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.