Monday, December 29

This week is the official end of the Beebe home health people--Linda, the nurse, has been coming once a week to make sure Tommy is coming along okay; and Reva (sometimes, Gail) has been coming twice a week to give Tommy his showers. Now it's just Tommy and me for the showers; but I have learned a lot from watching Reva, an 18-year veteran, so I feel confident we'll do fine. We'll miss you, Reva!

December 24, Christmas eve

Oh boy. Sometimes you can tell that there's a problem but it takes a while to figure out what it is. That was the case beginning a week or so after Tommy's remaining lower teeth were pulled. It was supposed to take two weeks to heal, at which time Tommy would revisit his new dentist, Dr. James, to get molds made for his new plates. Not.
The problem was where the teeth had been removed, but it was unclear what it was. Tommy had no infection, no elevated temperature, no sign of any problem other than the fact that chewing was uncomfortable along the far right end of the lower gum. The visiting nurse, Linda, and I agreed that a puree diet was in order, and it did help. But, finally, the day before yesterday, we learned what the problem was--on awakening, Tommy showed me with the tip of his tongue a tooth fragment sticking up like a tiny iceberg. Until then, it had been covered by a thin layer of skin, so we hadn't see it hiding out under there. I touched it very lightly; it was very sharp, and Tommy said, "Ow!" In the afternoon, Linda confirmed that it was a piece of tooth or bone sticking up. I called the oral surgeon's office, and they fit him in the following afternoon. I was relieved that the surgeon was seeing him so quickly, but I was also filled with trepidation that the tooth was only the tip of an iceberg and the surgeon would have to open up Tommy's gums again. Thank goodness, it turned out to be only a fragment of tooth that somehow the surgeon had missed, and within ten minutes we were leaving the office (this time, without a stop at the front desk to pay).
We are now ready for a nice, relaxing Christmas. Tonight, Tommy will supervise Marsh and me as we put the ornaments on the tree (our family tradition is to decorate the tree on Christmas eve, although I jumped the gun with the lights a few weeks ago). If you are reading this blog, Tommy would love to hear your voice on the phone (me, too '-), so give a call at 302-539-8079. We will send out cards, but they will be late. For now, we're here quietly celebrating, with thanks in our hearts for all the wonderful things that family, friends and health-care folks have done for us this year.

Thursday, December 18

After days of gray skies, wind and rain, we again have bright sun this morning--yay. This means that, while Tommy is doing his cycling this morning, we will be able to sit in the sun and enjoy the scent of our Christmas tree and the many bright orange blooms of the hibiscus plants that my pals Susanna, Nancy and Laura brought me last spring. Tommy is temporarily between official treatment plans--after many visits during November and December by the Beebe home-health folks, all but two of them have "discharged" him (Linda and Reva, the nurse and bathing aide, will continue to come through December 30). Then, with the new year, I will sign Tommy up for his outpatient physical therapy. This means that, two or three times a week, we will ride over to the Beebe storefront rehab facility right here in Millville, next door to the Food Lion. There, Tommy will spend a couple of hours with a physical, occupational and speech therapist.
On Monday, we took a ride down to the Assawoman Wildlife Area south of town, our first purely fun "outing" since Tommy came home from Ren rehab, and the forests, marshes and boat landings were as lovely as ever. We both were thrilled to make that pilgrimage to one of our favorite places (Penny too, but we couldn't let her get out of the car because it's hunting season and visitors have to stay on the roads!).
Yesterday we had visits from Irv and Frank, and tomorrow Steve will arrive with our number two dog, Sandy. I am so grateful that Steve, Jill and the kids took care of Sandy while all those home-health people were coming and going, because Sandy is still rambunctious and it would have been chaotic to have her here for all that excitement. A huge thank-you, guys!

Wednesday, December 10

We're doing fine here; it's still a steep learning curve for me, but I'm getting the hang of it. Letting a natural routine emerge is the key, I think. That way, things get done naturally. Irv and I got the Christmas tree in from the deck last weekend (Tommy and I had a live tree with a root ball last Christmas, which we bought at the country store south of town, and which spent the better part of this year on the corner of the deck). I already have the lights on it, and Tommy and I enjoy it every evening twinkling out there on the porch. It will be the centerpiece on Christmas eve, when we will have a very casual open house, with the usual suspects coming by as well as a few new friends we've made this year at the thrift shop, library and Ren rehab. And, needless to say, if you are reading this blog, you are invited! Please let me know if you'll be in town and can come (Frank?).
Minor change of December plan: It turned out that, although Tommy's lower gumline healed well, the experience took several days of steam out of Tommy's system. He slept a lot and even now has more trouble than usual getting his right foot to pivot on command, which is a necessary skill during "transfers" from bed to wheelchair, etc. (One of the key problems Tommy has been working on since the stroke is getting commands from his brain to his right leg and arm.) In fact, the whole teeth-pulling project was like, well, pulling teeth. So, Tommy has decided that he wants to wait until after the holidays before doing anything about getting his new set of teeth. He says that he actually likes his ancient and worn upper plate and, not only that, he says that he actually likes using his lower gums to chew (as long as the food is softened, but by now I'm an old hand at that).

NOTE: The best time to call Tommy is now probably between 7 and 8 in the evening. Another good time is between 11 and noon. From around 3 to 5, Tommy usually takes a nap. Of course, any time you want to call, please do (302-539-8079), since you can always leave a message and we'll call back later. We're nearly always home but, if not, leave a message and we'll call back soon.

Thursday, December 4

Our Thanksgiving was wonderful--my sister, Trudy, was in charge of the turkey and stuffing (fabulous) and my brother, Marsh, provided back-up help. During the course of the holiday weekend, Tommy got to say hi to lots of family and friends, including both his sisters and both his kids. Over the past week, Tommy's home therapists have been discharging him from their care, with the recommendation that, after a week or two of rest, he continue therapy as an outpatient. Meanwhile, Tommy now has a daily exercise regimen--swallowing and tongue-strengthening exercises that were written down by the speech pathologist, arm and hand exercises written down by the occupational therapist, and five minutes each of pedal-exercising and walker practice. The last couple of days we've had fun with Tommy's old Erector set (his mom gave it to him for Christmas), which I dug out of the bedroom closet; right now, we're putting together the traveling jib crane (see photo).

Tuesday, November 25

What a crazy day yesterday, but everything came out fine. Everything, in this case, being Tommy's four remaining teeth, which were front and center in the bottom half. The day-long saga began at 8 in the morning, when we went to Dr. James, who is my dentist. Tommy hasn't had a dentist in living memory, so it was very fortunate that she would see him on such short notice. (There was an air of immediacy because one of the teeth was wiggling loose, and Dr. Raj was concerned that if it came out while he was lying down in bed, he could choke on it.) After a careful examination and an X ray, Dr. James concluded that Tommy needed to see an oral surgeon for the teeth-pulling, because there was a risk of greater than normal bleeding. While we were still in her office, she arranged for Tommy to see an oral surgeon in Lewes later in the day; so, at three o'clock, with me holding his hand to provide moral support (but not doing such a good job--I was trying not to pass out), Tommy sat in a small operating room where he endured numerous needle-stickings by the surgeon and, ten minutes later, the extraction of his four teeth with the use of a formidable pair of pliers. I was only able to watch at the very end, when the surgeon was sewing up the newly naked gums. Tommy has been eating soft foods while his mouth heals, which will take a couple of weeks. Then, he'll go back to Dr. James, who will make him a new set of choppers, top and bottom. He's pretty excited about it, because, in his words, "Then I can eat steak."

Sunday, November 23

All is going well. Tommy is getting more showers now than he ever did before his stroke. He loves his new pedal exerciser (officially called a "Restorator" by Sammons-Preston). Tomorrow morning he goes to the dentist, who will pull his two loose bottom teeth and then begin the process of making a new bottom plate for him. I'm sure he'll be happy when that's over. Me, too.

Wednesday, November 19

Following two weeks of ceaseless rain and wind, sunny fall weather has finally arrived. Tommy and I both enjoy sitting on the sun-bathed back porch in the morning and pitching the ball out into the run for Penny. Tommy also watches the occasional passing fishing boat heading out to the inlet, as well as the construction of the weirdly painted town houses that are going up across the creek (so far, we have pink, powder blue, purple and (for the creekside poolhouse) lime green. The builder seems to have a fixation on Key West.
Tommy continues to progress, although since yesterday he has been dealing with ye olde problem of constipation. He was uncomfortable yesterday, but this morning, with several doses of Milk of Magnesia under his belt, plus lots of prunes, broccoli and warm green tea, he's feeling better. Yesterday, when we realized there was a problem, I got good guidance by phone from a Beebe home health nurse; and today, Tommy's visiting nurse, Linda, is coming around 11, and she will guide me further on the best strategy. This afternoon, Stephanie (occupational therapy) will be here, and I will give Tommy a shower under her watchful eye. I am so glad I have the help of the Beebe home-health people, especially since the visit that Gaie scheduled in late September to help me when Tommy came home ended up happening early because his rehab stay was extended (nevertheless, Gaie gave me invaluable help when she was here, plus we had lots of good Scrabble games). My sister, Trudy, is due tomorrow (flying into Philly & driving down) for a couple of weeks' and my brother, Marshall, will join us for Thanksgiving. Tommy's sister and her husband are also coming to visit pretty soon. Tommy is still getting lots of calls and cards from family and friends, so he is getting a lot of warm attention (me, too '-). Irv is going on his annual hunting trip to West Virginia for a couple of weeks starting this weekend...I always like knowing he's in town, but he has promised to bring venison for us, as he does every year. He and I are going to make up a huge batch of venison stew and freeze a bunch of portions. With apologies to Rachael Ray, I can only say Yum-o.

Sunday, November 16

It's been two weeks and a day since Tommy came home and everything goes well. But it's been busy--there is always a long list of things to get done, and never enough time. It's been raining nearly nonstop since Tommy's return, but finally today we had ample sunshine and blue skies among the high winds and scudding clouds. Very relaxing. Tomorrow Tommy must buckle down for another week of various therapy sessions.

Wednesday, November 12

Everything is going along well. The Beebe home health folks are coming in various combinations each day; today Tommy worked with Paul and Stephanie (physical therapy and occupational therapy). He keeps getting stronger and more chipper. Yesterday's visit to Dr. Raj went very well. Tommy was happy to see Dr. Raj coming out of his office to shake his hand and tell him that he was looking good--I think that Tommy realizes that a handshake from Dr. Raj means that things are getting back to normal.

Saturday, November 8

One week with Tommy home, and what a week it's been. Very steep learning curve for both of us. The team that is taking care of him--from the Beebe Home Health Agency--is outstanding. (This agency is affiliated with Beebe Hospital in Lewes, where Tommy was taken when he had his stroke; and Beebe took such good care of him that I figured the home health agency would be very good, too.) Tommy's physical therapist, Paul, has had him walking across the living room using the walker; Paul is also working with Tommy a lot on transfers, because Tommy still has that bad habit of trying to sit down before he has completely finished pivoting. The rest of the team is Stephanie (occupational therapist), Gail (nurse and sometimes aide), Jill (speech pathologist) and Reva (aide). In one week, there have been a total of twelve visits by these folks. A typical day was yesterday: Gail came first thing in the morning and took Tommy's vital signs (all fine); Paul came at 11; then Stephanie and Reva came together after lunch to give Tommy a shower (he did very well). So, all systems are go. Today is a day of rest for both of us. It's odd not to be hanging out with our friends at Renaissance rehab--we miss so many of the staff, patients and patients' families that we got to know there. There are several with whom we now stay in touch--we all hope we'll be able to get together before too long.
The last couple of days, Tommy and I have finally begun to relax a little. Late yesterday afternoon, Tommy was napping and I was on the porch playing with Penny when I heard him call. I went to the bedroom and said, "You okay?" "Yeah," he mumbled sleepily, "I was having a dream." "Was it a good dream?" I asked. "Mm-hmm," he said. "What were you dreaming about?" I asked. "Eatin' ribs," he finally mumbled, as he dozed back off to continue the feast.

Wednesday, November 5

It's still crazy around here, with so many different health-care workers coming to work with Tommy, and with Tommy and me figuring out our new routine; but it's all good. It's almost five o'clock, and it's the first chance I've had today to sit down and tap out even these few sentences. More to come when I get caught up.
Yesterday was an exciting day, because it was Tommy's birthday--he turned 73--and he received cards from lots of family and friends and got happy-birthday calls from his kids and his sisters. And cake and ice cream for dessert, of course.

Monday, November 3

I think Tommy is enormously relieved to be home. Every once in a while at Ren, I got him to talk about his feelings, and deep down he was worried about a lot of things, even though he didn't show it much. Steve, Irv and I got him settled at home around noon on Saturday, and, so far, having him home has been manageable but difficult. A temporary setback is to be expected, because each time Tommy has been moved from one facility to another, it has taken him a couple of days to recover from the huge physical and emotional strain. So I expect he'll be more focused and relaxed in a day or two. I have to keep a very close eye on him, because even though he knows he's not supposed to try to get up by himself, he has those confusion issues and sometimes--especially right after he wakes up from a nap and his briefs are wet--he thinks he has to get in to the john by himself. So far, I have caught him early, i.e., while he's trying to inch his feet over the side of the bed, but it's unnerving.
For Tommy's meds, I bought a giant week-at-a-time pill box at Happy Harry's that looks like a Scrabble board, it has so many compartments. It took Steve and me about an hour to figure out how to organize the pills and get the right ones into the right places, but it'll be a lot easier from now on. Steve also installed the grab bars in the bathroom, with Tommy assisting (he held the box of screws, which he handed to Steve as needed). For Tommy's first evening home, I told him I'd make him a welcome-home dinner of his choice, and of course he asked for steak, mashed potatoes, broccoli and a salad. With his loose bottom teeth (which will have to be pulled soon and replaced by a new plate), he can't chew solid meat; so I got filet mignon, which Steve seasoned, grilled and sliced into very thin, small bites. Tommy was in heaven.
Yesterday morning, Steve headed home, taking Sandy with him for a visit; Sandy is a bit too rambunctious to be underfoot while Tommy regains his walking chops. Later, the visiting nurse, Jennifer, came over to assess Tommy's situation and fill us in on the schedule of nurses, therapists and aides we can expect. There will be someone coming here almost every day. Tommy's Medicare/medigap coverage will cover all of it for two months, at which time the degree of his "progress" will be assessed; if he's still progressing, he'll get coverage for another two months.
Last night, too tired to cook a meal, I gave Tommy homemade fish chowder--one of the many frozen meals Gaie made up for him while she was here. I told him, "Last night was your welcome-home meal from Steve and me, and tonight it's Gaie's welcome-home meal." He said, "This is so good. I wish I could thank Gaie personally." I said, well, maybe you can. So I dialed Gaie and Rich's number and gave Tommy the phone, and Gaie answered, and he said, "I wanted to thank you personally for this seafood chowder." It was a wonderful moment. I am so glad to have him home.

Saturday, November 1

Great Halloween party at Ren on Thursday evening. At least a hundred little kids and their parents came through to trick or treat, and there was a fabulous "haunted house" at the far end of the facility with mummies moving on guywires overhead and scary witches' cackles (although none of those cackles match therapy-assistant Pearl's cackle). Tommy wore a shark mask, and as I wheeled him through the rehab and long-term wings, he drew lots of laughs with his scary "Rr-rr-rr-rr" shark growl (do sharks growl?--who cares). This morning, he's coming home. Steve and I are getting ready to head up there right now. Yay. Stay tuned.

Wednesday, October 29

Tommy is counting the days until he comes home. Every evening, I take down the small calendar that hangs next to his get-well cards, and he makes an X with a red wax pencil on the day that is just ending. Then, we count how many more days remain before Saturday morning, November first. On the home front, things have been a little hectic getting everything done, but we're getting there. The only blip in the screen the last couple of days was Tommy being Tommy--yesterday evening, he ended up hugging his wheelchair when he tried to transfer to it unattended. Four of the Ren staffers were around him in a New York minute and quickly got him straightened out, but I was, like, a little shaken up myself. Tommy, what were you thinking?!

Sunday, October 26

A relaxed Saturday yesterday, as everyone feasted on fabulous cake (low-sugar, low-fat) that Mary and Al's daughter had baked to celebrate their 22nd wedding anniversary. After dinner, Tommy had his second and final whirlpool bath, compliments of Stephania, the same wonderful nurse's aide who gave him his earlier whirlpool bath (as opposed to the more-common shower) a month or so ago. Tommy was in heaven as he lay his head back in the tub--which looks like a big white space capsule--with the soapsuds gurgling and churning around him.

Wednesday, October 22

This afternoon the discharge-care-plan meeting for Tommy was held in the Ren rehab wing dining room. Seated around the table were Meredith, the social worker; Lorie, the head nurse of the wing; therapists Shannon (PT) and Barb (OT), and Tommy and me. The discharge date was firmed up at Saturday morning, November 1, a week from this Saturday. Preparations are going into high gear on all fronts. Equipment is getting ordered and the primary caregiver (me) will get continued training from the therapists and nursing staff on transfers; on getting Tommy in and out of the car; on setting up and following the medication regimen; and on toileting procedures. Tommy will have several visits a week from a home-health-care person and from a physical therapist. I was told to make an appointment with Dr. Raj for the first week or two after Tommy gets home, and that appointment will be Thursday afternoon, November 6.
On the big day, Steve, Irv and Patti will all help with getting Tommy home and settled, and with helping the caregiver unwind with a glass or two of red wine '-) During the meeting, one of the attendees asked Tommy, "Are you excited about going home?" "I sure am," he answered.

Monday, October 20

All went well over the weekend. We had a couple of very pleasant dinners with Mary and Al. It felt like we were out at a restaurant; there were fall-color tablecloths and centerpieces, and one of the aides, Peggy, had discovered a channel that plays classical music--not Handel's Water Music, but close. At one dinner, we were joined by Ralph, the speech pathologist who has been working individually with both Tommy and Al. Ralph has taught all of us a lot about how to prevent choking, and he's good fun, too. Al and Tommy sometimes look across the table and laugh over something that Mary and I have no clue about, and they had Ralph laughing, too. A memorable dinner. On Saturday evening, one of Tommy's favorite aides, Lu Ann, gave Tommy a shower (see photo, above right) in the rehab wing's well-equipped "spa". The spa has a few pieces of equipment that I am now researching, including the grab bars (both the placement and the lengths), and also the shower wheelchair, which I think is really well designed. At Milford rehab, Tommy's bathroom had a long Rubbermaid bench with removable arm rests--also a very good design, and probably better suited for our needs since we don't have a "roll-in" shower (we can line up his wheelchair with the bench, and then, using a sliding board, we can get Tommy across to the other seat).
On Wednesday there will be a care-plan-after-discharge meeting. The social worker, Meredith, told me some weeks back that one of the therapists will also visit the house to see what still needs to be done to make it Tommy-friendly. This visit will probably be scheduled on Wednesday, and the therapist will be able to answer my questions with a good idea of how the house is set up.

Friday, October 17

Several friends have asked lately about the best time to stop in and say hi to Tommy at Renaissance rehab. The best time is on weekends in either the morning or afternoon (say, between 10 to 12 in the morning, and 2 to 5 in the afternoon); or on weekday afternoons between around 3 and 5. Mealtime is not the best visiting time, because Tommy still requires the aid of another person, and the speech therapists want him to concentrate on eating and not much else. Renaissance rehab is about a half-hour north of our house. It's on the north side of Rt. 24, the route that runs between Rt. 113 at Millsboro and the "ocean highway" (Route 1); it's just about exactly midway between Millsboro at the west end and the Rt. 1 at the east end. If you have any questions, give me a call at 302-539-8079. If I'm not home, the phone will ring about a dozen times before voice mail kicks in; that's because it's set on "maximum number of rings" to give Tommy time to get to the phone.

Tuesday, October 14

I have said "small bites" to Tommy at least a thousand times over the last couple of months, but it finally looks like I can toss out that broken record. This evening, Tommy ate his dinner as dainty as you please--as though the size of his bites had never been a problem. It was a meal that I had brought from home--a garden salad followed by sausage and green peppers over spaghetti--and was better than Ren's fare of hamburger and fries (their food is okay but not great). I don't know whether Tommy was inspired by the food, or if the big-bite ghost just suddenly left his body to find another poor soul to haunt. In any case, it was pleasant to share a meal with Tommy without having to carp incessantly at him.

Sunday, October 12

Tommy now has a treadmill. It awaits him in the room-formerly-known-as-the-rec-room, which can probably now be called the gym, since it has a growing number of exercise machines: my Nordie elliptical exerciser, the set of pedals that attach to the wheelchair, and now the treadmill. I've been looking for one for several weeks, ever since learning about that Johns Hopkins research study showing that stroke victims who use a treadmill get far healthier than those who don't. I found it last Saturday morning, when Patti and I were hitting a couple of yard sales. Yesterday Irv and I carried it in the house and tried it out, and it's great. It's a Proform, one of the heavier, rehab-grade models. It can be cranked down to a very slow speed, and it has a well-designed safety key that attaches to the walker's belt loop. Once Tommy gets home, he will have three physical-therapy sessions a week for several months. Being able to use the treadmill may not be feasible right away; but maybe, under the supervision of the physical therapist, he can move in that direction. Happy to say, I can cross "get a treadmill" off my to-do list, which is long with a capital L these days.

Wednesday, October 8

Tonight at dinner, I reminded Tommy that he has only three weeks to go, and then he will come home. He wants to come home, but he trusts what Tim, Shannon and the other therapists and caregivers have told him--that the longer he stays there and improves in therapy, the better his chances of continuing a strong recovery once he gets home. Today, with Shannon, he walked in the hallways, and his gait, balance and strength continue to improve. He still needs to work on transfers and eating issues. The other evening, I asked him if he was up for this final push at Ren rehab. He nodded and said, "Focus factor." I said what? He said, "Focus factor--that's what it's about." Never heard of focus factor before, but it makes sense.

Sunday, October 5

Things are getting very busy here, now that the countdown is solid: Friday, October 31. The house is ready, except for details such as installing grab bars, and also answering the question, should I get Tommy a hospital bed? Different advice from different people. I am thinking that the solution is to take the two narrower-than-twin beds out of the back bedroom, and put a "hospital-grade" bed in there that doesn't necessarily look like a hospital bed. It has to be able to do the tricks (spine and knees raised into a zig-zag contour, sitting position, and entire bed can be raised and lowered). I also want it to have side rails that can be raised or lowered, and maybe even removable when you just want to use the bed as a regular bed. The bed at Ren rehab has rails on both sides, which Tommy uses to pull himself up from the wheelchair (makes me think that the bed must weigh a ton). If we put such a bed in the back bedroom, we'll have a heavy-duty bed if we need it, but Tommy won't have to sleep in it if he doesn't want to and he can handle the regular bed.

Thursday, October 2

Over a single day it's difficult to see Tommy's progress, but when viewed week to week it's obvious. This week, Tommy has improved in doing his transfers, although he still has trouble if he has to move in the direction of his still-recovering right leg. That is, when he has to begin the sequence of small steps with his left leg, it's easier because then he's only bringing his right leg along, not leading with it. Shannon has been putting Tommy through these paces and it helps that Tommy's earlier distraction problem is fading; he is paying closer attention all the time. On Tuesday, Shannon asked me to assist Tommy in a transfer (from a wheelchair to an upholstered chair pulled alongside), and Tommy did very well; but again, he did better moving to his left than he did on the return trip. Tommy is also getting stronger at lifting himself out of his wheelchair when using grab bars on the wall, but in general he needs to practice all aspects of these transfers until they become pretty much bombproof.

Tuesday, September 30

Good progress for Tommy the last couple of days, especially with Shannon in walking and continuing to master transfers. Speech pathologist Ralph has been working more intensively with Tommy during meals in an effort to help him master the pacing of food and drink intake...i.e., a small bite followed by a small sip; not three giant bites followed by four giant gulps. The speech therapists are concerned about aspiration--i.e., a particle of food or drink going down the wrong pipe into the lungs, which can lead to pneumonia.

Sunday, September 28

Another fun weekend. Tommy got a lot of rest on Saturday; for dinner, he and I joined Rosemary and her daughter, Sue (a veterinary surgical nurse, so you can be sure the table talk was interesting). Afterward, with Rosemary's fluffy pomeranian, Foxy Lady, leading the way, we all hiked down through the long-term-resident wing to the facility's roofed patio. There, we found Bill and Allan, who we often see out there. The patio conversation again revolved around Sue's stories of life in the pet-operating room; Tommy didn't say much but listened as intently as the rest of us. Over the weekend, Tommy talked on the phone with a half-dozen family members and friends, which always perks him up.

Friday, September 26

Because the blog site, for some reason, wouldn't let me in for several days, I was unable to make entries. I finally got in this evening. I don't know how these sites work, but I wonder if it sometimes gets overloaded with users. So--to the subject of the old man. Tommy has been progressing this week on all fronts except the eating/swallowing function. As far as strength and mobility, he can now pull himself up to a standing position with the help of grab bars, but he still needs work on pivoting, using a walker and walking with an assist. The therapy department folks believe that Tommy can and should master these things before coming home, so they have just moved his discharge date to Oct. 31.

Tuesday, September 23

The plans are going into place for Tommy's homecoming. His tentative discharge date remains Oct. 4, although the therapy department may extend it a week or two more. But, barring a setback, it will be October. In therapy, Tommy continues to work hard for Shannon, Heather and the others. Last week, Red taught Tommy how to use the sliding board. (Red left Ren rehab at the end of last week. We were really sorry to see her go. She was lively, fun and very good at what she did. She helped Tommy a lot.) Tommy is comfy in the Rehab wing; he's getting great care from the nursing staff and he likes to sit with Rosemary, Willie Mae and Al. Tommy has been eating unusually well this past week, compliments of Gaie, who has made fish chowder, pot roast and quiche for him.
At home, the ramp and new shower are ready, and Gaie and I are figuring out where the sidebars will go. I've ordered a pedaling machine for Tommy to use. I'm in the midst of learning exactly what is required to set up the next stage of Medicare-covered supplies and services once Tommy gets home, including home health care and therapy. Gaie, who teaches nursing at Eastern Michigan University, has been my go-to girl for a lot of that, all the way through.
We heard from Marty Wolfe this week (thanks, Mike, for letting him know about Tommy), and Tommy and Marty are going to talk tonight. Old buddy Frank Carr stopped by twice this weekend, during his recent trip to South Bethany, and Tommy was thrilled to see him walk in the room. "Hi Frank!" he called in a strong voice (the first time I have heard that voice since before the stroke). For those of you who would like to talk with the old man, a good way to do this is for you to call on our home phone (302-539-8079) and let me know. Then, I'll place a call for him to you, just before dinnertime, during the next day or two. Hmmm. Next week would be a great time for Tommy to catch up with his old pals... hint hint.

Sunday, September 21

Sundays at Ren rehab are pleasant. All the patients who were bushed by the end of the week have taken Saturday to catch up, so by Sunday everybody is pretty mellow. Today was even better because it was a perfect sunny autumn day. Lots of family and friends visited the wing, and by now we all know each other. Amid the hubbub of kids working puzzles and one patient's four-generation family contingent, Rosemary took the cake. She sat in her wheelchair with her five-pound Pomeranian, Foxy, in her lap. Meanwhile, Rosemary's daughter, who was pushing her wheelchair, was walking a miniature dachschund named Noodle, whose leash was attached with a carabiner to the loop of her jeans. It was a sight to behold. Rosemary is one of Tommy's new buddies around the place; two of his old buddies, with whom he always ate breakfast, were discharged last week. For dinner, Tommy got a special meal prepared by Gaie, who is visiting from Michigan--quiche with a spaghetti-squash crust. He savored every bite.

Friday, September 19

All's well the last couple of days. No setbacks. With help from physical therapist Red, Tommy now knows how to transfer from wheelchair to bed using a wooden sliding board. He continues to walk very well with Shannon. Our friend Gaie, who just arrived for a visit, went with me today to see Tommy, and when he saw her, he said, "You look like a flower." During dinner, we were joined by speech pathologist Ralph, who said Tommy's eating and swallowing have improved over last week. Two good days.

Wednesday, September 17

Today, Tommy walked very well with Shannon at his side; his balance continues to improve. However, he's still not getting the pivots and transfers down, so Red told me that they are going to bring a "sliding board" into the mix. A sliding board can serve as a backup for those times when standing-and-pivoting transfers are too risky. A strong, thin board (the ones I've seen are heavy plastic), it can be inserted partway under the rump of the person and extend to the target sitting spot--it provides a continuous, sliding surface from point A to point B. So, for example, if the person is sitting in a wheelchair, you can line the wheelchair up next to the bed, remove the wheelchair's armrest, insert the sliding board across to the bed, and then (with help from the sitting person) slide that person across the bridged gap, at a slight diagonal angle, without doing any lifting. At least, I think this is how it works....I'll be learning more about it in rehab.

Tuesday, September 16

Several of you have asked me questions about yesterday's post--specifically, why has his discharge been delayed if he's advancing so well with walking. Yes, it's true that Tommy's progress with walking has been encouraging; but remember, he has had a lot of sessions, even dating back to his time at Milford Rehab during the month of July, when he was walking along the parallel bars. So, he's been working up to being able to walk for a long time. But there are other skills where he needs a lot more practice. For example, he needs to learn to pivot--that's when he stands up in front of, say, a bed, and he needs
to sit down in a wheelchair that's sitting alongside the bed. Before he can sit down again, he needs to "pivot"; i.e., he needs to move his feet in a simple turning pattern--with assistance from one person--so that his back is no longer facing the bed, but is instead facing the wheelchair. As with other seemingly simple tasks that Tommy has had to relearn, such as swallowing or standing up, it's more complicated than one would think. Think of riding a bike or driving a car; it seems seamless to us now, but when we were first learning, the number of individual things to remember and integrate was daunting. Also, Tommy needs to learn how to reach back behind him to find the armrest of the chair or the side of the bed before he commits himself to sitting down. And, of course, he needs to become more dependable at being able to stand up at all--that is, sometimes he stands up without weight-bearing help from the person assisting, but sometimes he doesn't--and on those occasions when he doesn't stand by himself, it can take a toll on the back of the person assisting him. (I was chatting with one of Tommy's nurses, who told me that the backs of most nursing aides are "shot" by age 40 because of so many years of lifting.) These are all basic necessities before Tommy can come home, where, for much of the time, only one person (that would be me) will be available to assist him.

Monday, September 15

This morning I learned from the social worker at Ren rehab that Tommy's discharge date has been moved from Sept. 20 to Oct. 4. Tommy has been progressing well in terms of walking and general regaining of strength, but he needs improvement in other areas, including transfers and swallowing. Tommy also needs to voice his wants and needs, a task that is complicated by the fact that he has periods of confusion (I suspect that the reason he clams up at times is because that's what's going on). Occasionally, for example, Tommy says things to me that reveal that at that moment he thinks that he lives in DC, or that he still runs the boatyard, or even that he is working at the car dealership in Georgetown (where he worked before he began to repair boats). It's interesting that, when I realize he's confused in this way, I get him back to "now" by asking him if he has dogs; and when he says yes, by asking what their names are. He always remembers Penny and Sandy.

Saturday, September 13

Today was Janis' last day here, so we splurged on a crabcake dinner. Tommy's newest buddy at Ren rehab, Rosemary, joined us at the table. She is a blast and we had a great time. During the meal, speech pathologist Ralph also checked in with Tommy from time to time to make sure that he was swallowing okay. He's been having a problem this week with dry food getting caught on its way down, so we need to make sure that he takes a sip of his beverage between every bite or so.

Friday, September 12

Today Tommy led a parade. Tommy was at the center--walking the entire circular route of Ren center's interior hallway, resting only once. The total distance was roughly halfway around our house. With no walker! Marching with him were therapy-assistant Pearl at his right and therapist Shannon on his left. No marching band, but Janis--bringing up the rear with the wheelchair--sang out steady praise as he stepped along briskly. No majorette, but I walked backwards ahead of the cluster, taking pictures with the camera. Along the route, staffers and patients congratulated him. "Way to go, Tom!" called his pal Bill, who has also progressed from walker to free walking. "Look at you!" said Meredith, Ren's social worker, as she passed by.
In the evening, Janis and I joined Irv at the VFW bar (with its splendid view of the sunset over Indian River) for some perfect comfort food--pork and sauerkraut with a side of mashed potatoes. A great day.

Thursday, September 11

Today was nonstop therapy for Tommy. He was a little tired because one of his buddies, Craig, was discharged last night to his home, and the nursing staff threw a little party for him. Usually, Tommy is in bed by around 7, but by the time they'd had their cake and milk, it was a good hour later. Speaking of discharges, during the afternoon I met with Pam, the finance person at Ren rehab--now that Tommy's own discharge is approaching, I must get a firm handle on the next chapter of Medicare hell. I could immediately see that this will be another "interesting" challenge when she began a sentence, "We can't skill a person if..." "Excuse me," I interrupted, "Did you say skill a person?" "Yes," she said; "Am I confusing you?" "Uh," I said. "I've never actually heard skill used as a verb..." She was patient with my many questions. I have learned that, among others, there are the Romance languages, the Indo-Tibetan languages, and the Healthcare languages.

Wednesday, September 10

This morning--for the first time, and with Shannon and Pearl at his sides--Tommy walked a few steps without his walker. It happened in the therapy department's outside courtyard.
We were in the courtyard because, a few minutes earlier when Tommy was walking the hallway with his walker, with Shannon at his side and me following with the wheelchair, he pointed through the window to the courtyard. Shannon asked, "Do you want to go out there?" and Tommy nodded yes. This was a very good moment, because Tommy was asking for something he wanted rather than being passive. The therapists have explained to me that part of Tommy's recovery is making his needs and wishes known, and I have been impressed by the way that Tim and Barb, and now Shannon and Red, have all responded to Tommy, on those rare occasions when he asks for something, by immediately doing all they can to give him what he has asked for. The same is true of the nursing staff. But I digress.
Once we got Tommy wheeled out into the courtyard, Shannon brought a small beach ball outside for Tommy to throw to me. The game was that I would stand like a statue and if the ball hit me, I would give Tommy a kiss. Then, with assists from Shannon and Pearl, Tommy stood up and, with them holding him at his sides, he continued the game, tentatively aiming and dropping the ball in my direction. After a few minutes of this, as Tommy got his sea legs, Shannon said he thought Tommy was ready to take a few steps. Indeed, he was; he walked about ten steps to collect his kiss. We were all excited by it. Later, Janis and I joined Tommy for dinner; we brought him crab cakes from Pizza Palace; but alas, Pizza Palace seasons the crab cakes much as they do their excellent pizzas, which is to say the crab cakes were too spicy. Looks like it's time for another carry-out pilgrimage down to my poker group's favorite beach eatery--the Crabcake Factory in north O.C.

Tuesday, September 9

A good day all around. Tommy's physical-therapy schedule is now firmed up--he'll have Shannon on Mondays, Wednesdays and Fridays, and Loretta (whose nickname is Red, for her long red hair) on Tuesdays and Thursdays. This morning Red gave Tommy a good workout, and a speech-therapist joined him and Janis for lunch. Tommy is still on a "mechanical soft" diet; i.e., the food is midway between solid and pureed. This weird food category is most noticeable with meat; a "mech-soft" pork chop, for example, looks kind of like a pile of chopped-up rubber bands. But until Tommy can limit the size of his bites, the speech therapist will keep him on this regimen. Today, she also directed that Tommy not be given straws; this is because he continues to sip too much too fast (rather than taking one sip at a time), which leads to coughing fits. Our dinner was quite fine--I brought steamed shrimp and Pat, the wife of Tommy's roommate Mike, brought a big box of Popeye's chicken. After dinner, Tommy had a long phone chat with his son Steve. So things are back on track after yesterday's turmoil.

Monday, September 8

Just after lunch, we had a scare when the nurses at Ren rehab thought that Tommy might be having a heart attack. His symptoms included pains in his chest and arm, not to mention his "deer-in-the-headlights" look and muteness once he was surrounded by a flurry of staffers hooking him up to an oxygen tank, putting nitroglycerin under his tongue, and other stuff. So off they sent him to Beebe Hospital in an ambulance (with me riding in front and Janis following in her car). Thank goodness, after Tommy had an EKG, heart-enzyme workup, chest X ray and other procedures, the doctor there determined that his heart was fine and that the symptoms may have resulted from Tommy leaning too much on his walker during morning therapy. We were all back at Ren rehab by dark, and after some hot vegetable soup with fresh parmesan-tossed corn I'd brought him from home, he was his old self. It'll be "therapy-lite" for a couple of days, but after that the old man should be as good as new.

Sunday, September 7

Tommy had a very good weekend, with both Janis and me waiting on him, and with lots of laughs with our friends at the rehab center. In general, Tommy's strength continues to return. I found out on Friday the good news that he will have Shannon as his physical therapist (Shannon was a part-time therapist at Milford Rehab, and Tommy had a couple of good sessions with him there). Also, tomorrow his occupational therapist Barb returns from her vacation. So, all systems are go.

Friday, September 5

After dinner this evening, Tommy had a speech-therapy session with a nice fellow named Ralph, who hadn't met Tommy before. It was very entertaining to witness. "Ok, Tom," Ralph said; "I'm going to start a phrase, and you finish it. How are...?" "You," said Tommy. "Very good," said Ralph. This went on a while until Ralph said, "Oops, I dropped the ..." "Boat," said Tommy. "Boat?" said Ralph. "Yes, I dropped the boat." "Uh, okay," Ralph said dubiously as he made a checkmark on his worksheet. "Most people would say the phone or the ball, but a boat...okay." Further into the session, Ralph said, "Now Tom, I'll start a sentence and you finish it." After a few of these, Ralph said, "I like to drive a ..." "Travelift," said Tommy. "A what?" said Ralph. "A Travelift," said Tommy. "That's what I was driving when I dropped the boat."

Thursday, September 4

Today things seem to be getting back on track. Heather, who is filling in for Barb this week for Tommy's OT sessions, reported that this morning Tommy was far more talkative than he's been before, and that he made her laugh. "I asked him if he was growing a beard," she told me when I arrived at Ren rehab; "and he said yes. So I asked, 'Do you want to shave it off?' And he said, 'No--I don't want to ruin my image'"! She did help him to trim his beard, however, which he did quite well. In the afternoon Elaine and Alan arrived, once again bearing a big box of tomatoes and green peppers from their garden, and they joined Tommy at dinner.

Wednesday, September 3

Today was Tommy's last physical-therapy session with Tim, who appears in several of the photographs above. Tim has been such a great help to Tommy, and we wished him best of luck in his pursuit of a career in real estate in Rehoboth Beach. We gave him a small gift in appreciation, which Tommy handed to him, almost shyly. "You have all the tools to get well," Tim told Tommy; "and you've been working hard. Keep it up and you'll just keep getting better." We'll know in the next couple of days who his new physical therapist will be. Meanwhile, his occupational therapist, Barb, has been on vacation this week; and while the other OT staffers have been working with Tommy, we'll be glad to see Barb back again on Monday--Barb also has been very good with Tommy, and it's that continuity issue again. This whole week, actually, has been difficult for both Tommy and me. The long Labor Day weekend followed by changes with Tim and Barb have set Tommy back a bit with therapy and also with the bladder-control program. It's been a slog for me, too; on the home front, the shower renovation (as with any work on this house) has led to more complications and so is still ongoing; and I also got very worrisome news about one of my beloved cousins. There will be weeks like this, and this has been one of them. We do look forward to a visit tomorrow from Tommy's sister and brother-in-law, Elaine and Alan; and this Saturday our dear friend Janis arrives for a weeklong visit. So things are looking up.

Monday, September 1

It's Labor Day, so Tommy got a vacation from therapy. Instead, this afternoon, we watched Planet of the Apes with several other patients and their families on the rehab center's large-screen tv. Tommy worked hard all week and earned this day of rest. Yesterday, in his OT session, he propelled his wheelchair (with his arms and one leg) with much improved agility, and for quite a distance.

Sunday, August 31

Today at Ren rehab I met a woman whose husband just came there a couple of days ago. He had a stroke, she told me, in late July--a month after Tommy had his (Tommy's was in late June, her husband's was in late July). As she told me about his stroke, her eyes began to tear up. Oh Lord, I thought, as I listened to her, I know just where she's at. "He can't talk," she told me; "and his whole right side is paralyzed." I had seen her in the rehab wing the last couple of days, coming and going; very young looking (at least compared with me), with a fresh lovely face and long reddish-brown hair. We talked for a few minutes, and I found out that she's a few years younger than I am, and he's a few years older than Tommy is. "It'll be okay," I said to her; "this is a good place and the rehab people will help him a lot." So, when I got home this evening, Irv was here, taking the dogs out for their evening run. I told him about my encounter in the rehab wing. "It was weird," I told Irv; "I felt like I was so far ahead of her, because....because..." And, Irv finished my sentence...."because, you were a month ahead of her." "Yes," I said. A month. There are times when a month seems like a thousand years, and it seems like you've known an old friend--like Irv--for that long as well.

Friday, August 29

Where did the summer go? Hard to believe we're moving into fall, and Tommy is moving into the home stretch. This weekend, my visits to Tommy will have to be at odd hours, because the route to and from Ren rehab is along the dreaded "beach route," which means hours-long traffic back-ups if you time it wrong. Today, Tommy got a new roommate, Mike, who is a really nice fellow. In therapy, Tommy walked the hall and also spent 15 minutes on his favorite exercise machine--I don't know what it's called, but he sits in it and pushes his feet forward and backward while he pushes and pulls forward and backward with his arms as well. Actually, it's a lot like my elliptical exerciser. Tommy says that he would love to get this machine for home, so I'm going to search around.
Starting on Tuesday, work on the bathroom shower will be finished. Once that's done, a therapist from Ren rehab will make a home visit. Originally, Tim was scheduled to do it but, alas, he told us this week that he has decided to leave Ren rehab (his last day is next Wednesday) and will try his hand at real estate. He has helped Tommy so much. What a loss for the physical therapy profession.
NOTE: I have noticed that the last two or three of my posts have been delayed by hours and even for a day or two--it seems that the blog site has been undergoing "construction" issues and apparently that's the reason. I'm hoping we'll be back on track soon.

Thursday, August 28

Today, Tommy's roommate, Pat, is leaving to go home, where he will have in-home cardio therapy sessions three times a week. Pat and his wife Ruth have been good company for Tommy, as well as for me, and we'll miss them. Pat was an airline mechanic and restored his old T-bird, so he and Tommy have a lot in common. They also agreed on the room temperature (71), which I have learned can be a thorny issue in such situations!
We've gotten to know so many people throughout this experience--patients, family members of patients, staff members. I've been staying in touch with a growing number of them, including Pat and Ruth, and we are hoping to get together in the future when everybody is back into their respective homes and routines. In the meantime, several of the guy patients who already are at home return every few days to visit Tommy. Since most of them have boats and like to fish, they have a lot to talk about. Although they do most of the talking, Tommy holds up his end of the conversations with comments and an occasional laugh.

Tuesday, August 26

Today, Tim reiterated that, although Tommy's tentative discharge date had been set for Sept. 6, it will be moved to Sept. 15 at the earliest, with more possible moves to a later date depending on his continuing progress. Tommy is definitely progressing with walking and transfers, but there are areas that require continuing improvement. He is approaching the point where transfers will be possible with one person assisting, rather than two; and his bathroom issues are also improving. There is also a worrisome sore on one of his legs that must heal before he leaves the nurses' care; because he scratches it during the night, it has continued to be a problem.
Dr. Aurigemma told me several weeks ago that the chance of a stroke victim having another stroke is 30 percent--distressingly high odds. I wondered if that statistic included people who took poor care of themselves following the stroke, such as continuing to smoke or not exercising. Because my old pal Nancy, who writes on health issues for US News and World Report magazine, has been doing research for me along the way on my "stroke questions", I asked her what kind of research there is on this question. Yesterday, she e-mailed me a very encouraging news report about the results of a just-completed study led by Johns Hopkins researchers. It found that stroke victims who use a treadmill show far more significant improvement in their recovery than had been previously thought; the exercising stimulates the brain to lay down new pathways, recruiting parts of the brain that weren't trashed by the stroke. At home, we already have my elliptical exerciser, and with Tim's help I'm buying the same pedaling machine for Tommy that they use at the rehab gym--and now a treadmill sounds like a good addition, too. Maybe we should just turn the living room into a big gym!

Monday, August 25

Late yesterday evening Tommy's son Steve drove out here from Manassas so that he could spend the day with Tommy at Ren rehab. When he called Sunday afternoon and told Tommy he would be coming, Tommy answered, "Looks like I'll have to be on my best behavior." He was. When Steve and I arrived, Tommy's eyes lit up and he said, "Well hello, son." In his morning physical-therapy session, he walked the full length of the hallway with Tim giving only minimal assistance and Steve bringing up the rear with the wheelchair. Tim pronounced it Tommy's best walk so far. "He's just showing off for me," said Steve, beaming, as Tommy sat quietly with that puckish expression he gets when he's trying not to laugh. At lunchtime I headed home, and the guys hung out together for the rest of the day. During the afternoon, they were back in the rehab gym with occupational therapist Barb, who put Tommy through standing-and-sitting drills. Before leaving for home after dinner, Steve helped Tommy call me on his cell phone; he is in the process of relearning how to use it. After we all said our hellos and it was time for Tommy to end the call by closing the lid, I could hear Steve's voice in the background, punctuated by loud intermittent beeps: "No, Pop, you gotta take your thumb off the buttons so you can close the phone...can you open your hand?...can you open your hand?...open your hand..." It's that right-hand ungrasping problem, still holding on; how odd to hear someone else's voice over the phone, saying what I have said so many times myself.

Sunday, August 24

So this afternoon at the end of lunch, Tommy and I were sitting at a table with Catherine and Ann, two other patients at Ren rehab, when a hefty woman with voice to match strode past the tables saying, "Who wants to play bingo? Bingo at two! Follow me!" We followed the bingo barker, and--with aides pushing our two companions in their wheelchairs--we ended up around a table in the large, sunny rec room of Ren's residential section, a community of about 60 souls. We were early--it was a quarter to two--so as other Ren denizens continued to arrive we watched the Olympics on the wall-mounted large-screen TV. The Italian rhythmic gymnastic team was performing a breathtaking routine that involved porpoise-like dives through large hoops amid other remarkable feats of synchronized hoop-flinging and tumbling. At the end of their jaw-dropping performance, the cameras cut to the faces of the Russian women, who up to that moment had gold in their grasp. Whew--the Italians scored high but the Russians were still on top, with two teams to go. I was transfixed. But--alas--back at the other games, cards and plastic markers had been passed out and the bingo barker, at just that moment, walked over to the tv and shut it off. The room was filled with several dozen people, but nobody except Ann and I, who had been sharing comments as we watched, seemed to notice. Instead, for the next hour, the room was filled with the sound of a metal basket with small wooden balls being turned around and around, as our barker yelled out numbers--"B fourteen...B fourTEEN!" Ann won two bingos, Catherine one, and Tommy--although he assiduously placed the markers on his card--none. I found myself disappointed for our table-mates that there was no prize for winning a bingo. And I still don't know who won gold in that other contest--the one that was on tv. The one that was in another universe.

Saturday, August 23

Today I could tell that Tommy was worried about something, and he finally asked: How will he get into the house when he comes home? I explained to him, step by step, exactly how it will work with the ramp at the front of the house.
Prior to Tommy's return, Tim--his physical therapist--will visit our house and make any recommendations about what else we still need to do to make it "Tommy friendly." All of the area rugs are gone, of course; and the threshholds between rooms have been streamlined to prevent stumbling. It's great that it's a one-story house, with the porch and back deck also easily accessible--only the rec room at the far end will be inaccessible to Tommy, at least for a while, as it is one step down from the rest of the house. The other big modification--the shower that will go into the master bathroom--is still awaiting completion pending delivery of the shower floor.

Friday, August 22

As Tommy's ability to stand, pivot and walk have improved over this past week, so has his ability to help with transfers. The nurse's aides have gradually phased out the use of the Hoyer lift (the big metal "stork on wheels" that lifted him from bed to wheelchair and vice versa), and Tommy is now officially a "Max-2"--i.e., maximum assistance on transfers, with two people assisting. Also, because he can now stand (with assistance, and using a grab bar), the aides are able to take him into the bathroom so that he can get back to using those facilities. This is really important, because Tommy is just beginning to regain the skills associated with body plumbing--skills that we take so for granted when we're mobile and when we can take action as soon as we get the urge. Those plumbing skills get rusty when mobility comes to a sudden halt, so now Tommy is on a two-hour bladder-retraining schedule.

Wednesday, August 20

Just before dinner tonight, we got a delightful visit from Qwanteisha, who was one of Tommy's favorite nurse's aides at Milford Rehab. (She is pictured at Tommy's left shoulder in the photo above labeled "What a day!") "Do you remember me?" she asked him with a hug, followed by, "Are you still gonna take me out on your boat?" He smiled nonstop. "Ohhh, you got a haircut, you look so handsome!" she continued. "Do the ladies like your blue eyes here as much as we did?" She got those blue eyes twinkling, just as she had done at Milford.

Tuesday, August 19

Everything went well today. Several times this morning, with physical therapist Tim assisting, Tommy walked across the gym using the walker, and then turned around and returned to his starting point (turning is more difficult than walking in a straight line). Tim says that since Friday Tommy has shown terrific progress. This afternoon, Tommy got a haircut and beard trim at Ren's barber shop. For dinner, he feasted on a jumbo lump crabcake that I brought him from the incomparable Crabcake Factory in North Ocean City, where I had met my D.C. pal Nancy (at the beach for a week with her family) for breakfast. Add to Tommy's crabcake a salad made with veggies from his sister Elaine's garden, and fresh local-grown strawberries over vanilla ice cream, and Tommy was one happy fella.

Monday, August 18

Today, both Tim and Barb, Tommy's physical and occupational therapists, worked with Tommy in the morning, because--as Tim later told me--they've noticed that Tommy is quite attentive in the mornings, but that as the afternoon wears on he fades. Definitely true. It has worked out well for Tommy to have several morning therapy sessions for another reason--it means that the nursing staff has to get Tommy up and dressed before breakfast. He still has those decadent "breakfast in bed" mornings (usually because the nursing staff is stretched thin, which happens a lot), but the therapists are seeing to it that they are few and far between--a good thing. Even Tommy's speech therapist, Holly, said during an afternoon session with him today that she is going to try to see him in the morning tomorrow, between his other therapy sessions, because, in her words, "I saw him in physical therapy this morning, and I couldn't believe how well he was doing."

Sunday, August 17

A quiet day. Right after lunch, Tommy had an hour of physical therapy with yet another part-time weekend therapist, who worked with him on the walking bars and also had him pedal for 15 minutes. Tommy was quite tired, which often happens on the weekends. During the afternoon, he took some ribbing from Holly, one of the nurse's aides, about how all the women love his blue eyes. Then Chuck, one of the other rehab patients, chimed in. "I want your autograph--you're a celebrity," he told Tommy. "Were you a ladies' man when you were younger?" That got a rare laugh out of Tommy.

Saturday, August 16

Tommy had only one session today, in the afternoon with "weekend therapist" Pam, but he made it pay. Three times, with Pam assisting, he walked the length of the walking bars, turned around (something he has never done before) and walked back to his starting point. Quite an accomplishment. Later, during dinner, our friend Patti visited. All that, and fresh raspberries over ice cream for dessert. A very nice day.

Friday, August 15

In some ways, it's been a long tunnel since June 23, when Tommy was taken to Beebe Hospital in an ambulance. Which is to say that this week, for the first time, both Tommy and I are "coming to"--asking "What hit us?". It has affected us differently: Tommy has begun expressing his feelings this week, beginning with a short meeting he and I had with his Ren rehab doctor, Dr. Aurigemma, a very warm man who couldn't get Tommy to answer his questions. In an effort to help, I said, "Tommy, tell Dr. Aurigemma about what you did in Washington." After a very long pause, Tommy said, "I sit here like a dummy." It was the saddest moment I've experienced since this whole thing happened. I know that Tommy feels safe and comfortable at Ren rehab (as he did at Milford), and that he's working hard for Tim, Barb and Holly--his PT, OT, and speech therapists, and that he likes the nurses and aides (who, of course, are enchanted with his blue eyes); but at that moment his despair cut through, and it was difficult for me not to cry. So, for Tommy, coming out of the tunnel means that he is expressing his feelings, which Dr. Aurigemma told me later, in private, is a good thing, even as it's painful. For me, coming out of the crisis tunnel means that I have been feeling a lot more mortal this week, and also am sleeping more than I had been.
But, all that said, the news on the whole is good. The ramp is now finished and looks great. And, yesterday afternoon at Ren rehab, the first staff-assessment meeting was held; and Tommy and I were asked to attend. Tim represented the therapists, while the rehab head nurse, Judy, represented the "caregivers"--the nurses and aides. The purpose of these meetings is to assess how Tommy is doing, to set "realistic" goals for him, to discuss any problems anyone may have, and to review the very tentative date for his discharge to home. So, in order: Regarding progress, the therapists agree that Tommy is working hard and making good progress. Regarding goals: The long-term PT goal is for Tommy to walk short distances (c. 11-20 feet) using a walker, with one person assisting; and, for transfers, to be at the "minimum-assist level" (e.g., to be able to take 75 percent of his own weight for a transfer, such as while standing up and pivoting from bed to wheelchair). For OT, the goals are for Tommy to be able to dress his upper body; to groom and feed himself; to overcome the "ungrasp" problem he has with his right hand; and to be able to propel himself in his wheelchair. Regarding any problems: The only one I mentioned is an ongoing problem with the laundry situation--his sweat pants keep disappearing! (Thank heaven for the good folks at the thrift shop where I volunteer on Wednesday afternoons, who keep watch for men's XL sweat pants that come in the back door.) Finally, the tentative discharge date, which was set when Tommy first arrived, remains at Sept. 6, but Tim stated that it will almost definitely be moved to later in the month.

Wednesday, August 13

Yesterday after dinner, Tommy was treated to his first whirlpool bath--as the jets churned away, he was apprehensive at first, but he finally relaxed back in the impressive cradle-like contraption. The nurse's aide, Stefania, and I placed a warm washcloth over his eyes and then washed and sprayed him. He was in heaven. Today was another good day for Tommy--physical therapy in the morning with Tim, occupational therapy in the afternoon with Barb, and quite a decent beef pot pie for dinner, supplemented by gazpacho and fresh blueberries that I brought from home. When I left, he was watching the movie "War Games" on tv, tucked in and contented.

Monday, August 11

This afternoon's therapy session was very good, with OT therapist Barb taking the lead and PT therapist Loretta (called "Red" for her long curly hair) offering some intensive follow-up. The high point was Tommy using a walker with the two of them on either side and Pearl, the therapy department's assistant, following close behind with the wheelchair. Tommy walked about 15 feet. Afterward, with Red, he practiced pulling himself up from his wheelchair to a standing position, with his hands on a walking bar in front of him. (Red showed me something I hadn't realized--it's easier to pull yourself up than to push yourself up; i.e., it's easier to stand up by pulling on the bar than it is to stand up by pushing down against the wheelchair's armrests.) All of these efforts are aimed at the goals of Tommy being able to help a single caregiver with his own "transfers" (i.e., the "moderate assist" level) and of being able to use a walker assisted by one caregiver.
When Tommy's sister Elaine came yesterday, she brought us a huge box of tomatoes and cucumbers from her garden. Time to make up a huge batch of tomato sauce and freeze it in small containers. Tommy and I will have many delicious spaghetti dinners--thanks, Elaine!

Sunday, August 10

Today was a very quiet day, except for the weather--a hellacious storm with huge hailstones pounded through in the early afternoon. Although Tommy had no therapy sessions, he was visited in the afternoon by his two sisters and their husbands--Elaine and Alan, and Rosalie and Bob (who are on their annual trip north from Florida).

Saturday, August 9

The Ren rehab wing was quiet today, and the weather was fabulous, so between Tommy's two therapy sessions we sat on the outside porch and visited with some of the other patients. (Although Tommy doesn't say much, he always listens intently.)
Tommy's morning session was with a part-time physical therapist named Kirstie. After working with him at the walking bars, she discussed Tommy's difficulty advancing his right leg and his related problem of shifting his weight from side to side. She is recommending to Tim, Tommy's regular PT therapist, that Tommy be given some practice on a walker (with two therapists assisting). Tommy's right leg is still unresponsive--i.e., not getting the messages from his brain--but his right arm and hand, which were also unresponsive after the stroke, have shown steady improvement, and the therapists have explained that it is common for the leg to be the last part of the body to come back on line.
At the suggestion of one of the therapists, Tommy is now keeping a journal--each afternoon he dictates an entry to me, which I write in his black-and-white composition book. In his entry this afternoon he mentioned that he was "glad he had Kirstie because she showed an interest in me." Every few days, he reads the entries aloud and we talk about them (as we do with his photo album of family and friends).
Now that Tommy's diet has been upgraded to "mechanical soft", the food on his tray is actually recognizable. And he can now eat actual salads: While he napped before dinner, I cut up a peach and banana for him, which he polished off before his dinner tray even arrived. No surprise that there's a definite lift in his mood during mealtimes.

Friday, August 8

The wheelchair ramp at the front door is almost finished, thanks to Irv and Daniel. After meeting with Daniel this morning to go over a few last-minute design questions, I headed up to Ren rehab. Tommy was very tired today; although he was clearly making an effort, he was slow on the uptake in both therapy sessions. The therapists continue to flesh out their understanding of how to work with Tommy; they're very good and have a variety of approaches. On the whole, Tommy and I both kind of sleepwalked through the day--glad it's Friday and we can slow down a bit over the weekend.

Thursday, August 7

The last couple of days, Tommy has been getting into the routine at Ren rehab. Today he had three therapy sessions--PT, OT and speech--two in the morning, one after lunch. Practice included "scooting" from wheelchair to raised platform (with significant help), standing at a counter (ditto) and eating a banana (no help needed there). With his passage of the banana test--i.e., successfully chewing and swallowing it with no coughing--the speech therapist, Holly, upgraded his diet to "mechanical soft", which means that instead of "baby food" he can now eat spaghetti sauce, crumbled bacon and other relatively recognizable food. We spent the late afternoon working a puzzle on the facility's only outdoor porch, and at dinner Tommy was delighted with the goodies I brought him from home to supplement the cafeteria fare--gazpacho and, to top his frozen yogurt, pureed blackberries.

Tuesday, August 5

It's been a week since Tommy arrived at Ren rehab, but it seems like only today that he, and I, are finally getting over the exhaustion of it all. It seemed like the first "normal" day since the move. As the therapists get to know Tommy, they're beginning to build on the progress he made at Milford. Today he had therapy in the morning and afternoon, where he had a good bit of practice standing up, and also of "pedaling" an ingenious contraption that attaches to the front of the wheelchair. For the pedaling practice, Tim, the physical therapist, has been taking Tommy outside to the cobblestoned courtyard, a special treat. Tommy needs to do things over and over, says Tim--it's all about relearning through repetition, about laying down new pathways from the brain to the various parts of the body.

Monday, August 4

Some momentum in Tommy's physical therapy was lost when Tommy was moved from Milford to Renaissance, so it's especially good that Ren rehab offers sessions on the weekends. Yesterday, with his therapist, Megan, and me helping, Tommy stood four times at the parallel bars and then said, "I want to try to walk." We helped him stand and he took three steps.
The food at Ren rehab isn't as good as it was at Milford--for example, "fruit" at Milford meant fresh oranges or bananas that I could prepare for him; while "fruit" at Ren rehab is fruit cocktail. The nurse has told me, however, that I can bring food for Tommy, as long as it's pureed and low in sugar, so yesterday Amy and I brought him gazpacho and guacamole dip (but no chips, of course), and he loved it, so to these I'll add other favorites of his, such as mashed sweet potatoes with fresh lemon and freshly made spaghetti sauce to offset those ubiquitous mashed potatoes.

Sunday, August 3

Yesterday I found out the excellent news that Renaissance has therapy sessions on the weekends--one session per day for Tommy (at Milford, he had no therapy sessions during those two long days). After his physical-therapy session yesterday morning, I talked with the therapist, Pam, who said that she had gotten him to stand up at the parallel bars 20 times.
I asked Pam if she knew of a simplified cell phone that we might get for Tommy, and she suggested a model called the Jitterbug; so I will check that out. Our friend Amy came to visit Tommy in the afternoon, during which time we again built the log-cabin watchtower.
This morning, I will attend the therapy session with Tommy and then Amy and I will spend the afternoon with him.

Saturday, August 2

Over the last couple of days, Tommy has been talking more, and about more things that are going on in his life. In phone conversations with Steve and Janis, he now listens and responds to their questions for two or three minutes.
Yesterday evening after dinner, we made our way to the nursing facility's one outdoor porch, which is at the far end of the long-term nursing ward (which is quite large, with 60 "residents"). On the porch were three residents, a man and a woman in wheelchairs and one with a walker, all of them smoking. The man in the wheelchair ended up telling us his very tragic life story, with long pauses followed by, "my brain has lapses...it's very embarrassing." His body, too, was wracked, like a marionette with a half-dozen broken joints. A local boy, he'd been out joyriding with two buddies; they were 17, three months from graduation, drunk. When they hit a banked curve at 70 mph that was marked 35, the driver lost it and they went end over end. Six months later, after he woke up, he spent three months at Woodrow Wilson rehab in Staunton, Va. ("where the Nascar guys go," he added, which sent a chill up my spine). That was in 1971. He is now 54. The other two people on the porch also had been leading normal lives until car crashes changed everything forever. The woman had hit a deer. Life is so weird. Coming home from this place just the other evening, at the perilous left-hand turnoff from Rt. 113 onto the road into Dagsboro, I was stopped at the red light, and another car was stopped in the slow lane of the highway; and, to our amazement, a tractor-trailer truck barreled between us through the one unoccupied lane and then, after continuing on, weaving a little, it pulled up on the right-hand shoulder. The light was still red while all this happened. I looked at the couple in the other car and we just shook our heads. He must have dozed off. Close call. For us.
When Tommy and I got back to his wing after the porch visit, I asked him if he felt like he'd had a good day. Yes, he had, he told me. What was the high point?, I asked. "Listening to that boy down there," he said, pointing toward the residents' ward. "It really makes you think," I said. "Sure does," said Tommy.

Friday, August 1

Here's the dilemma. What do you do if you're going to spend weeks at a nursing facility, and one of you is in a wheelchair, and you're not allowed to go outside? This is the case with Tommy and me. The views out the windows are of two enclosed cobblestoned-and-flowered courtyards, but they're off limits to all but the patients who are taking part in therapy sessions; and, through the outside-facing windows, we can see busy Rt. 24--a beach road--along the front side, and trees and fields elsewhere. In other words, the views beckon...but no banana. What to do for our sanity?
Answer: you do what Tommy and I did yesterday in the hour before dinner at 5, when that hemmed-in feeling overcame us. Although Tommy had had therapy sessions during both the morning and afternoon (a very good thing), he hadn't been taken outside. So, we set off to explore every last wheelable inch of the place.
The rehab nurse told us that, in addition to the rehab wing where Tommy's room is located, there are two other wings--the long-term nursing wing and the Alzheimer's/dementia wing (which is locked--you need to be buzzed in). Yes, she assured us before we set out, you can go into the other wings; and, by the way, she added, the A/d wing has a lovely sitting porch with wicker furniture on its far side that nobody ever uses. Off we went, and by the end of the hour we had what will be our daily "route", which includes even the mildly jarring trip down the length of the A/d residence hallway to the lovely porch. Our route will definitely include ten or fifteen minutes on the underutilized porch, with its row of forest-framing windows--and, in the upper corner, its two surveillance cameras. I told Tommy that the camera cops would probably come to check us out if we necked, but Tommy--who kept looking up at the cameras--refused to test my theory. Our other favorite stop on our new route is the big dining room off the facility's main hallway, abandoned between meals, with its courtyard view, shiny white linoleum-tile floor, and dozen round tables. There, we did figure 8's among the tables, the first fun we've had since Tommy arrived here. "Hey, I've gotta learn how to maneuver this thing, ya know," I said to Tommy as I carefully (honest) rounded the tables while making screeching sounds. "That's for sure," he said. Although one of the kitchen workers, spotting us through the windowed door, came out to see what was flashing past every few seconds, she just smiled and left us alone. Ahhh.

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.