Thursday, July 31

My warpath mentality by the time I left the skf on Tuesday evening seems to have hit home. I am happy to report that there was a definite improvement at the skf yesterday. It helped that before returning, I talked on the phone with my wonderful friend, Gaie, who is a nursing professor and has worked at rehab centers in Michigan. She filled me in on the realities of the skfs, including the fact that almost all of them are understaffed and the staff who are there are underpaid. That softened my pique. She has also given me a lot of good tricks of the caregiver trade, including how to win friends and influence therapists at the skf. Yesterday I noticed some improvements. There were two particularly good nurses on duty (Rule #1 from Gaie--figure out who the best nurses are and get to know them, maybe even send them flowers), and they were emphatic about checking on things for me.
For example, Tommy was supposed to have a weighted knife and fork, and also a plate barrier (so that he can push his food against it)--if he has these tools, he can feed himself. But when I got there, an aide was feeding him and the utensils weren't there yet. I told the nurse that he can feed himself if he has his proper utensils and asked where they were. She got on the horn, tracked them down, and had someone hand-deliver them right on the spot--scoring her one point with the Connie bitch.
Then I asked her about why straws were in Tommy's drinks when the OT guy had told me during his assessment in the morning that if the speech therapist at Milford hadn't allowed Tommy to use straws, they wouldn't allow them here either, until they'd had a chance to fully assess his ability to use them. So, I asked the nurse--oh, have they assessed the straws already? She said she hadn't known anything about straws, but she immediately removed them from Tommy's drinks and then, five minutes later, she said, "I've gone right to the top with this question, because it's important...I called the Director of Nursing and she's going to take care of it." Well.
Now I was really on a roll, so I mentioned that even though the dietary guy had gone over Tommy's drink preferences with me in person the previous afternoon, at which time I had said--and he had written down--that the only drinks Tommy likes are apple juice and iced tea, and that he won't drink anything else, and dietary guy had assured me that Tommy would get only those drinks, nonetheless Tommy's breakfast tray had had orange juice and coffee and his dinner tray now had cola and nothing else. The nurse immediately filled out a very official "dietary change order" and wrote down what I told her and said, "You be sure to let the nurse know if you get any more strange drinks."
So I do think that there's hope.

Wednesday, July 30

There are going to be frustrating days, and yesterday was one of them. On Tommy's arrival at the Renaissance skf, there was no wheelchair ready for him, so he spent most of the afternoon lying in bed. When they did find a wheelchair, they couldn't find its leg attachment, making it impossible to wheel him since he is unable to hold his right leg up by himself. This was very frustrating. Also, on Tommy's arrival, the nurse said to leave all of Tommy's clothes at the front desk to be "labeled." So I did. But, at the end of the day, as I was preparing to leave, the evening-shift nurse asked me, "What is Mr. Long going to wear tomorrow?" I said, "His clothes are here--I was told to leave them at the front desk this morning." She answered that I should have held back a set of clothes for him, adding that "Tonya" should have told me that when she went through the admission papers with me. Tonya? You get the drift. Since the labeled clothes won't be back in time, I am rushing through this note so I can take a set of clean clothes for Tommy before he gets up. This skf was recommended to us because of the high quality of the physical-therapy staff, so I am definitely hoping that will be the case. In the meantime--well, it was a tough move.

Monday, July 28

This is Tommy's last day at the Milford Rehab Center--tomorrow morning, at 10 AM, he will be moved to Renaissance Rehab, which is about a half-hour from the house (it's east of Millsboro--between Millsboro and Rehoboth Beach--on Rt. 24). So today, between Tommy's last therapy sessions, I'll be busy packing Tommy's many cards, his photo album, Lincoln Logs, plants, clothing and other possessions. Tommy and I have both been very comfortable in the hospital's rehab unit and I am sure Tommy will get plenty of hugs throughout the day.

Sunday, July 27

Yesterday afternoon Tommy's daughter Karen and granddaughter Kelly visited Tommy; and, says Kelly, we had a very good time. The highlight was when Kelly rebuilt the Lincoln Log watchtower. Kelly also worked the giraffe puzzle, with a little help from Karen and me, after which we all went down the hall to the aquarium, where Tommy pointed out his favorite pair of fish to us (very colorful specimens, with neon blue stripes on their backs). And, yes, he gave Karen a big smile.

Saturday, July 26

This week Tommy has "walked the bars" a dozen times--three times during each physical-therapy session with Catherine. Although Tommy still requires two people to help, including Catherine advancing his right leg with each step and me advancing his right hand, his ability to shift his balance continues to improve.
It took Tommy a month from the time of his stroke, but yesterday he finally smiled for two of his favorite caregivers, Dee and Qwanteisha, to their delight. This weekend, Tommy's daughter Karen is here, along with his son-in-law Paul and youngest granddaughter Kelly. Karen and I will head up to Milford in a while to see him, and I have no doubt that he will greet her with a big smile.
I will try to upload some photographs of yesterday's session, but for some reason my Mac doesn't cooperate with photo uploads, so I am forced to e-mail the photos to my sister Trudy, who then loads them onto the site for me--thanks, Trudy!

Thursday, July 24

This afternoon the social worker at the Milford rehab center, Paige, told me that the admission process for Tommy to the short-term rehab wing at the Renaissance center in nearby Millsboro has been completed. We are pleased because this skilled nursing facility (skf) was our first choice for Tommy's continuing care. Next Tuesday (July 29), at 10 A.M., Tommy will leave Milford by ambulance and be taken to the Millsboro center, and I will follow in the car. Meanwhile, at home, work continues on the ramp and the bathroom renovation to prepare for Tommy's eventual return.

Wednesday, July 23

The message that I'm getting from the therapists--who are, on the whole, really good--is that Tommy makes a little bit of progress every day and that it's obvious he's also increasing in his effort and in his ability to concentrate on the task at hand (this latter has been a big problem--his eyes used to wander around the room all the time and he would "zone out"). His eyes even look more connected. And, also in line with this, I am finding just since the weekend that Tommy is asking me questions! As I was getting ready to leave last night, for example, I told him that I would get there later today because I was going to do my volunteer gig at the thrift shop from 12 to 3, my usual stint. And he asked, "What time will you get here?" His brain is actually plugging in to what he's hearing and doing something more with that information than saying the automatic "Mm-hm". I am now explaining things to him in more detail. For example, yesterday I said, "Tommy, you're only going to be with these people another week before you go to Millsboro, and I know you really like some of them and you're going to miss them, so think about that...you might want to let them know somehow that you appreciate all the help they've given you...right?" "That's for sure," he said haltingly. It's interesting that he's carrying on longer phone conversations, too--yesterday when Janis called and I gave him the phone, he said, "It sounds like my good friend, Janis." He held the phone himself and answered her for a couple of minutes with phrases that, she told me later, were all responsive to what she'd been saying to him.

And, yesterday afternoon, Tommy actually walked for the first time. His inability to control his "grasping" right hand and largely unresponsive right leg are, of course, huge limitations. Catherine, the therapist, was in front of him on a rolling stool (which all the therapists zip around on--it's funny to watch); and Catherine had both her hands against him and used both her feet to push herself back and then to cup Tommy's right foot and move it forward--quite an impressive bit of gymnastics on her part. Another therapist was outside the right-hand rail, walking alongside and moving his right hand along with each step. I was in back of him, moving the wheelchair close behind him and holding the back of his pants, so that in case he started to fall he'd go backward into his wheelchair rather than forward over Catherine. So, he wasn't really able to "use" his right side, except, as Catherine emphasized, he was shifting his weight to the right and left with each step--that is what the exercise was all about--and she said he did very well on that score. Three times during the half-hour session he walked the full length of the bars, earning him the congratulations of all the therapists in the gym.

Tuesday, July 22

Yesterday was a busy therapy day for Tommy. In OT, Robin had him removing large clothespins from a line and dropping them into a trough below; he did fine with his left hand, but his right hand was unable to let go of the pins to let them drop. Brie, the speech therapist, had lunch with him as a way to address the "big bites" problem, and she had him using his more controllable left hand to hold the fork. She explained to him that, until he gets the bite-portion problem under control, he can't move up from pureed to soft food, because even though his swallowing has improved the huge bites of hard food could cause him to choke. Hoping for progress on that front. His last therapy of the day was physical therapy, and here he showed significant improvement when a young fellow named Shannon worked with him for the first time. During the session, Tommy did 20 leg lifts--modest but consistent--with his left leg, with a weight attached to his ankle. And, at the end of the session, Shannon got Tommy to propel his own wheelchair to the gym door, using only his left arm and left leg. This was a definite first.
Before leaving, I asked Tommy the name of the horse (see previous post), and without a pause, he said, "Trigger." He'd obviously been thinking about it.

Monday, July 21

Yesterday evening after dinner--with Tommy holding the diagrammed directions and saying "Mm-hm" when I placed the pieces correctly--I finished putting together the Lincoln Logs "frontier watchtower," a log kit with a tall tower that includes a burly plastic sheriff holding a lasso in one hand, and the sheriff's gray horse. After an entire day of no talking other than "Mm-hm" and "Mm-uh," Tommy said quite unexpectedly, "Put the man in the tower." I did, and then, after several minutes of staring at our creation, he said (and I quote), "I would like to jump up on that table." I asked, "What do you think the sheriff would do?" He said, "Jump down and beat the band." I asked him, "Do you see yourself as the sheriff?" and he said, "Yes." Today I'll have to ask him what the horse's name is.

Sunday, July 20

Ahhh, a breather...for Tommy and me, both. Tommy is taking a much-deserved nap as I write this at the rehab center's computer. He was up all morning, and ate breakfast and lunch heartily. I missed those meals, as I spent the morning cleaning the house.
When I arrived home last night, I had a fresh lime and seltzer on the back deck as our wonderful friend, Irv, threw balls in the backyard for Penny and Sandy (Irv has been taking out and feeding the dogs every single day since Tommy's stroke, allowing me to spend time with Tommy). We watched with amazement as a huge full moon appeared over the treeline across the creek--it was eerily beautiful, a deep yellow-orange. A steady breeze brushed the surface of the creek, and as the moon rose, its light illuminated the creek's entire riffled surface--an intense steel blue against the dark fringe of trees beyond. This is what Tommy will eventually return home to, and we are so lucky for that!
When I arrived here at the rehab center in the early afternoon, Katrina--Tommy's nurse for the 7-to-3 shift--told me with a big smile that Tommy had taken "small bites" at breakfast. This was very good news, indeed, because for the last few days he'd been loading his spoon with way too much food and then balking at anyone who told him he needed to take smaller bites in order to avoid "aspiration" (that's when food goes down the wrong tube into his lungs, which can lead to pneumonia). I'd been getting tired of hearing myself say, "Smaller bites!" and spoon-wrestling with him at every meal. The other good news is that Tommy is improving, slowly but surely, in taking on his own weight during the transfers, which still require two staff members to accomplish.

Saturday, July 19

On Monday morning, I need to give the center's social worker a list of three skilled-nursing facilities (AKA "skf", pronounced skiff)--Tommy's and my preferences, so that she can begin making the transfer arrangements for July 29 (you don't always get your first choice, since the facility must have a bed available on the date in question). Patti's son, Daryl, recommended Renaissance, which is a new facility on Rt. 24, between Millsboro and Rehoboth Beach (about a half-hour drive from the house). So, on Friday, I visited Renaissance and two other facilities. At Renaissance, the social worker gave me a tour; its therapy program is more robust than many skilled-nursing facilities, and I met a strapping young therapist named Tim who looked just right for helping Tommy learn how to stand and help the caregiver pivot him during transfers--one of the most important skills he needs to master. So Renaissance is at the top of the list, and let's cross our fingers that they "have a bed" on the 29th.
It's another slow weekend at the rehab center, so yesterday, after visiting the skf's, I picked up some fun stuff for Tommy and me to play with--a 100-piece puzzle of a mama giraffe and her baby; a large set of Lincoln Logs, with which we began to build the "frontier watchtower" after dinner last night (Brie, the speech therapist, suggested the logs, and what a good idea that was); and a wooden model of a tugboat, which we'll put together Sunday. It's surprising how many steps there are in each of these seemingly simple pastimes. For example, as we worked the puzzle yesterday afternoon, it was Tommy's job to pick out the pieces that had a straight side, and it took long minutes as he fingered and studied each one. We'll get it put together before the weekend is over. Ditto for the frontier watchtower and the tugboat. Then, on Monday morning, his busy week will once again crank up.

Friday, July 18

The good news is that yesterday, at the staff meeting, Tommy's treatment team at the acute rehab center decided to keep him there until the 29th, which means he will receive another week and a half of intense therapies, all of which are helping him. However, the not so good news is that the team made this decision despite the consensus that Tommy has been very slow to improve in the functional areas that are so crucial if he wants to return home; these include the ability to stand during transfers, to move his right leg (which, of course, will be necessary before walking is even a possibility), and to become continent. The decision to keep him for more treatment was based on Tommy's obvious cognitive improvement--the hope is that, during the remainder of his stay, this improvement will translate into improved functional abilities. The social worker has asked me to give her, by Monday, a short list of my choices of skilled nursing facilities in the area, so that she can arrange for Tommy's transfer to one of them on the 29th. A skilled nursing facility doesn't offer as much therapy as an acute rehab center, but until he's able to help with transfers and is continent, it will be a safe place for him. The center's therapists have been showing me how I can help Tommy with various exercises while he's in the "skf", but the biggest hurdle remains Tommy's ability to bear his own weight--something only he can do!

Wednesday, July 16

There's progress and then there's what Medicare recognizes as progress, which is also known as "functional progress". Tommy is definitely making progress--it's evident every day. Example: He surprised a nurse's aide yesterday when he read her name on her name tag. "Stephanie," he said to her, as she helped prepare him for bed. "Did you read that off my name tag?" she asked him incredulously. He nodded. He's been reading the signatures of his friends when we go through the cards he's received, too. But the functional progress is coming more slowly--for example, his right leg still isn't kicking in, which means he is a long way from standing or walking. And, he still hasn't demonstrated to the speech therapist that he can speak more than the most rudimentary of words. It's frustrating to me, because at times he comes out with entire sentences that make perfect sense and that use the same vocabulary he's always had. It's hard to tell whether his long silences when he says only "Mm-hum" and "Mm-uh" are because he has genuine lapses in his ability to speak, or because he's rebelling against constantly being told to speak, or a combination of both (I suspect it's the latter). One area of definite functional progress is eating--he now eats with a fork, from start of the meal to finish, and holds his cup to drink. It's clear to those of us who are close to Tommy that inside that noggin it's the same old Tommy Long, and that's the most important thing, and very gratifying.

Monday, July 14

Tommy had a somewhat slow start to the new week of therapy--not surprising after two days of no therapy. However, he is now able to help enough with his transfers (i.e., to hold some of his own weight) that the Foley lift is no longer necessary--depending on the strength of the staffer(s), he can now be moved from bed to wheelchair and vice versa by one or two people.
On the home front, I met this morning with the man who is going to replace the ancient Jacuzzi tub in the bathroom with a Tommy-friendly shower; and Irv has been measuring for the ramp he is going to build at the front door. Onward.

Sunday, July 13

On Thursday evening, Tommy's sister and brother-in-law, Elaine and Alan, visited, and Elaine had a great impromptu "physical-therapy session" with Tommy using his pair of red hand-exercise balls. She got him to actually put a ball in the palm of her hand and let go of it with his right hand, something that none of the therapists had been able to get him to do (Tommy has a problem "letting go" with his right hand; usually, once he grasps something, he holds it so tightly that it's difficult to pry his fingers off of it). Alan and I were cheering Tommy--and Elaine! There was also a very funny moment when Elaine was trying to get Tommy to talk more. She took the balls in her hands, crossed her arms in front of her chest, and said, "Okay, Tommy, where are the balls now?" After asking him two or three times, he finally said, "They're under your boobies." That's Tommy.
Weekends are slow at the center, as there are no therapy sessions, so Tommy and I just hang out together. Each evening after dinner, I read him another chapter of My Demon Motorboat (Tommy's favorite book from childhood), which is a very funny book and which weaves in all kinds of information about how to run--and how not to run--a motorboat. There's no subject that Tommy finds more interesting, so he listens intently.
SPECIAL NOTE: Every day, Tommy and I go through the cards that you folks have sent (when Tommy receives cards now, he is able to open them by himself, which takes a long time but which he obviously relishes); and then I add the new photos that have arrived with the notes to the photo album that Janis sent, and we go through that, talking about everybody in the photos. So keep those cards and pictures coming---Tommy Long, P.O. Box 1427, Ocean View, DE 19970.

Saturday, July 12

On Thursday afternoon, the social worker, Paige, reported to me the results of the first staff assessment meeting. I had expected a positive report (i.e., "It's obvious to all staff that Mr. Long is making good progress--he is talking more, he's more awake during the day, he's making an effort in physical therapy--very good progress after having spent the first week after the stroke on his back barely able to move"). She did say that, but alas, she said more than that. This was the first time anyone had talked with me in terms of actually assigning a score to the various improvements that all agree Tommy has been making. She explained that there is a four-stage scoring system, which ranges from "dependent" (100-percent dependence on care) to "maximum-assist" (75 percent dependence) to "moderate-assist" (50 percent) to "minimum-assist (25 percent)." There are specific "functional" abilities that he must show progress in during each week; i.e., he must move from "dep" to "max-assist" in a significant number of these functions. These include the ability to sit upright at the side of the bed; the ability to "help" during "transfers" (a transfer is any move of the patient from one spot to another, such as, for example, from wheelchair to bed, where he needs to use his arms to help lift his body up from the wheelchair and he also must assume some of his own weight while the caregiver(s) pivot him onto the bed); and the abilities to respond consistently by talking or other means, to feed himself, and to take care of his own bathroom needs.
The problem is that, although Tommy showed great improvement during the previous week, he showed functional improvement only in the category of "ability to feed himself" (where he moved from "dep" to "max-assist"). In all other functions, he remained "dependent." If he can show significant functional progress by next Thursday (i.e., so that in several abilities he moves from "dep" to "max-assist"), the staff will then determine the "goals" for Tommy's therapy (although scheduled to be done at this meeting, it was postponed due to the fact that, so far, they hadn't seen enough functional progress to actually determine his goals); and they will allow him to stay in the program, at least until the following Thursday. (Medicare will cover his rehab at the center until July 29, but only if he shows "progress"; their coverage stops in its tracks if it's simply a "maintenance" situation.) If he doesn't improve significantly, the rehab center will initiate the move to a skilled nursing facility ("SNF") where, with Medicare support, Tommy can gather his strength, after which he could return to the program. I have learned that SNFs offer about half as much physical therapy, and this wouldn't be the end of the world, but I talked with Tommy on Thursday evening and we definitely want him to stay where he is. He has momentum, it's a good program, we want to keep it going.
On Friday, he worked very hard in his various therapy sessions, which I attended with him after staying overnight with him, sleeping in the chair-bed. In the morning, the speech therapist, Brie, said that their session was by far the best they have had. At all meals, he fed himself, and with increasing skill. In physical therapy, he operated a table-top set of "bike pedals" using his arms for a good ten minutes, which was really great for his arm strength; and he actually stood (assisted) at the parallel walking bars for several minutes. All day long, his transfers were accomplished not with the Hoyer lift, but rather by two staff members, who said that he was beginning to help with standing up and taking on some of his own weight. If Tommy can continue these functional improvements, he'll be in good shape to stay. He really wants to get better and come home, and he understands what he must do. So everybody keep your fingers crossed.
SPECIAL NOTE: I have learned that you have to ask, ask, ask, and keep asking until you get a satisfactory answer. In my meeting with the social worker, she initially gave me a very broad-brushed report. I was so surprised by what she was saying that I pulled out a notebook and began taking notes, and eventually, after a half-hour of increasingly specific questions, I finally was getting the overall picture of how it works. After she laid out the grading system to me, I said, "So there's actually a score card?" and she answered yes. "May I have a copy?" Again, yes. Well, duh.

Thursday, July 10

It's "steady as she goes" with Tommy. Yesterday at dinner (after two previous meals of taking the spoon but finding he was unable to maneuver it adequately), Tommy again reached for the spoon--with his right hand, no less (very significant, as it was the right side of his body that was set back by the stroke). This time, Tommy fed himself the entire meal; with his elbow on the wheelchair armrest, he was able to pivot his upper arm back and forth from plate to mouth, requiring a huge and sustained effort. After the meal, as the dozen or so patients and their family members left the dining room, many stopped to congratulate Tommy on his accomplishment and, although he hasn't smiled yet, he did nod and say "Uh-huh" to each of them. Meantime, Tommy's left arm is functioning well; Catherine reports that, with his left hand, he turns the pages of the small photo album of boatyard staff, customers and friends that Janis recently sent.
This morning Karen and her clan will visit Tommy before heading back to southern Virginia later in the day. Also this morning, the center's staff will meet to assess Tommy's progress and future treatment, so I am expecting to hear news of that meeting when I go up there this afternoon.

Wednesday, July 9

The flying nun lives--the one who swoops in and rescues you from Medicare hell--and in Millville, yesterday morning, she took the form of Jo at the trim little house on Rte. 26 with the State Farm agency sign out front. That is one of the great things about living in a small town; unlike DC, where, when you have an emergency, you can plan on spending hours getting it solved (three-fourths of which will be spent listening to elevator music while on "hold"), in Millville you make a call, and they say come right in, and you do, and someone whose name you already know sits down with you and says, "How can I help you?" In this case, I said to Jo, "Please spell out Tommy's Medicare and Medigap coverage for me, and think of it as 'Medicare for Dummies'" and she said, "You got it." Thank you, Jo!
In the afternoon, Tommy's daughter, Karen, arrived with her husband, Paul, and oldest daughter, Jenny, and we all headed up to Milford to see Tommy. When we arrived, he was in the gym, seated in his wheelchair next to a therapist, Catherine, who was helping him to write his name on a board with a big magic marker. She was guiding his right arm as he concentrated, and as his hand moved tentatively, mostly under her power, I could discern the characteristic choppy way he makes the two "m's" when he signs his name, which was gratifying to see. Also gratifying was the fact that, for the first time, he was awake and alert late in the afternoon. Karen--a chip off the old block--brought him a wooden model of a Bay boat, which he held in both hands for several long minutes, using his right hand to simply cradle it while, with his left, he gingerly touched its rich brown hull and topsides and all the little metal parts.
We had dinner with him in the cafeteria (pureed fish--yuk--which he rejected by simply not opening his mouth; but also vegetable soup, which he polished off, followed by chocolate pudding and sherbet, which he always loves); and after dinner, as we do every evening, we took a stroll down the hall to the aquarium, which is filled with a variety of colorful fish that are endless fun to watch. Returning from the aquarium, we passed his RN, Kristen, at the nurses' station (a lovely young woman, she often says to Tommy, "Mr. Long, I'm going to get a smile out of you before you leave here!"). As we rolled Tommy past, she called out, "Hi, Mr. Long!" And Tommy, after an afternoon and evening of saying nothing but "Mm-huh" and "Mm-uh", answered, loud and clear, "Hi, Sweetie."

Monday, July 7

Today, Tommy's doctor at the rehab center told me that on Thursday the treatment team (doctor, therapists, nursing staff, social worker) will meet to assess how Tommy has done so far, determine what goals are realistic for him, and then adjust his therapy plan accordingly. He also said that Tommy has a "long road" to recovery, but that although his progress is slow, it's steady.
Later, the social worker told me that because of all the "complicated Medicare criteria," Tommy's stay would probably be 28 days. She actually rolled her eyes when she said the word "criteria", not an encouraging moment. She has all of his insurance information (he has a medigap policy with State Farm in addition to Medicare), but I don't want to assume that the medigap policy wouldn't help him to stay longer. So, when I got home, I studied Tommy's medigap policy to see if it might add possible days to his stay at this center, and the language was such gobbledygook I couldn't figure it out. Example: it talked about paying partially for stays at things like a "hospital" or a "skilled nursing facility" but then when I flipped to its "definitions" page, it defined skilled nursing facility as, and I quote, "Skilled Nursing Facility means a facility defined as such in the Medicare program." Oh boy. This stuff is going to tax my brain. I am going over to the State Farm office this morning to pick their brains about what kind of coverage, if any, this policy offers for an acute rehab center--i.e., does it fall under the SNF definition?--and about what else it covers. Isn't there a great big flying nun out there who swoops in and says, "Don't worry, I'm the health-services interpreter who will explain this trick language to you"?

Sunday, July 6

Penny visited Tommy this morning and it wasn't only Tommy who was delighted--the staff and patients also got a kick out of having a big black gentle dog on the floor. Penny was on her best behavior; it was her first time in an elevator, but she rose to the occasion; and, of course, it helped that her beloved "Uncle Irv" was at the reins.

Saturday, July 5

Yesterday was a relaxed, slowed-down day on the center's holiday schedule. All of the therapists and patients met for the morning in the gym. With their wheelchairs in a large circle, the patients were led in very simple exercises such as lifting first one leg, then the other, ten times. Tommy is still not able to keep up, but each day his brain is plugging in a little more.
One of Tommy's favorite therapists is Brie, the speech therapist, and she is beginning to glimpse his unusual personality. On Wednesday she sat with Tommy and another patient, Berniece, to practice talking with them. "Berniece," she said; "Can you say Eeeee...?" Berniece said, haltingly, "Eeeee." Then she turned to Tom--"Tom, can you say Eeeee...?" No response for a minute and he finally said, slowly, "Eeeeeeease into it." She looked at me with a look of "Huh?" and I just shook my head and smiled. (I was telling Steve about this yesterday, when we had lunch with Tommy, and he said it runs in the family--his daughter LeeAnn, Tommy's granddaughter, has the same offbeat mind.) Back to Brie, though--so she moved on to Ooooo, and when she asked, "Tom, can you say Ooooo...?" there was another long pause, and Tommy finally said, "...shit." This time Brie's jaw dropped.
Last night, after an afternoon of watching the Jaws marathon on tv with Tommy, Steve headed back to Millville to take Jill and the kids to Bethany Beach for the fireworks; but if they got the same huge storm in Bethany Beach that we got up here in Milford, then they--like us--were treated to fireworks of a different order. It was a great display, lasting two hours, with lots of lightning and thunder, which Tommy and I both enjoyed. Later, when one of the nurses noticed me scrunched into the "car bed" alongside Tommy's bed, she told me I hadn't opened it all the way--the high back cushion actually comes down flat when you keep pulling from the bottom, adding a good two feet to its length and making it more like the backseat of a Cadillac than that of a VW--a vast improvement.
I asked Tommy this morning if he feels comfortable here and if he thinks that the people here are helping him. He said yes. Yay.

Friday, July 4

Tommy's son Steve is here for the weekend, so he and Irv are taking care of the dogs at home, allowing me to stay overnight in the room with Tommy. I slept on a "pull-out chair" that reminded me of those times in my teenage years when, for one reason or another of poor planning, I ended up sleeping in the backseat of a car. Kind of scrunched, but definitely better than dozing in a chair. Today Tommy has a cut-back schedule of his various therapies (physical, occupational and speech)--three hours in a group session in the mornings, in the large gadget-filled gym, so that the staff can get home to enjoy the holiday. Ditto for the weekend--a scaled-back schedule--which will give Tommy a chance to rest up after a rigorous three days of rehab work. Up until yesterday he was so groggy, even in his wheelchair, that he couldn't accomplish much in the rehab sessions. But yesterday was better, especially in the afternoon, when he perked up.
Since Tommy arrived here, all of his "transfers" (i.e., moving him from bed to wheelchair or vice versa) have been accomplished using a Hoyer lift; this wheeled contraption resembles a large white metal stork that hoists a hammock-hugged Tommy upward and over in its long beak. It takes two staff members to operate it, and is a demanding task; frankly, it constantly amazes me how much unremitting work the nurses do here all day (and night) long, as at Beebe Hospital. All the staff at both places are very good. Yesterday afternoon, in the gym, when Robin, one of the physical therapists, was having trouble getting Tommy to respond to her, she called over to the little windowed office, "I need Wendy." Out came a large, strong woman who joined Robin and proceeded to tickle, prod, cajole and otherwise force Tommy to react--if only to try to elbow her away with his good arm! Wendy is clearly the heavy hitter of the PT department. By the end of the session, Robin and Wendy had succeeded in getting Tommy from the chair onto a large bedlike platform, using only their own selves, a big accomplishment--and eventually they had him sitting up at the edge of that platform using his own back muscles--a huge accomplishment for all three of them.
Steve arrived later in the afternoon and accompanied Tommy to the dining room (where his diet is still "puree" and hand-fed), while I took a walk down the homey main street of Milton and located a little coffee shop with big stuffed chairs, always a good destination. Steve will visit again this afternoon.
I wish you all a happy Fourth of July and thank you again for the many expressions of support--don't forget to send some photos to put in the album we are putting together for Tommy to leaf through.

Wednesday evening, July 2

Today Tommy started out groggy, but he improved a little bit as the day went on. After days of sleeping a lot and being fed in bed, it was a huge change for him to be awakened at 7, dressed, and taken to the dining room in a wheelchair for breakfast--a meal that he's never even eaten as long as I've known him. He had several therapy sessions, which he found difficult; but after a long nap before dinner, he was more alert than he'd been all day. After dinner I read him about 20 pages from My Demon Motor Boat and he listened intently the entire time. I asked him if he remembered reading the story when he was a boy, and he said yes. In the story, the name of the boat is "Imp" and, several times, he said, sort of to himself, "Imp...Imp... Imp" as though he was recalling the boat's name from distant memory.
Before leaving, I told him, Tommy, when you were at the boatyard, you got up every morning at 7, and you went up to the yard at 8 on the dot, and you worked nonstop until 8 at night. It was your job. Now this is your job--to get up at 7, and work on getting your legs to work again. If you do this, everything else will follow. I wasn't sure that he'd heard me, but then he said, very faintly, "That's the name of the game." It was the only sentence he spoke all day but it spoke volumes.

Wednesday, July 2

Yesterday afternoon Tommy was transferred from Beebe Hospital to the Bayhealth acute rehab center, which is a second-floor wing of the Milford Memorial Hospital, in the town of Milford. (It's about 15 miles north of Georgetown, De., straight up Rt. 113.) Tommy has a private room with a very pretty view to the west of trees and sky. He is still very tired, although his right arm is beginning to kick in--he now scratches his head or rests his arm on the bed's rail, which is great to see. But none of the other limbs are moving on their own. He ate a pureed "dinner" of something green (peas?), something orange (they said it was salmon but I couldn't tell when I tasted it) and a chicken soup that he rejected by refusing to open his mouth after one spoonful. I tasted it and he was right. Also, chocolate pudding, which he can't get enough of, and iced tea, his favorite beverage. The schedule for today is up and dressed by 7, breakfast and all other meals in the dining room, and then various therapy sessions (physical, occupational and speech therapy) scattered throughout the day until about 4:00. In between therapy sessions, he'll be able to nap. Dinner at 6, and after dinner is when they give baths to the patients. The first three or four days are crucial--the staff members will judge whether they they think he is ready for acute rehab or should, instead, go to a sub-acute center for a while to gather his strength.
Even through his exhaustion, Tommy comes through in wonderful moments. Just before dinner (which they allowed him to have in his bed last night), his son Steve called, and when I put the phone to Tommy's ear, he said, "Hi, Buddy." Steve and I were both tickled by that. His daughter, Karen, talked with him too; with both of his kids, he listens with intensity. Later, before I left for the day, I gave Tommy a pep talk, reminding him that he was the guy who waterskied on one ski from DC down to Colonial Beach--a feat that, as far as anyone knows, nobody has ever duplicated--and that whenever he gets discouraged he should remember that he's that same guy. He said, "On one ski. That's me."

Tuesday, July 1

Last week, on Monday evening, June 23, Tommy had a stroke and was taken to Beebe Hospital in Lewes in an ambulance. He is still there now, resting somewhat comfortably. For several days it appeared that he may have lost his ability to speak, but little by little it's coming back. First he said "uh-huh", then "yeah" and, when his son Steve was here this weekend, he said a sentence for the first time: "I've got to wake up." Steve and I jumped for joy at hearing that. Tommy's sister Elaine and her husband Alan, and his good friends from here in Millville, Irv and Brenda, and Patti, have also visited, which has given him a huge lift.

The stroke was moderate, hitting the front left-hand side of his brain, but because he had several mini-strokes in earlier years, the doctors say it is a complicated situation. He is able to move his left arm and to a lesser extent his left leg, but not his right arm and leg. So, he will need acute rehabilitation at the rehab center in Milford (about a fifteen minute drive north of Georgetown, De.) Patti's son, Daryl, has a sports-physical-therapy practice in the area, and he was a great source of advice regarding which facility would be best for Tommy. Sometime later this week, the doctor will transfer Tommy to that center.

Tommy's doctor, Dr. Raj (short for Rajshekar Narasimaiah, with whom Tommy has a very good relationship) says that it is impossible to predict how much function Tommy will regain, but that he has several things working in his favor--his heart is strong, his other problems are under control (except for his hernia, but it doesn't look like it will hinder the rehab effort), and also the fact that Tommy stopped drinking beer four months ago. The rehab on average takes three or four weeks. It'll be a big challenge for Tommy, but he knows that the more work he does the better he'll get. If it's too demanding, they will send him, temporarily, to a sub-acute center in Lewes for a short while to build up his strength, and then back to Milford.

I am spending the days at the hospital with Tommy, and in my absence Irv is giving the dogs a good afternoon run and feeding them. Tommy loves to listen to the "sea songs" CD that Richard custom-made for us and which we have listened to in the car for several years while doing our errands. It opens with "Sea Cruise" and includes Tommy's favorite, Donovan singing "Henry Martin" (which Tommy calls the nya-nya song, a reference you will understand if you've heard it). I also am reading to Tommy from his favorite childhood book (which, I don't have to tell any of you, he SAVED)--My Demon Motor Boat by George Fitch.

Tommy wasn't allowed to eat for several days because his swallowing wasn't kicking in properly. Yesterday, when they bundled him into a big chair and took him down to the x-ray department so they could check his swallowing ability, the technician, a young guy named Ray, asked Tommy if he could smile and Tommy just looked back at him. So Ray said, "I'm sure the only thing that would make you smile would be a giant steak in front of you!" And Tommy smiled at that. It was a weak smile, but it was definitely a smile.

To all of you who have called and sent notes, thank you so much on Tommy's behalf. Keep it up! For those of you who have asked what you can do, right now the best thing is to help get word to everyone, so please help with that. Also, send him a card (address it to him at P.O. Box 1427, Ocean View, De. 19970). Janis and I were thinking that if you can enclose a photograph or two that would be great--anything that brings his friends and family front-and-center to him is what we're looking for. Once he's settled in the rehab center (where he will be given a combination of therapies--physical, occupational, speech--for a total of three hours a day), we'll know what the visiting schedule will be. Also, once he's there and we know his schedule, we can arrange a way so you can say hi to him on the phone. I will post all of that information on this blog as we go forward. If the blog hasn't answered your questions, or you just want to contact me, call me at the house (302-539-8079; let it ring about ten times, and I'll return your call asap) or e-mail me at constancebond@earthlink.net. lv to all, ~c.