Using the Memory Book

Wednesday 5 December 2001
(NOTES):
More entries by Brian are being made in the Memory Book pages. Today he notes that he "worked with Memory Book", and "Dressed and Shaved". This was the first time he had shaved. His hair is getting long; it is red and curly!
Brian played piano and basketball during PT in the morning, and horseshoes in the afternoon. During his combination PT/OT, he found the Outpatient Therapy rooms downstairs, using directions he wrote himself. He will be doing therapy in those rooms once he is released.
This afternoon was another "Show N Tell" session, during which Brian once again "wowed" everyone. 
Marshall and Kellie visited, 5-7 pm.
Mom read at night.

The Memory Book page for today

Click on the image to enlarge

Outside

Tuesday 4 December 2001
(FROM NOTES):
Today's big event was Brian going outside and to the cafeteria, with Marcy and Amy! We watched him outside, leading the way.
With Julie he is doing a lot of worksheets (Speech and Language) for concentration, handwriting, language use. It is hard for Brian to sit and focus on a worksheet.
Brian's memory Book/Journal is being used to help him remember what he is doing from day to day, and who visits.
Marshall and Kellie visited as usual, from five to seven.
Mom read to Brian at night. We are on Harry Potter still.

Off the Unit

Monday 3 December 2001
FROM NOTES/SCHEDULE:
(These entries are sketchy because during this week there was a court hearing regarding guardianship, and I was not at the hospital as much as I used to be).
Brian took a shower, got dressed, brushed his teeth, did his hair today, during Occupational Therapy. The staff is working on increasing independent life skills for when Brian goes home. 
With Amy during PT, Brian walked off the Unit for the first time, going down the elevator. It was very exciting to watch! He played Uno and Hi-Q later in the day; games are good for concentration.
In the evening, Marshall visited.
I read to Brian at night.

Brian Jeopardy

Sunday 2 December 2001
(FROM NOTES/SCHEDULE):
Brian spent the day with Dave. At breakfast they created the "No more questions" rule, which led into the new game of "Brian Jeopardy". They worked on this game until lunch, writing the whole thing on a sheet of paper and posting it on Brian's bulletin board so anyone can play. It goes like this: "Heart Attack for $500". Answer: Risa, Jessica, Evan, Max, Joel, Duncan. The question for Brian: "Who was there when I had my heart attack?" Categories are: Heart Attack, Coma, Girlfriend, People To People, and About Me. It's a great memory game!
In the afternoon, Dave and Brian did homework. While reading it, Brian returned to the "left neglect", until he was prompted by blocking all but the first word.
(Brian at first could not see what was in the left side of what he was looking at. For example, if you held up your two hands with fingers up, with him looking at you, he could only see your right hand, which was in his left field. When reading, he would only see the right side of the page. If you held up a two-digit number on a card, he only saw the ones column.)
Brian had dinner with other rehab patients.
I started reading Harry Potter and The Sorcerer's Stone to Brian.

Brian's Jeopardy

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A Day With Dave

Saturday 1 December 2001
FROM MY NOTES (from B's schedule):
Dave spent the day with Brian. I stayed in Ashland, making phone calls and walking. I talked to Robin, Tony Henthorn, John Linton, and Zak of The Greenman. All sent love and best wishes to Brian! Dave's friend George, too!
(I was beginning my search for a place for Dave and I to live in town, too)
Dave and Brian had breakfast together together, and worked on remembering what Brian ate to write in the Journal. According to the Journal, during Brian's ST sessions with Maria-Mercedes, he "talked and wrote Colombia" and did puzzles with Maria (puzzles/mazes on paper, following lines with colored pens and matching shapes). Brian also worked on these with Dave. (Maria-Mercedes was from Colombia)
Brian had PT with Sharla, with whom he waltzed (?!) and walked in the hall tossing a beachball. He was finishing the latter when I called Dave, and I got to talk to Brian on the phone! He asked me the usual remembering questions, said "I love you, Mom", and was off.
Brian had lunch  with Dave, and brad from school. Dave cut the visit short, because seemed a bit fragmented and tired. After lunch, Dave once again helped Brian work on remembering what he ate. Brian got weighed : 150 pounds.Dave left Brian alone a bit, to work on his puzzle homework, but it didn't work very well: Brian was having trouble concentrating all day.
During OT with Erin, Brian was very tired and lost at checkers. Dave left Brian alone a while, in bed, but Brian never did nap. 
They talked about sex a bit, with Brian asking, "Am I a virgin?" Dave said, "I know you are," and Brian responded, "Yeah, I'm a shy guy." He believes orgasms are the most intimate expression between two people. 
David Voeller and Randy Fitzpatrick visited. Randy had a difficult time with Brian's perseveration, and said, "This is the hardest part ever. I don't know if I can do this."
Emily Robbins and her mom, Bonny, visited into dinnertime. Marshall was there for dinner; it was his birthday. Dave set up Brian's December calendar on the wall next to his bed. 
I was with Brian from a bit after seven, until nearly ten. He was a bit agitated, and focused on the themes of Alana and how long he'd been in a coma and in the hospital. Mostly we talked about the latter. When I told him he'd been in the hospital eight weeks ("How long ago did I have my heart attack?") he wanted to know what he'd been doing since he woke up ("What have I been doing for 5 weeks? Why am I still in the hospital?") I explained that it has taken a long time to recover from the coma, and that he  is still recovering. Another question was, "Did you think I was going to die?" I replied that yes, I was afraid he might, at first. 
We walked several laps around the Unit, and, though he was tired, his gait was more even, he could talk and walk some, and his steps were longer. 
We got to bed about 9-9:15. I read him to sleep, finishing Looking Glass. he was very calm for the last 45 minutes.

We Walk With Brian

Friday 30 November 2001
FROM MY NOTES:
There were no early morning calls today, but Brian DID wake up at 5 am.
I arrived about 8:15 and Brian was finished eating. He had gotten his breakfast first, and was nearly done with his cocoa. He and I worked on remembering what he ate, for his Journal (one of the things ST Julie wants us to work on).
Brian had a shower at 8:30, walking there and back again with CNA Megan (Certified Nursing Assistant; CNA's work directly with the patients, while the nurses administer meds and run the floor). He was dressed in hospital pj's when he returned, because he was going to get dressed during OT. He got to sit in a regular chair in the room with me when he returned!
During OT with Erin, Brian picked out his own clothes, got dressed, and brushed his teeth and hair. His hair is very curly!
Brian had PT with Susan at 10 am. She was amazed at his improvement since she last worked with him, earlier in the week. They walked to and from the gym; Brian worked on balance exercises on the mat and standing. Between 10:30 and noon, Brian worked on his ST homework, and finished it perfectly. I found that leaving him alone worked best for keeping him on task. I went to the Dining Room and did my own "homework", letting Brian know where I was.
All day long, Brian wanted to WALK! I helped him stand up to pee and shit. (rolled to the toilet, I closed the curtain, he did everything on his own, I stood nearby, ready to help) (I remember when we first visited the Unit and I saw the toilet set-up, I wondered how long it would be before Brian would be able to use it.) Brian is wearing only his boxers now - no more diapers! This happened a couple days ago.
Brian and I ate lunch together. Dave couldn't make it because he was at our home, shoveling 2+ feet of snow off the trailer roof. He had gone home Thursday evening, to check on things, and more snow fell. He arrived after 1 pm.
After lunch, Brian and I worked on remembering what he ate again, for the Journal. "Why are we doing this?" he wanted to know. I explained that it was practice to get his short-term memory working right again.
At 1 pm, Brian had his combination PT/OT session with Amy and Erin. he worked on soccer ball kicking; played volleyball with the beachball; and started a game of checkers with Erin, which he was winning. 
Dave and I gave him some time alone, while we talked.
During his next OT session, he played checkers with Erin again.
At the 3:30 PT session with Amy, Dave And I learned how to walk with Brian, by staying behind/beside him, hand near his back, keeping him focused, not conversing because it's distracting. We also learned how to walk up and down stairs, and how to catch him if he starts to fall. All these activities are done with Brian wearing a wide, white canvas "gate belt", which is used to help him if he loses his balance and/or starts to fall. Amy also taught Brian how to get up. The Rules were discussed, and written out by me, to be put up on the wall next to Brian's bed, and in his Journal. He can only stand with an adult, must be wearing shoes and the gate belt, and can only walk with a parent or a staff member (after training). Now, we have to impress upon Brian that the Rules must be followed, for his own safety! He needs to be watched and reminded constantly. From four to five, we worked on using the Journal for Remembering, looked at pictures, and talked about his friends and their passions (Dave's idea). Marc was the only described as having a passion: playing piano. Brian's passion is drawing: "I love to draw!" Describing his friend Chris: " He's really smart and he's a dork." (Chris has a reputation for this; he is also a sweetheart).
Vanessa Dudley and Ahsa arrived about 4:50. I walked with Brian to show them, and they joined Dave, Brian and I for dinner (they had already eaten). Dave got Chinese food for he and I and brought it in. We had a laughing good meal. Ahsa is very calm and intuitive with Brian, careful about not talking to him when someone else is, and directing him to use the Remembering Journal. After dinner, we all worked with the Journal and looked at Europe photos. The girls left at 6:15 pm.
Dave walked with Brian a bit, as did I. Brian and Dave visited June briefly.
We got Brian into bed around 7:30, because he was tired, disjointed, getting wobbly. We had spent some time looking at art books I brought in - Vermeer paintings, Van Gogh sketchbooks - and Brian asked, "Are you guys showing me these because you think I could be a professional artist?" We told him "Yes!" and he was thrilled, kept thanking us. He said he liked using colored pencils the most, and "can't paint". Dave suggested he not say he "can't", that there is time to practice. Brian continued on the theme of "Do you really think I can be a professional artist?" for the rest of the evening. He was especially amazed that we thought he could be one if he only did pencil drawings. Dave engaged him in describing the self-portrait with the skull, which Brian did not describe as a self-portrait, but as something that "came out of my head". He was able to describe the basic process of drawing the picture, but not any of the emotions. The self-portrait the cards were made from elicited a description of the look on his face that appeared accurate: " Angry and confused". He also commented that he doesn't have a "6-pack" like indicated in the drawing, then explained to us that "6-pack" refers to well-developed abdominal muscles. 
In the morning, I met with Janet Murphy, who reported that, as a result of their staffing Thursday morning, it has been determined that Brian MIGHT be released on December 11th! This necessitates a family meeting as soon as possible; Dave and I will meet with Marshall, Janet and Shelley on Wednesday afternoon at 1 pm. We will discuss discharge plans and try to work out arrangements with Marshall and Kellie (Kellie will not be available for the meeting). The re-hab team wants Dave and I to continue our work with Brian, and Janet told me there is a possibility Dave and I could be paid by Medicaid to be Brian's caregivers. Everyone thinks we are doing a great job.
Even though Brian was very tired, he was still awake when I had to quit reading at 8:30 pm. I left him peaceful.

The Question of Driving

Thursday 29 November 2001
I got another early morning call, but this time I thought I would see if Brian could go back to sleep. I was called at 3:45 am and he had been awake for less than an hour. My intuition was correct; Brian fell back to sleep. I had suspected that if I left him alone to entertain himself and answer his questions on his own with his Journal, he might get tired instead of distracted. I was correct.
FROM MY NOTES:
Dave was on morning duty. He had breakfast with Brian, and was going to help Brian dress but was told that dressing was part of morning OT. During OT, Marcy "helped" Brian get dressed, brush his teeth and spike his hair (Brian did it all). He also started his laundry.
At one point in the morning, while Brian was in his wheelchair, Dave turned his back and Brian stood up (his seat belt was undone) and started walking. Amy rushed over and reminded Brian that he isn't supposed to walk alone, but with her. "You're right here!" he said. "But I was over there," she replied. Brian just gave her "The Look": raised brow, lowered head, looking out at her from under the brow.
During his combination OT/PT with Marcy and Amy, Brian played horseshoes and beat Marcy 11-4.
Brian had lunch with Dave, after spending some time alone so he could focus on his writing.
I arrived at 1 pm.
Brian worked on writing with Julie, who gave him some worksheets to complete for maria Mercedes on Saturday (homework!). Brian does not have ST on Fridays.
Brian had OT with Marcy again at 1:30. He shaved, put his laundry away, and even hung up some of his shirts.
During PT with Amy, Brian did a Balance Test in preparation for walking with staff and parents. He scored 49/56, meaning he has a slight risk of falling. Distractions are his biggest problem, although his feet tangle occasionally due to the pigeon-toed gait. He should be able to start walking with others on Friday.
After PT I tried to get him to work on some homework, but he was tired an distracted, so I had him lie down and I left him to rest alone. I thought he might sleep, but he didn't. 
At 4 pm Brian had another PT session with Amy. He is having trouble remembering her name and keeps calling her "Kate". They walked to the gym to work, with Brian leading the way. Brian did various types of leg lifts, with the "magic number" being 18 because he will soon be 18. When they finished, we all discussed the driver's license issue, because Brian has been asking, "Do I have a driver's license? Do I have a car? What kind of car do I have?" (and memorizing the answers). By Oregon law, the doctors have to send documents to the DMV to inform them whenever a person suffers a loss of consciousness. The person's license is automatically suspended. So Brian's license is temporarily suspended, until such time as he passes a battery of tests with Dr. Villanueva (neuropsychologist), is okayed by the therapists in Outpatient Therapy, and probably passes written and road driving tests. Brian does not seem distressed by not being able to drive for a while - he just seems to want to be sure he has a license and a car. he doesn't remember getting his license, and thinks he still owns his old Toyota Corolla wagon, so we are working on remembering his new car.
(Brian never did regain his license. Although he drove a little up in the mountains on back roads, he was not able to regain any skill that would allow him to drive or regain his license. We had his little Nissan wagon while he lived with us in Ashland, with its great stereo, and it took us on trips around the state. Brian always got to pick the music. The car was called "The Boognish", after Ween, his favorite band)
One of Brian's "themes" is that he feels "sleazy" or "scummy" for going out with a girl who is so much younger than he. "Do you think I'm sleazy?" he will ask. He fear people will think he is taking advantage of Alana. He knows she is "more mature" than other girls her age, but he is still concerned.
Dr. Fennel came in to visit Brian around 4:45. Brian was pleased to see him, and tried to remember his name. First he guessed "Foster", then tried "Fe...", then reached out his hand and burst out with, "Dr. Fudgesicle!" Fennel laughed and told Brian he could call him "Dr. Dan". "Dr. Dan Fennel", Brian repeated. Fennel is very pleased at how well Brian is doing. 
Brian and Nurse Bryan (3 - 11 shift) have a great bantering relationship, teasing about names.
In the evening Brian was very lively. We walked and rolled around the Unit, and sat in his room, discussing nice vs mean people, his desires to be a teacher, Alana and beauty. He said,"Nice is NOT a compliment. It just IS," and that "Mean people can't help being mean. They were raised that way." He wants to "raise kids", as a parent AND a teacher. He knows he is nice, but "I can't help it - the people who raised me were all nice", including teachers. He said, "Alana is 'BEAUTIFUL'  (with fingers raised as quote marks) on the outside, but she's beautiful inside, too." He again expressed concerns over being "sleazy" and told me he was attracted to her physically when they met. It was fun just talking with him about what is important to him. 
I read to him as usual, and he fell asleep by 9:30.

We All Get A's

Wednesday 28 November 2001
FROM MY NOTES:
I was awakened by a 4:30 am phone call from the Unit: Brian was awake and asking for "someone he loved" to come see him. So I got up, dressed, and got there by 5:30. He was in bed, peacefully looking at his notebook calendar. This was a good thing, and I didn't really want to interrupt. But I sat with him and we talked. He immediately wanted to see Alana and walk, neither of which he could do at that moment.
The themes/questions/statements of the morning and later:
"What is reality? You're born, you walk, you die."
"When I was in a coma, I thought I was dead."
"I know more about dying than you do." (singing)
"I feel like I know what it's like to be dead."
"I want to see my girlfriend!" (he didn't remember seeing Alana the evening before)
One thing I did to try to distract him was to give him a pad and a colored pen to write "I can walk" several times. As he lost focus, the writing and spelling disintegrated. But his writing is larger, and he writes his small 'a' in the familiar manner: a. I also walked around the Unit with him - he was in the wheelchair - when it was late enough that we wouldn't disturb people. And I helped him stand to pee!
Dave came during breakfast. I left to go ready myself for working at Lincoln School in the afternoon. I didn't return until 7 pm, for the evening shift. Dave reported the day's activities verbally and in notes. Dave stood Brian up while Brian dressed himself. later on, Brian had a shower.
A quote Dave noted: " When I was in a coma I realized how pointless life was. (a silly look at shocked Dave) Just kidding. I'm so glad (to be alive)!"
With Marcy, Brian sorted puzzle pieces, pee'd standing, and started his laundry (which he and I put away in the evening).
Later on, Brian worked with Marcy and Amy together. He walked to the gym, stood to work on puzzle and card sorting, and they noted he is "Doing great!"
Brian and Dave had lunch together. During Brian's afternoon session with Julie, he practiced writing words in phrases, and checking his work. He worked more on this later on. Dave also had him copying sentences, such as, "Dave makes me work too hard." Brian apparently got a big kick out of that one. 
Dave also took Brian around to visit with June, and they shared artwork. June Smith is an Ashland resident and Peace House figure, who had a stroke right after Brian's heart attack. She is also an artist. 
In Brian's final PT session of the day, he worked with Sharla. She had him walking, working on math skills, sorting cards and balancing on his knees.
Wednesday afternoon from 2 to 3 is Show and Tell time for everyone. Dr. Solomon, Janet Murphy, therapists and family are a part of it. Brian wowed everyone, put together the puzzle faster than he ever has, and told Jeff Solomon he is "an awesome doctor!" (which he is).
Dave, Brian and I all got straight As; the therapists are pleased to have Dave and I on the team, Joyce wants to hire us, and Julie is amazed at how we are a step ahead of her. They all stressed that our work with Brian is helping him progress as quickly as he has. YAY Brian!!
Brian was obviously tired when all this was over, and Dave insisted he get in bed. Brian protested; Dave left for ten minutes and Brian fell asleep. He was allowed to sleep through a 4 pm therapy slot with Amy, and through his regular dinner time at 5 pm; Nurse John held Brian's dinner till 6 pm. Apparently Marshall got stuck on the mountain and couldn't make it to dinner with Brian. (Marshall was managing the restaurant at Mt. Ashland) Marshall called, spoke to a nurse, spoke to Brian, but didn't make certain that the message got to Dave (who had to ask the nurse). Brian did not remember that it was Marshall he had just talked to, so he was unable to relay any message. Kellie also did not show up.
Dave left Brian asleep. I returned at 7 pm and Brian was wide awake and talking. Apparently Sarah Golden had tried to visit, but Brian was asleep. She left a note. Brian was a bit distractable, fixating on the usual themes. Alana did not visit, nor did anyone else. Brian told me he had had a dream during the coma in which he had walked on the moon and his helmet broke and he died from lack of oxygen. He had asked me earlier if anyone had walked on the moon yet. Brian also told me he had dreamed that Alana broke up with him, and he cried about it this morning. 
Brian is noticing how thin he is.
I read in Looking Glass and Brian fell asleep by 9:30 pm.