up to me a little bit later and said that I should record my voice for Sam so that during the week she wouldn't be so lonely and I could encourage her to eat. He said the nurses could play the tape for Sam periodically so that she could just be comforted by my voice. Again, I almost teared up at how concerned Jonathan was for Sam and how much his suggestion made sense. I had brought food with me as usual this weekend and Sam ate everything on Sunday. She even ate all of her lunch which was unusual. Eating is a factor of her awareness level and Sam was the most aware I've seen her. I was also shocked by Sam's short term memory. I had brought the newspaper with me and showed Sam the book review page with Patti Smith and Robert Mapplethorpe on the cover. Later in the day Sam wanted to see some more of the paper, so I took out the book review again (this was about 3 hours later) and Sam said to me..."you already showed this to me ...I want to see something new". - Wow! That was really the first time I've experienced her short-term memory coming back. Later on in the day, I played Annie Lenox's greatest hits and Sam knew almost all the words to all the songs and sang it out loud. Sam was talking and singing clearly all day. What an absolute treat. I didn't want to leave on Sunday night because I was not sure when I would see so much of Sam coming through again. When I did go to say goodbye to Sam, she looked and me and said, "oh, am I coming with you?" ....and as my heart broke and I told her not now sweetie, another time, she seemed okay with that answer. My favorite medication nurse, Michelle gave me a big hug good bye, as she had witnessed both the trouble on Saturday with Sam and then the exact opposite on Sunday. She understood on a very deep level the emotional toll such a weekend takes on a person. There are some amazing people at the Northeast Care Center, and Sam is slowly healing, surrounded by them all.

Taking Each Day as it Comes

2010-01-24T19:13:00.002-05:00

I never do know what to expect when I walk into the NorthEast Care Center every Saturday morning, after taking a very long deep breath before entering. Will Sam be in a good state, or not. How cognitive will she be...will she be talking this weekend or will she be quiet. If she is talking, will she be confused and talking about crazy things or will she be talking clearly. Will she be spitting out all her food and the staff worried about her or will she be content and eating well. Some weekends all of the above occur, while on other occasions, Sam's state leans more in one direction or the other. Patience and faith I am told, that's what this injury is all about for the family members, patience and faith.

This weekend leaned in an overall good direction. One constant for Sam and I is the love we share. When I arrived Sam always gets emotional and Saturday morning was no exception. She hugged me for a long time and then said "I want to hold onto you forever". The rest of the morning however, Sam kept very quiet with her eyes closed. We did have a therapy session with Carolyn, the occupational therapist and so Sam and I worked together for an hour. I was actually very impressed with how strong Sam has gotten and that Carolyn now has Sam doing sit-ups. Sam never was able to do sit-ups when she was well, so this is a fairly major accomplishment. The sit-ups help Sam's trunk control, which is getting much better. Sam and I then went to lunch, where Sam proceeded to spit-up everything she touched. I tried not to get upset and figured tomorrow is another day. Sam and I then proceeded to "Inner Art" class, where Sam was doing well until Dahlia asked everyone if they wanted to work on hearts in preparation for valentines day. Sam said yes, and so Dahlia drew her a heart on the painting she was working on (with Sam's permission)and tried to get Sam to paint inside the heart. Sam became very upset and frustrated and yelled out that she couldn't do it. Dahlia later explained that she was testing Sam a bit with structure to see what level she was working at and was very sorry to have gotten her so upset. She sees that Sam is doing free-form work and needs to continue to do so for awhile. Dahlia was still terrific through it all in the way that she talked with Sam about her emotions and explained the situation to us. Sunday was a better day for Sam. We both sang to the B52's, and Sam asked me to bring her the largest camera in the world. I told her I'd look into that for her. We then looked through the Howard Hibbard book on the MMA's collection together. I started talking to Sam about some of the art works and she said kindly to me "I don't need to know the things I studied and already know" - wow. There is also always a moment of wow on the weekends with Sam and this was it. She really recognized and understood the art, and didn't need me talking to her about it. The fact she could express herself in this way was great. At lunch on Sunday, Sam ate everything and even asked for more. The CNA's also told me a story about Sam that occurred during the week. - Apparently everyone was in the dining room and Shane was making a lot of noise at the back table (Shane can't talk, but manages to vocalize quite well). Sam got disturbed, so she took her sneakers off and threw them at Shane. I was kind of shocked to hear the story, but everyone who told me thought it was quite amusing and I figured that it was a good sign that Sam can take her sneakers off herself, as this is one of the constant tasks performed in occupational therapy. In the afternoon we sat out in the "living-room" area with the football game on the big TV screen. As the "neighbors" started to gather in the living room, much to my amazement, Sam looked and me and said "you can go now.. you can go home". She wasn't happy about saying this, but I could see she was doing it for me. I gave Sam a big hug and told her I'd see her next week.

Update

2010-01-18T08:26:00.002-05:00

Sam spent 1-1/2 hours in "Inner Art" class on Saturday focused the whole time on her acrylic painting. It was the first time that Sam really was looking at the whole page and composition. She was able to ask for what she needed from both the therapist, Dahlia and myself, so for instance she requested the color yellow, and water for her brushes and more different size brushes. It was as if a team of assistants were at her side, helping her creative process all along the way. Towards the end of the class, Dahlia set-aside 15 minutes for everyone to share their work for a critique. Everyone in the class participated and it was quite a wonderful experience. I wish the class were available to Sam everyday, but it is only on weekends. I put Sam's work up in her room, and there is now a nice display of her paintings and of her progress.

Last week I met with all of Sam's therapists and doctors for a conference and overall review. I was told that she is making progress but it is very slow. They spoke about every aspect of her day and broke down each area that needed focusing on. She was upgraded to the next level group speech class because they thought she was getting bored with the one she was currently enrolled. The therapists all work together so well and talk so passionately about Sam that I felt much relieved afterwards, and comforted by the fact that she is truly in the best place imaginable for her injury. They also all love working with Sam and talked about how her humor comes shining through in the classes. The speech therapist Meghan, spoke with me afterwards and said that Sam is terrific to work with and explained in a little more detail as to how she orients her each day and how they do one/on one intensive work.

Yesterday, Wendy and Aileen visited and it really had an impact on Sam, who has been very isolated in the facility, since she only sees me as part of her other life. She really shifted and for the couple of hours that her friends were visiting, Sam and I became a couple again. Sam made sure that I offered Wendy and Aileen the strawberries that she was eating, as if we were playing host in our house to our friends. Sam also became very afficionate with me in front of them and in the old fashioned way we used to interact before her injury. Afterwards, Sam was exhausted by expending so much energy and I think grappling with her two worlds (as am I); her new friends and environment at the facility and then me, and her friends, representing her connection to her other life. Sam needs to see more people from her past, but I understand how difficult it is to journey up to Lake Katrine, Kingston for the day. I could tell she was still grappling with it all when I left, but know that she will manage to handle it well, especially with all the help from the amazing staff at NECSC.

A New Year

2010-01-03T15:58:00.002-05:00

I arrived early on New Year's day and Sam and I were wearing the same rust colored corduroy shirts. We looked like twins and people thought we looked very cute together. It is the last thing Sam and I would ever have wanted to be called "cute", but somehow, on New Year's Day 2010 in the Northeast Care Center, it was okay. All morning out in the main hallway, there was a DJ spinning albums, with the neighbors playing drums and singing into microphones. The neighbors and family members were all there having a great time... including Sam and I. The DJ knew Sam and so asked her for a request....Sam, was unable on her own to come-up with any names, so the DJ handed me a Queen album and said Sam had been singing along the other day to some of the songs...so she should pick one out. I worked with Sam who deferred to me on this (not a great idea), and so I choose the Champions...knowing it would be a good theme song for us all, but one in which, in retrospect, Sam would never have chosen. Sam would have wanted a grittier more ironic song, but so be it. The audience loved the song and that was what the DJ ended on at noon. Feeling inspired, Sam wanted to go paint, but unfortunately Dahlia and "Inner Art" was no where to be found on New Year's Day or the day after. We did take a long stroll around the facility and entertained ourselves with other activities.

New Year's weekend with Sam was lovely and she was in great spirits, which was in stark contrast to the weekend before at Christmas time. It was just wonderful to see Sam hysterical laughing in Occupational Therapy or with me throughout the day. Sam and I played Wii bowling in the clubhouse for a couple of hours and even though I had to help Sam coordinate the pressing of the buttons, swinging her arm and releasing the button all in one motion, Sam loved it. She did manage it herself a few times, but it was not easy. I also raced Sam in her wheelchair down the hall- I would walk fast and she would wheel herself. Sam won every time. We quite amused ourselves and were also in a rather passionate mood. Some of the neighbors are confused as to my relationship to Sam and continually ask me...am I her mother...her sister? They can't figure out why we are kissing so often and why Sam holds onto me so much. Identity politics for the brain injured community is a fascinating topic I'm sure, but I hate that I am in the middle of it. I can't believe that Sam has needed to be confronted with "coming-out" and all related identity issues here in Northeast Care Center. She had to do it at Park Terrace and now, here again. I too have been confronted with these issues of course, first in the hospital/s then Park Terrace and now here. It is quite frankly speaking a royal pain and added burden.

In occupational therapy, the therapist asked Sam and I to do things together, like weight lifting...I realized very quickly that I am totally out of shape and that Sam has much better upper body strength than I do (this was always the case however). One of the activities was holding a one-pound plastic baseball bat, lifting it up and down to hit a beach ball that Sam was throwing at me. We took turns throwing the beach ball at each other and using the bat....Sam had no trouble, while I on the other hand did. We also kicked a big therapy ball around and other such games. I really enjoyed doing these things with Sam and I know she did too. We ended our weekend by watching National Lampoon's European Vacation with Chevy Chase on the TV in the main lounge area near Sam's room. We both laughed out loud as Chevy Chase's character knocked over Stonehenge with his car. It was a good way to wind-up the weekend and start what I hope will be a healing and peaceful New Year.

You Go Girl

2009-12-30T20:52:00.003-05:00

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

2009-12-20T20:07:00.003-05:00

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

2009-12-13T22:12:00.001-05:00

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!

2009-12-06T19:27:00.002-05:00

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

2009-11-27T08:34:00.002-05:00

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!

2009-11-17T19:53:00.000-05:00

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

2009-11-15T19:25:00.000-05:00

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

2009-11-03T07:03:00.000-05:00

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

2009-10-26T20:33:00.000-04:00

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

2009-10-25T20:03:00.000-04:00

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

2009-10-21T21:26:00.000-04:00

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

2009-10-19T21:06:00.000-04:00

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

2009-10-03T18:25:00.000-04:00

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

2009-10-03T08:34:00.000-04:00

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

2009-09-28T20:50:00.000-04:00

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

2009-09-28T09:15:00.000-04:00

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

2009-09-25T21:30:00.000-04:00

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

2009-09-23T08:13:00.000-04:00

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

2009-09-14T21:12:00.000-04:00

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

2009-09-07T09:35:00.000-04:00

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

2009-09-05T09:12:00.000-04:00

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?

2009-09-02T20:36:00.000-04:00

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

2009-08-28T19:01:00.000-04:00

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

2009-08-26T21:19:00.000-04:00

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

2009-08-19T20:17:00.000-04:00

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

2009-08-15T12:19:00.001-04:00

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

2009-08-15T07:53:00.000-04:00

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

2009-08-13T19:13:00.000-04:00

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

2009-08-08T17:04:00.000-04:00

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

2009-08-05T09:24:00.000-04:00

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

2009-08-05T08:53:00.000-04:00

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.

2009-07-26T08:21:00.000-04:00

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

2009-07-24T07:36:00.000-04:00

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

2009-07-19T08:33:00.000-04:00

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

2009-07-17T21:27:00.000-04:00

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

2009-07-16T19:19:00.000-04:00

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

2009-07-13T08:12:00.000-04:00

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

2009-07-12T08:29:00.000-04:00

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

2009-07-08T21:14:00.000-04:00

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

2009-07-06T21:44:00.000-04:00

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

2009-07-01T21:31:00.000-04:00

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

2009-07-01T08:21:00.000-04:00

Picnic in Corona Park

2009-06-29T21:28:00.000-04:00

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

2009-06-27T21:35:00.000-04:00

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

2009-06-24T21:14:00.001-04:00

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

2009-06-22T20:25:00.000-04:00

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?

2009-06-21T19:00:00.001-04:00

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.

2009-06-21T09:19:00.000-04:00

A Saturday

2009-06-21T08:57:00.000-04:00

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

2009-06-20T06:40:00.000-04:00

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

2009-06-17T20:49:00.001-04:00

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

2009-06-16T21:55:00.000-04:00

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

2009-06-14T21:09:00.000-04:00

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

2009-06-12T21:47:00.000-04:00

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

2009-06-09T19:11:00.000-04:00

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.

Transport Care

2009-06-04T17:24:00.000-04:00

It has been less than a week since I last blogged and so much has gone on. Most recently, Sam was sent to the emergency room because she fell and hit her head, trying to get-up out of her wheelchair. Fortunately she is okay, but did suffer a minor concussion. She had also pulled her feeding tube out the same day (yes it is still in!). Sam received a Cat scan at the hospital and everything was fine, although she was throwing-up a bit in the ER. The Dr.'s were not worried about it and said it was a result of the concussion. The following day, the facility needed to send her back to the emergency room because they realized that the hospital had never X-rayed her feeding tube the first time-around, and wanted confirmation that it was in the correct position. Also, Sam had continued to throw-up during the day and they were concerned. When I asked Sam if she pulled out the feeding tube she said "yes". When I asked her why, she said because I don't want any tubes in me". Hard to argue with such common sense. The doctors examined Sam very thoroughly the second night and said that the vomiting was part of her mild concussion and would stop after 24 hrs. - and so it did. The one good thing about spending two nights in a row in the emergency room with Sam is that I can tell that Sam is beginning to speak with much more depth and in full sentences. She is even referencing time-frames which she has never done before. For instance, when the doctor asked her if she remembered when she fell and what time it was, Sam replied - "yes, it was earlier this evening". Wow. - I had never heard her so clearly talk about a distinct time frame and be accurate about it as well. Also, on the second nights' visit to the ER, the transport care worker came over to me and said that his partner had remembered Sam from about 6 weeks ago, and just wanted me to know that he was so pleased to see her progress and that she was both speaking much more clearly and was more aware of what she was saying. He also told me that on the ride over to the hospital (I insisted on them taking her to Mt. Sinai this time, just in case she needed to be admitted), that Sam was talking about me a lot and in the most favorable way. He just wanted to wish us both the best. That alone was worth the visit to the ER. Later the following morning, in talking with the facility about why they were not watching Sam more closely and why her alarmed chair did not prevent her fall.....they told me that Sam is very smart and quick and has figured out the alarm system and she gets up really fast. I suppose I am fortunate to have such a smart girlfriend. The facility has also just moved Sam today out of her room that she has been sharing with three other people and into a room with just one other person. The room is right across from the nursing station, so that they can keep a much closer eye on her. Good.

Chompy

2009-05-30T07:30:00.000-04:00

About a month and a half ago I gave Sam a stuffed animal called Chompy. Chompy is a very cute crocodile. Although Sam has moved away from stuffed animals in the last few weeks she still likes to keep Chompy around as it makes her feel close to me when I am not there with her......or at least this is what she has said. Last night I found Sam in the dining room looking very content and in her upper left hand pocket sat Chompy as if he were a handkerchief. Sam, with her new stylish haircut and Chompy sitting comfortably in her pocket both looked out at me in the most adorable way. Sam just looked fabulous. I know it sounds odd, but at that moment, Sam and Chompy made a lot of sense together and I know it was all of Sam's doing to sit Chompy comfortably in her pocket like that. I was impressed. Sam was in a good state, and we had a nice conversation about religion. Sam said that she had to explain in class that she was not religious nor was she a practicing catholic. However she is spiritual. She said that she didn't think people understood her very well and she felt a bit like an outsider. I'm not 100% sure such discussions take place in her classes, but I will check since normally there is quite a bit of truth to what Sam is remembering and saying. Sam also was flirting with me last night, and I of course responded in kind. "Sam" was very much herself last evening and I was very glad to be there with her.

Progress Report

2009-05-28T20:10:00.000-04:00

Over the last couple of days I've heard from a number of Sam's therapists and had an updated progress report this afternoon. Sam is doing very well in cognitive and speech therapy. In cognitive they are very impressed with how she communicates and asks questions about her brain injury and her ability to retrieve information. In speech therapy, they are impressed with her verbal output (she talks a lot!), and is remembering a lot more. She also is doing quite well in Physical Therapy too. She has been upgraded as of today to solid food and to nectar thickened liquids. Formerly she had been on soft foods and honey thickened liquids. I was hoping for a final upgrade to thin liquids, which is the last step...i.e. water and such, but they are extremely cautious, and so it will likely be another two weeks before this can happen. This means that Sam still has her feeding tube in, since, they need to use it to hydrate her and for additional nutritional supplements. Also, I planned a "family day" in another week or so, and will be able to attend all of Sam's therapy classes and see for myself how the therapists work with her, and how she is responding.

Last night when I visited Sam, she was in good form. She asked me how my day was and I started to actually tell her in detail until I realized that I was going a bit overboard with my answer. I probably should have just said 'fine", but I know that I really wanted to talk with her. She didn't mind my answer, but I'm sure she was not following most of what I was saying. I also talked with her about some of her colleagues at work who sent their best wishes to her and I know that she understood who they were. When I couldn't come up with the name of one of her supervisors husband's name, she did (it was slightly off, but close enough to spark my memory!). I also now have a pass to take Sam out for the day, and so hope that within the next week or so, will have an exciting outdoor adventure.

Sunday Update/Aromatherapy

2009-05-25T08:42:00.000-04:00

Well, just when I'm starting to flag, and my spirits are down, Sam seems to shine through. Yesterday Sam and I spent most of the day looking at her photographs, looking at pictures in magazines and sketching/writing. In the morning I had brought Sam some Iris's that were growing in our yard and which were very beautiful. Sam appreciated them and even their musty perfumed aroma. When we then started looking at her photo's and we came across a picture of a rose that was quite beautiful, Sam turned to me and said "do you want this picture?". It was very touching, since this is how Sam could give me flowers. - I accepted with pleasure. A little later on I asked her how she was feeling, and her answer was "vulnerable"....., "yeah", she said, "I'm feeling vulnerable." Again, it is sometimes remarkable how accurate Sam can be in describing her situation, and even a couple of her therapists have commented on this ability of hers. She once told the recreational therapist that "her circuits weren't connected, but otherwise she was fine." Yesterday too, when she asked if she could come home soon and I told her she needed to stay in rehab. just a little bit longer, she said, "yeah...I'm still shitty with memory...." Amazing how on target again she was and aware of what's wrong. She then asked that I bring in what she called "memory pictures" for her to look at and which could help her with her memory. Also, for the first time yesterday, when I asked her what day it was, she answered correctly..."Sunday"...then, when I asked her the month, much to my surprise, she answered correctly again..."May"..., I then pushed it a bit, and asked her to identify the year, and she started off slowly by saying 2000...something .... and then thought about it for awhile and ended up saying "2008". Sam has always been saying 1999 or 1998, so this too was progress. When Sam was sketching, I asked her if she could write her name and, much to my surprise, she not only wrote her name, but she signed her name in script, both as Sam Morris and then , without any prompting from my end, as Sandra Morris (her official name). Wow! In the afternoon, Wendy and Aileen arrived and brought a variety of herbs from their garden for Sam to identify. It was fun and Sam came close to identifing some of the herbs, but mostly we ended up chewing on the mint and basil leaves and laughing a lot. All in all a very good day.

Saturday Update

2009-05-24T08:24:00.000-04:00

Saturday was a somewhat uneventful day. Sam was relatively content all day, and sometimes that means she is in a more unaware state. Sam's short-term memory was not functioning very well as she repeated herself a bit, but otherwise, Sam and I enjoyed ourselves with a number of simple activities, including watching T.V., reading just a little, and taking a stroll outside in the back "garden" area, which is part of Park Terrace. Sam has been on some new medication since the end of April for memory stimulation, and I'm not sure it is working, in fact I wonder sometimes if it is having the reverse effect, but I will check with her doctors and therapists on Tuesday about it. I've seen Sam both remembering a lot more at times, over the past few weeks but also-mainly- having more difficulty in retrieving words and memories. She also seems too to be in her own world a bit more, but it is hard for me to truly gauge. Today, I'm going to bring Sam a lot of her own photographs to look at and hope that she will be interested in them and in a more aware state.

Dreaming

2009-05-22T20:22:00.000-04:00

When I arrived this afternoon, I found Sam in the Dining Hall, watching T.V. with a few other people. She looked like she had been crying, so I asked her if that was true and she answered in the affirmative. When I asked her if she wanted to tell me why she said "yes"... "I keep thinking I'm dreaming, but I just can't wake up". Leave it to Sam to be so insightful. Of course her comment made me start to tear up as well. I took her into the other room, so we could talk more privately, as Sam was actually crying a lot. She then told me that she had watched the movie that afternoon (they do show "matinees" most days) and she told me that it was a very sad movie and that she got all caught up in it. No one seemed to know what the movie was shown earlier in the day, but according to Sam it was a James Dean type movie. She said it made her think a lot about her family and got her sad. She also said that she did not like the shirt that she had on and could I please take it away from her, as she didn't want to wear it anymore. The shirt had been a gift from her mom, who had visited briefly with her father last weekend. The shirt definitely was not Sam, nor was the shiny running suit that her mom bought for her as well. I asked Sam if she wanted me to take away the running suit too, and she said "yes". Although the idea of "family" usually has good connotations, for Sam this is not the case. Last weekend's visit was traumatic and it seems to have triggered a lot of different emotions and memories for Sam, not all of them good. After dinner, Sam got recouperated and felt better as the evening progressed. By the time I left, she was quite content but exhausted, and ready for a good nights sleep.

Wheelchair Training

2009-05-21T20:56:00.000-04:00

Wheelchair training was actually a lot of fun today. I got to take Sam outside the facility for the very first time and practiced pushing her wheelchair down the street and learning the proper way to cross at the corners. It was really nice to be outside with Sam and the person who did the training, Roger, was a very energetic and funny guy, which helped. I also was able to speak with a number of Sam's therapists directly today and they all had very good things to say about Sam's progress. I also learned from someone who had seen Sam in physical therapy recently that she is "amazing" with her walking. Apparently she can move very quickly and is getting stronger all the time. On the downside today, Sam was having a hard time with her short-term memory. Also, two of the people that I (and Sam) really liked in her room where moved to another floor and in their place where two new patients. Sam's main nurse who has taken great care of her this whole time just left for a two week vacation, so these changes, at least for me are actually very hard to take. Sam was fine with it all so I hope that I will eventually get adjusted as well.

Sam

2009-05-19T19:20:00.000-04:00

Last night, Sam and I had what I would consider our first real conversation. At first, we looked at and read out loud to each other a book of "quotations" with pictures of cats in it. We then talked with each other about what the different sayings meant. Sam then started talking about the moment which she refers to now as her "accident". She said that it must have been hard for me, and how did I feel? I was amazed at this question, since it was the first time Sam has been able to engage in this way. I told her that it was extremely difficult and too hard to even put into words. Sam then said that she had had a lot of questions, but has been able to find the answers. She said she now has clarity and is remembering a lot which is hard, but it is good. She looked right at me and said "I've made my life with you" and started tearing-up. She referred to her tears as "happy" tears. She talked about how much she misses me and how she wants to sleep with me, to cuddle up next to me at night. I told her that we have been sleeping together for the last 15 years, and I miss her terribly as well. Our conversation continued in this way for awhile. She then said that she would like to be able to spend some time looking at her photographs. I told her happily that I will bring some of them in, and talked with her about which ones she wanted to look at. She was very much Sam last night and those few hours with her meant all the world to me.

Not a Straight Line

2009-05-16T07:16:00.000-04:00

In the past week I have seen Sam in many different moods and states of clarity. We had a very emotional Sunday (last week), where Sam was expressing some very deep thoughts and crying and laughing at the same time. The last couple of nights Sam was in a much lighter mood , but not making much sense in what she was trying to talk with me about. I always need to remind myself that the healing process does not happen in a straight line, nor will Sam always appear to be moving forward. Her progress also needs to be seen from some distance, and I am not always able to step far enough away have that clarity. However, I was thrilled last night to see that the nurses no longer are using the "lift" to put Sam in/out of bed. Sam can now transfer from her wheelchair to the bed with an assistant, and so I watched in amazement as this occurred for the first time. Sam was a little wobbly, but it was fantastic to see her on her feet, even for just a moment. I was also informed earlier this week, that in physical therapy, using what is called a tabletop walker, Sam is able to now walk 30 feet. This is fantastic news. She is walking for the first time in 6-months! Also, Sam is itching to get outside of the facility, and I am trying to plan some "day" trips for her. In befriending some of the other family members at the facility, I have been told about a beautiful aviary and petting zoo, with nature walks and waterfalls nearby. Apparently, if I receive the right doctors permissions, and wheel chair training, I can take Sam over to the avairy for a rejuveniating afternoon. I can't wait.

Soon Enough...

2009-05-08T21:54:00.000-04:00

I never know quite what to expect when I visit Sam, but tonight, she was really doing well. It is always hard to describe exactly what "well" means as it is all relative, but this evening, Sam was definitely more alert, playful, talking loudly, and aware. The minute I walked in, she said, "okay, let's go home now", and essentially that was the theme for the evening. She just wanted to be taken home. When I told her that she couldn't go home tonight, but soon enough...she said very defiantly, " Yes I can go home now, let's just go!". She also wanted me to help her get up and then she was going to walk out of there herself. I asked her if she was going stir crazy and of course she said very loudly "Yes". Well, I didn't take Sam home tonight, even though I really wanted to, but as I told Sam.....soon enough.

Holding Court

2009-05-04T21:40:00.000-04:00

When I stepped off the elevator this evening, I did not see Sam in the hallway or in her room. Since dinner was over I didn't think anyone was still in the dining room, but went to check, since there really was no other option as to where she could be. As I got close to the room which from a distance appeared empty, I heard people laughing. As I walked in, and looked to my right, I saw a crowd of nurses and assistants all surrounding Sam. There was no one else in the dining room. Sam was busy gesturing with her hands and talking loudly as they were asking her questions and laughing in a good hearted way to all of her answers. Sam was in her element and was holding court. They told me that she was having a great day, was happy and was remembering a lot. They also said that "as you can see...she has been talking all day! " When the crowd broke up and I took her back to her room, her usual nurse was there and I mentioned what had just occurred in the dining room. She said "yeah...didn't you know....Sam is famous around here." I didn't know, but I was sure happy to hear all about it.

Get the Car

2009-05-02T08:23:00.000-04:00

Sam was in rare form last evening. She was both clear in her thoughts and mischievous as well. The first thing she said when she saw me, was "get the car and lets go home". She said this with great authority. I laughed a bit and told her that we couldn't do that quite yet, but in a few weeks time (I've taken to exaggerating a bit with the time frame...I think perhaps its more for me than for Sam). Sam then said "I know" and then asked me again a few minutes later. She then changed the request a bit and asked if I could get a really big car out front and then "just get out of here". Again I was amused by her clarity and the fact that I too just wanted to scoop her up, put her in a big car and get the hell out of there. She also asked if I could take her outside to see the construction. I stopped to think for a moment and realized that there was an awful lot of construction going on outside. I asked her what in particular she wanted to see and she mentioned the construction across the parkway. I was amazed at this response and realized that Sam, who spends a great part of her day in the main room (for meals and activities) can see the parkway and all sorts of construction projects from out of the window. For her to remember this, is a good sign. I then asked her if she was bored and she laughed and said quite affirmatively "Yes". She also then wanted me to get into bed with her, and this too was quite hard for me to resist. It was certainly an interesting night with Sam. Earlier that day, I had also received some good news informing me that Sam had been upgraded to a "soft" diet from puree. This did not yet mean steak and broccoli, I was told, but rather burritos and such. Although her feeding tube still needs to stay in for awhile longer, this is certainly a step in the right direction.

Get Your Seatbelt On

2009-04-29T21:18:00.000-04:00

When I arrived this evening, Sam was in the hallway outside the nurses station and seemed to be doing a bit better than the day before. When the nurse saw me, she said "Sam" show Marcie your seat belt. Sam didn't really respond, so the nurse walked over and said, Sam...show Marcie how you can get out of your seat belt...finally after a few more requests, Sam showed me her new seat belt and then pulled the seat belt off and a very loud alarm sounded. Okay, that is why the nurse wanted Sam to demonstrate this for me...to show me that she is safely alarmed in her wheelchair. Apparently today, Sam had made a few attempts at getting up out of her wheelchair, and since she is not yet able to walk (she's getting there though), the seat belt is alarmed. Now Sam has an alarmed bed AND an alarmed wheelchair. At least they are being cautious.

Our Anniversary

2009-04-28T21:13:00.000-04:00

Today was our 15 year Anniversary. Last year, when Sam was fine, before this tragedy struck, we had talked about how we were planning on celebrating this day. We were going to have a simple party in our new house and invite all of our closest friends. We new that the magnolia tree in the front yard would be in bloom, along with the cherry blossom trees that line the street. We also new that the lilac bushes and all the tulips would be blossoming as well. It was going to be not only a celebration of 15 years together, but really a celebration of Springtime as well, with all of its' inherent meaning. This morning when I left the house, the yard was even more beautiful than either one of us could have ever imagined. It was tough walking down the steps by myself. In an attempt to celebrate in a small way this afternoon with Sam, I bought two fuchsia colored plastic champagne glasses along with some flowers to Park Terrace. I was trying in my mind to think of today as just another day, but of course it was not. I also had hoped that Sam would be having a good day, but unfortunately, she was not. Sam spent the evening talking about a lot of crazy things which made the evening that much more difficult. There were some funny moments however, like when we were having dinner, and I poured Sam's orange honey thickened liquid into her champagne glass and then poured my Odwalla Blueberry drink into mine, toasted each other and then took a sip....Sam said "this is not Champagne...what is this?" Before I left we both did talk about how much we loved each other, but that is something we do every night. Today was just another day of rehabilitation for Sam, part of the ups and downs. For me however, it was a lot more.

"Are" Book

2009-04-25T20:03:00.001-04:00

Sam was having a very good day today and she never ceases to amaze me. We were watching a cooking show on T.V., and Sam asked for a pen and paper so she could write down a recipe. Unfortunately the TV show did not provide the recipe she wanted, but since she had the pen and paper in hand, she wrote down "Sam and Marcie" on the page instead. I couldn't believe it....all of a sudden she can write and spell words clearly. I asked her when she started being able to write and she said she's been working on it, and pointed to her head with a sly smile. Typical Sam. She then wrote down "Are Book" and told me it will be "our book", that she wants to work on. I explained to her that "are" and "our" are slightly different words but sound similar, and I believe she understood. The slight misspelling however, did not negate her amazing feat. We then watched a show on alternate energy about cars, and I know that she understood the content of the show much better than I did. I still wanted to see her write some more words down, so I asked if she could write out the last form of energy we just heard about...which was "cellulose". She said "okay" and wrote down "cellulose". Just fantastic. Also, right before dinner, she asked me if I wanted to go out to a nice restaurant tonight. She thought it might be a good change and then we could have a nice atmosphere where we could talk. Again I was amazed. I told her of course that I would love nothing better than to go out to a nice restaurant with her, but that we just had to wait a little bit longer until that could happen. There are days when a light shines in, and I feel hopeful about Sam's recovery and about our future together. Today was one of those special days.

Two Wishes

2009-04-24T21:01:00.000-04:00

Sam greeted me this afternoon with a huge smile and a big hug. She was watching Deal or No Deal on TV and was fascinated by all the money and excitement of the show, but had no idea what it was about. I too have seen the show and can confess that I have no idea what it is about. However, the show made Sam want to talk about what she would do if she had a million dollars and being Sam, she said simply that she would help the world and would give money to those in need. The world seemed to be on her mind, but she turned to me this time. She told me that if she could, she would give me the world. She wanted me to have everything she told me. Immediately the conversation turned to how we feel about each other, and with both of us in tears, Sam told me that she had two wishes; one was for each of us to have a good healthy, independent life and the other was for us to have a good life together. We talked about this in more detail, and then were interrupted when Sam's dinner arrived. The discussion changed a bit and Sam began to talk about some things that I didn't quite understand. But then, out of the blue she said that she wished there was a spiritual pill she could take. What a brilliant idea. If only such a pill existed and Sam had a milliion dollars, the world would certainly be a better place.

Getting Back to Work

2009-04-23T19:53:00.000-04:00

Over the last few days, Sam has been having some very clear moments and then some not so clear. She has always had many varied interests and would read everything in sight. All of this information seems to be coming back to her, but often times the important connections seem to be missing. She also talks about some crazy things at times, and in many instances I kinda understand where she is coming from, but only to a certain point. Some of the scenarios she tells me however are really quite funny. The other night, when I told her to get some rest, she said, "how can I rest, I have to practice for my performances." I said.."you are performing? What are you doing? " She said, "yes" I am performing for the African Nation of Mombazza" "you are" I said...what are you doing for them..? "Well, its for the children... I'm helping to educate them"...and so the story went. Sam also now thinks she needs to get back to work, as quickly as possible "I haven't worked in a long time". She then said that she needed to "deliver some important papers" to Emily.. "I have to put this in her mail for the evening" she told me, trying to get out of her wheel chair. I told her not to worry, that it was the weekend and she didn't need to work on the weekend. This did not satisfy Sam who said "we're development people..you know we need to work all the time" She then seemed to need to deliver some things to Philippe. The only way I was able to calm her down and dissuade her was that I made up a story about running into Philippe on the elevator..." and he told me to tell you that he was going out of town for awhile, so you don't need to drop off the papers right now as he doesn't need them right away". - This seemed to work. In all of these discussions with her, I realized of course that she strongly identifies with the Metropolitan Museum, which of course makes sense, since she has worked at the Met for over 19 years. It is good that she remembers parts of her job and most of the people she has worked with...it is not good of course that in the Rehabilitation Facility she thinks she can walk out of her wheel chair to deliver papers to Philippe and Emily.
She also was insisting for awhile that I take her upstairs to her office. She needed to get to her desk. She was so insistent in fact that I went out to the nurses station to ask what was upstairs and if Sam would have ever been there. The Nurse said no- it is just the same as the other floors and no reason Sam would have been there. I then realized that Sam must have been thinking that we were at the museum and therefore we would have been in my office and Sam's Office was just upstairs..."Marcie just take me upstairs to my office" It kinda made sense, but it is hard to figure out sometimes. Sam definitely thinks she needs to get back to work, and overall, I think that is a good sign.

Alarmed Beds and Comic Relief

2009-04-18T18:41:00.000-04:00

As Sam becomes more aware, she thinks she can do things that she actually, physically can not, such as walk. This morning the nurses found Sam on the floor next to her bed. Fortunately she hadn't hurt herself and was fine, but they now have alarmed her bed and put mats down on both sides in case she falls out of bed again. This is, I am sure a good sign, but yet it is something else that I will be worried and concerned about for awhile. When I arrived this morning, Sam was in a very active and alert mood and we had a very good day together. There was a bit of comic relief when I overheard her roommate and her talking. Her roommate asked her how she was doing and Sam said she had an bad allergy. Her roommate said, "what , you have a bad attitude?" and Sam said ...ahh, yes I guess I do. Her roommate then said "I do too..." and they both continued this way for awhile. Later on, Kathy, her roommate said that Sam and she had met a long time ago. Sam said "yeah, I think it was when I was around 21 years old or so." Her roommate agreed. I then piped up and said that was not possible, and her roommate said, "well between my brain and Sam's we don't now what the hell is going on". Perhaps I was overtired, but I just was laughing out loud for half the afternoon listening to the two of them go back and forth. It was much needed relief.

Progress Report

2009-04-18T07:06:00.000-04:00

I received an excellent progress report on Sam yesterday afternoon from the facility. Apparently Sam is the "darling" of the facility and has charmed everyone who comes in contact with her. In physical therapy they reported that Sam is doing what is called step level 1. She is working out on a kind of step/bicycle machine. She had in the past needed constant attention on the machine, but now happily does it on her own. Her retropulsing is receding and slowly going away. In occupational therapy, she is now intentionally reaching for objects which is a very good improvement. She has been upgraded in her cognitive class from the "arousal awareness group" to the "reasoning group". Overall, all of the therapist agreed that she is less restless, less distractable, and showing more appropriateness. They too have seen that she is much more emotional, crying a lot and I was told that this is a very good sign. They now have a neuropsychologist working with her a couple of days a week as well. In terms of her swallowing, she is able to take her medicine by mouth and is eating 3 pureed meals a day. They still need to get her to eat solid foods and thinning liquids, check her nutritional counts and then, finally they will be able to remove the g -tube. It still might be a couple of weeks away, but we she is getting much closer to that goal.

Getting Better, Getting Worse

2009-04-16T19:20:00.000-04:00

As one of the nurses told me awhile ago, when patients start getting better, i.e. more aware of their situations and surroundings, they start getting worse. I believe this is what is now happening with Sam. She has become a bit more aware and therefore is having a tough time with where she is, what is happening and what has happened to her. She is definitely scared and asking all sorts of tough questions, that don't seem to have answers to them. It is hard for me to see her struggling in this way, but I need to keep in mind that this is what progress looks like.

Easter Sunday

2009-04-12T18:00:00.000-04:00

This morning when I arrived at Park Terrace, I found Sam in the dining room, parked in front of the large screen T.V. watching a priest talk about the meaning of Easter. The T.V.'s are always extremely loud, and this morning was no exception. I took Sam into her room where it was nice and quiet, and she already had a lot on her mind and needed to talk. The subject today though was God, spirituality, Catholicism, Judaism and that was just the beginning. Sam was extremely emotional and was struggling with what has happened to her, the meaning of life and God. She talked about feeling helpless and through her tears told me that she loves God and wanted to go to Church to pray. This is the new Sam speaking and it will take me awhile to adjust and to get to know and understand this newly emerging person. Sam was also struggling with the fact that I am Jewish and she is Catholic, and I finally came to understand that to her this meant I would not want to go into a Catholic Church with her to pray. In trying to comfort Sam I told her first that we could pray right where we were, in her room (this of course is the Jew in me, the nomad, running, praying and making a "temple" wherever you happen to end up). Sam liked this idea. I also told her that I would try to find a person of God to come listen to her, so she could have some spiritual guidance. She also liked this idea as well. Sam then started talking about how much she loved me and that her love for me was forever and very real. She repeated this to me in many different ways, over the course of an hour or so. We both managed to go through an entire box of tissues until we were interrupted by the nurse. Afterwards, I tried to change the subject with Sam, but not before she asked if I would give her the shirt I was wearing so that she could hold onto it when I wasn't there. I understood this sentiment exactly since I actually felt comforted by wearing her shirts when Sam was in the ICU and stepdown in the hospital. There are many reasons why we are together and so much in love. I did finally get her looking at the B&H catalogue and talking about photography. I also got her sketch pad out and the New York Times and the afternoon took a lighter turn. I will talk with her doctors tomorrow however, just to alert them to the fact that Sam's emotions are truly deepening. I am usually the first person to see this happening and it is helpful for all those working with Sam to know what she is experiencing, so they can better help her get through it.

Consistency

2009-04-12T07:38:00.000-04:00

Sam has definitely reached another level in her recovery. She has become slightly more aware and consistent in her knowledge of her surroundings and people. She seems to be trying to leave the "young/kid" Sam behind, although that person does still crop up periodically. She handed me her stuffed animal yesterday afternoon and told me that these are for kids. She doesn't want it anymore. During yesterday's visit, Sam was looking great and had lots of thoughts on various topics. She is still interested in talking about her photography projects, but it is very difficult for Sam to express herself verbally in the way she wishes. She was thinking about all sorts of things, but when she tries to communicate it to us, it does not always come out the way she wants it to. Sam is aware of this which is a good sign. Wendy and Aileen brought Sam the B&H catalogue she had been wanting to look at and also a small camera to play with. Sam right away was able to pick-up the camera and appeared quite comfortable handling it and trying to take pictures. She also seemed to enjoy looking at the catalogue. Also, it is interesting how easily we all fall back into certain patterns. There was a wonderful/funny moment when I went to look for some money in my bag to give to Wendy and I didn't seem to have enough cash on me for what was needed, so Sam right away said, -- "do you need some money?" . This was how our relationship used to be.... me never having quite enough cash on hand at any given time, but knowing that Sam always did, so she would give me a twenty to cover whatever it was at that moment that needed to be covered. Also yesterday, very strikingly, Sam's emotions have deepened and become stronger. Sam and I had a long talk again yesterday afternoon after Wendy and Aileen left and she told me how much she misses me and how difficult it is for her, especially at night. I shared the same sentiment with her. She was crying a lot, but would then get herself together. She was still upset, when I went to leave, even though I assured her I would see her in the morning. She seemed to really understand all of this when we kissed goodnight.

The Weeks Overview

2009-04-11T08:04:00.000-04:00

On Monday evening (really Tuesday early morning), Sam and I were back in the emergency room having her feeding tube replaced once again. The emergency room doctors and nurses recognized us, and in fact one of the doctors who had helped us the last time around (about two weeks before) commented on how well Sam was doing and how much better she seemed. It was only a 3-hour visit this time- the shortest imaginable for an ER visit, and Sam was actually very calm and more aware of things than in the past. When we returned to the facility early on Tuesday morning, I again complained about this situation in particular and the doctors ended up re-evaluating Sam later in the day and now she is having three meals a day. However, she still has the feeding tube in, as it is a long process to wean someone off properly and safely.

One thing that I have noticed this week is that overall Sam is consistently more "there". It is very hard to describe exactly what that means, but it is a slight positive shift. Last night Sam talked about photo projects that she wants to do, and asked for the B&H catalogue (I had previously asked her if she wanted to see the B&H catalogue but was thrilled that she brought it up this time) . I believe Sam was inspired by one of the many cards that people have been sending in to her which had three photographs on one page of a newborn baby. After looking at the card, she asked if we could take pictures of our daily lives, and then "print" them on one page...maybe 6 to a page. I asked her if she meant that she wanted to document her daily activities and the people around her and she said "yes"..."exactly". She wants me to do the same at work. Sam did not describe this project as clearly as I am writing it down now, but after a back-and forth with her, this is what she was thinking. She then came up with many other project ideas - typical Sam- and I decided to keep a journal of her art project ideas, for when perhaps she can truly carry them-out. She very much approved of my jotting down her ideas in a notebook and then referencing them later on. She even noted that the projects were not something that was "durable/doable" at the moment, but maybe later. I was thrilled that she seemed to grasp the concept of "later" . I look forward to seeing her this weekend and seeing if she revisits any of her photo ideas. When I left her last evening, she was still thinking about new photo projects.

Becoming More Aware

2009-04-06T13:46:00.000-04:00

Sam was in a very serious and emotional mood yesterday. She wanted to talk with me in the afternoon and started by telling me that she just wanted to go away for a little while and think about things then she'd come back. She feels very odd, she said,....things are not quite connecting, there are gaps....something is not right. She just needs a break. It's really hard for her, there is something unusual going on.... I have talked with her in the past about what happened to her and did so again yesterday, but Sam continued...I feel kind of drained, I don't know what else to do ...and then in truly typical Sam fashion, she said that "I'll take a break for a little bit and then I'll come up with a solution". Yesterday was a very emotional day for both of us, as we were engaged in this type discussion for many hours, talking and crying together. I tried explaining to Sam that she was doing really well, had already made great progress and just needed more time to heal. I told her that she was doing everything that she could at the moment and that she was truly amazing. Sam then went on to tell me how much she trusts me, that I was her best friend and that she loves me very much. She also asked what she could do to help me. A couple of times the nurses came in and I had to tell them that we were in the middle of a very intense conversation. They of course picked-up right away and let us be. Sam also talked with me about how alone she feels and I tried to comfort her. After awhile, we both were emotionally drained, but feeling better. We agreed to have more such talks in the future and in the back of my mind I knew that this discussion, Sam's awareness, was a good sign. When I left Sam and I flexed our biceps at each other showing how strong we are and with a smile and some kisses, we wished each other a good night.

Cornflakes

2009-04-04T20:37:00.000-04:00

Today was another good Saturday for Sam. She wasn't as clear as last week, but she was alert talkative and responsive. A number of times she surprised me with her quick sharp wit. For example, I was talking with her a little bit about our computer at home and how I wished she were there to help me because I really didn't know how to do certain things like download photo's from our camera. Sam was always the computer wizard, not me. Without missing a beat, she looked straight at me, pointed her finger at me and said "practice". We were also watching a French cooking show on TV, and out of the blue she said "oh..they usually have Julia Child on this show". I don't believe that was correct, but nonetheless, it was pretty sharp of her to associate French cooking with Julia Child. And, most impressively, later in the day, I had given Sam a pad and pencil for sketching and after a little bit I saw that she had actually written a few letters out for the first time. The letters were "cor" . I asked Sam if she were trying to write anything in particular and she said yes..."cornflakes". Well, I'm not sure why she wanted to write cornflakes, but I was pretty impressed. She never did finish writing the word out, but I thought it was quite amazing. Writing is extremely difficult for someone in Sam's condition, so even writing those few letters out correctly was truly an impressive feat.

Good and Bad

2009-04-02T22:06:00.000-04:00

Twice a month I get a report from all of Sam's therapists about her progress. Today, I received the report and the good news was that her cognitive focus has gotten better, her overall speech has improved and her sitting balance is better as well. They also told me that in physical therapy she is "retro pulsing" . The way they told me didn't sound good, so of course I asked for an explanation of what that meant. Apparently, when they have Sam up on her feet, instead of walking forward, she walks backwards. At first I thought it was kinda funny that she was moving backwards, because Sam has always been unique. However, they explained that it was not uncommon with certain brain injuries for this to occur, and that they hoped to be able to work with her over time, so that she will be able to walk forward. To me, any walking was good news. Overall, it was actually a good two-week update.
Tonight however when I went to visit Sam, it was the young kid-like Sam that I encountered. Despite the fact that she was wide awake and talking up a storm. which is a good thing, .....most of what she was saying did not make sense, and what did was very odd. She also was putting everything in her reach into her mouth, and was extremely fidgety. I know that the evening visits can be hard sometimes, and tonight was exhausting watching her do these peculiar things. It is at times like these that I need to reach back and remember the really good days, such as this past Saturday, where there was real hope for better times ahead.

Sweetest Smile

2009-03-30T20:32:00.000-04:00

Tonight was a lovely visit with Sam. When I arrived, she was sleeping. I kissed her gently on her cheek and told her I was there and would sit with her for a little bit. With her eyes still closed, she gave me the sweetest Sam smile that just melted my heart. After a little bit, Sam opened her eyes and looked right at me and we just started talking quietly for awhile. Neither one of us said much, but it was truly lovely. She asked about our cats and said she was worried about me. I liked hearing that she was worried about me, mainly because it meant that she was becoming more aware of things. After a while, she asked me when I was going to get some sleep, and I got the gentle hint..... I asked her if she was going to bed the minute I left and she said yes. I said goodnight soon afterwards and kissed her again on her cheek.

First Meal Together

2009-03-28T20:07:00.000-04:00

Today, Sam was really doing well. She was very clear in her speech and her voice is definitely getting stronger. The most exciting moment of the day came when the nurse brought in Sam's lunch. I have not seen her eat since November 14th, 2008. I thought too , that I would need to help feed Sam, but to my great surprise, Sam just picked up the spoon by herself and starting eating. She asked if I wanted to try some, and so I thought why not. The food was actually really good. She had pureed chicken with a little sauce, an asparagus and pea mixture and then grits (I think). Wendy and Aileen happened to arrive at lunch time and they had brought me a sandwich. Together, Sam and I for the first time in our "new" lives together, had lunch. It was really nice. It also was great to see Sam's huge appetite and I am sure it won't be long before the feeding tube is removed. Also, today was special for a different reason. Sam seemed to be a little more "there". Hard to describe it exactly, except that she was definitely thinking about lots of things and trying to ask lots of complicated questions. It gave me a renewed glimmer of hope, since it seemed like a slight shift had occurred. There are still the moments of course, when the nurse takes Sam out of the room for about 5 minutes and then when she returns, Sam thinks that we have all just arrived and is not aware that we had been together with her for the past few hours. It is this short term, as well as her long-term memory that is the focus of much of her therapies and of course the main reason she is at the facility. But there was definitely hope today, a slight shift forward in a long and uncertain road towards recovery.