Picnic in Corona Park

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

Queens Zoo

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

Standing Tall

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

Dancing and Singing

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

Is It Me?

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

A Saturday

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

A Long Day

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

Karaoke

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

Attitude

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

Weekend Update

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

Two Steps Forward, One Back

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

Up/Down/Good/Bad

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

Transport Care

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.