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.