Saturday, November 12, 2005

Elevators - Day 1,985

1,985 Days Out From the Stroke - When my brother was four-five years old, my mom took us downtown and during the course of our shopping trip the three of us got on a crowded elevator. My brother was never a shy or coy kid and when he had a question to ask he’d belted it out and that day, in between floors, he was curious. “Momma,” he said, honestly dismayed and pointing to another person on the elevator, “Why doesn’t that lady wash her face?” My mom was mortified but the black lady laughed. It was the 1940s and this anecdote speaks volumes about the times---that kid could be almost old enough for kindergarten before seeing his very first non-white person.

My second memorable elevator ride was in the Empire State Building---memorable because it was the setting for a full-blown panic attack. Not my first, but the worst one of my life. It was in the 1950s, a time when I was in love with art deco architecture and I had been looking forward to this trip to the public observatory at the top. Unfortunately, once I got there I found out that I had no more love of heights than I did for being locked inside a “windowless box” grinding and groaning its way to the top of that beautiful building. Twenty-five years later, when Don and I were in Chicago about to get on the elevator at the Sears Tower, I could feel another major panic attack coming on so I made an excuse and refused to get in. My ancestor, Elisha Otis, founder of the Otis Elevator Company, was probably rolling over in his grave over my behavior. But Don had a different reaction. That elevator had gotten stuck between floors and it took a half hour to free him from inside. He got off it in awe of me, thinking that I was clairvoyant. I never corrected that misimpression. We were newly in love and I wasn’t about to start punching gems out of my princess crown.

The most recent unforgettable elevator ride in our lives happened on the 30th day after Don’s stroke…… so I'll continue here with my documentation of his first 101 days.

Day 26 out: The social worker gave us three names of sub-acute nursing homes that have openings where Don could go. One place was the facility he’d just been in and one of the other places I toured this morning, but it was totally acceptable. So we took a tour of the third place this afternoon and we were all impressed by the cleanliness and therapy rooms. But the roller coaster we’ve been on since Don’s stroke crashed when, at the end of the tour, the woman told us that they won’t accept Don’s Blue Cross, Blue Shield. It seems they are having some sort of dispute over their contracts so they’re sitting there with half their beds empty waiting for Blue Cross to give in. I offered to private pay the difference between what The Blues would pay and what they wanted but she was firm and it seemed to me, she was somewhat smug about the whole thing. She told us to complain to insurance company and tell them their two dollars a day dispute was keeping us out of a good facility! We were so upset that she let us go through the tour and built up our hopes then laid that bomb on us.

Day 27: Don stayed awake for a very long time today and he even sat in a chair for an hour.

Day 28: Don had another good day. His color was good, his mood was good and best of all when I drilled him with “homework” he actually said a couple of vowels and letters parrot style after I'd say them.

Day 29: Don’s mood was still good and he seemed to understand most of the stuff I threw at him today. He didn’t do quite as good on comprehension and pointing to picture symbols as he did yesterday but I added eight new pictures so maybe that was too many to add at one time.

Day 30: In keeping with the comedy of errors that Don has endured over the past month, when the ambulance-cab came to transfer Don to the nursing home, the driver didn’t get Don’s wheelchair far enough into the elevator and the door shut on his toes. The elevator car moved down several feet before the driver realized what she’d done and pushed the emergency stop button. Then it took awhile for us to get Don’s toes uncaught from the rubber door seals because the door button wouldn’t open it up between floors. Once out of the elevator, we were all shook up and the driver was so flustered that she wanted to take Don to ER before we even got out of the hospital. One of nurses who knew Don from his floor happened to walk by about then and she checked his toes out and she convinced the ambu-cab driver that it would do Don more harm than good to sit in ER. At that point, Don vomited half his lunch up. The other half came up on during the ride back to the sub-acute nursing home. Everyone there seemed to be hiding after we got him checked into his room, so I ended up cleaning him up myself. He slept the rest of the day.

Day 31: All and all today went pretty good for Don. The occupational and physical therapists were both here and got Don into a chair using a slide board. He was able to understand and help out. He also sat up at the side of the bed, balancing a little better than before. The new speech therapist has him in a class for eating at noon time and she tried him on soft-solids, but she’s going back to puréed again. She also said that since Don is stuck on the word “yes”---his only word---we’re not supposed to let him get locked in on it anymore than he is already. I have to phrase questions to him that need a “no” answer, then sharply correct him when he answers, “yes.” Like: “Are you a woman?” “Is your name Paul?” Toilet training starts tomorrow! I’m not sure I even want to know the details of how that works.

Jean Riva ©

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Friday, November 04, 2005

Halloween - 1,983 Days Out

Don is outside at the end of our sidewalk all bundled up in his Woolrich coat and wearing his Stetson cowboy hat, a canvas bag of Reese’s peanut butter cups tied to his wheelchair. He’s waiting for the ghosts, gremlins, pirates and princess’s to come begging for candy. He’s having the time of his life. Until recent years, he’d always worked nights and never got to experience this ritual of fall. Imagine that, being over fifty years old before handing out your first Halloween treats. He knows most of the kids from his ‘trolling for friends’ rides in his electric wheelchair during the summer months.

I’ve been trying to locate a garden’s doorbell that I once saw in a catalog and didn’t have the brains to order it right there and then. The part that rings has a belt clip so you could wear it and the part you press to ring would have been ideal to hook up to Don’s wheelchair. That way, I’d always be at his beck and call, as long as I didn’t get more than 500 feet away. It would come in handy for times like tonight, if Don needs his candy supply replenished or when we’re in the grocery store and his Starbuck debit card is over-drawn. It would have come in handy this morning when he was in the bathroom and he accidentally spilled his urinal on the floor. Again.

Last night I typed up all my notes from the book that I had kept in Don’s room in the first 101 days after his stroke. I asked him if he wanted to read them and he does. I’m thinking it might help him be less complacent about doing his arm and leg exercises when he sees it in black and white how hard-earned it was for him to be able to stand up and make transfers, etc. The notes don’t include improvements he’s made in speech and cognitive issues since the stroke because most of them didn’t even begin until he got into out-patient therapy, after his first 101 days.

Day 23: Hospital. The breakfast tray came up with all regular liquids. No one seems to get the thickened liquids order right! The cardiologist was in this morning and he’s going to wait a couple of days to do the jump start (cardio inversion) on Don’s heart. He’s known Don a long time and he said he’d try to pull a few strings with the social workers here and try to get Don back into the rehabilitation hospital, instead of having to go back to the sub-acute nursing home. He didn’t believe the ‘vegetable for life’ prognosis either. Don had a rough day. They did an echogram, blood work, and the physical therapist was here to do some bedside range of motion stuff. Hospital staff was in and out of his room all day and they seemed to wear Don out. One of those people was a rehabilitation specialist and he told me that Don “can’t make the grade” to go back to rehab. That was a royal let down but not a complete surprise. I asked him what exactly Don would have to be able to do to make the grade. He said: 1) He’d have to be able to follow two-step directions; 2) He’d have to be able to weight bear on one leg; and, 3) He’d have to have some place to go after rehab where he won’t be living alone. At least now I feel like we’ve got some marching orders.

Day 24: Nothing new.

Day 25: The cardio inversion worked! Don’s heart rhythm is back were it belongs but what a stressful procedure that turned out to be. First, his own cardiologist had emergency surgery so they gave us someone new. He told us it would only take ten minutes but it ended up being almost two hours. Earlier in the day they had Don hooked up the heart monitor and something was going on that caused nurses to come running in and about to call a Code Blue. This happened several times over the morning so I was anxious the procedure, afraid he’d die before they got to it. Then when they got the machine in the room that was suppose to do the inversion, it wasn’t acting predictable so they called a computer specialist in. He fiddled around and finally called an electrical maintenance man in and it was determined that a wall receptacle was causing all the trouble. They wouldn’t let me stay in the room during all this so I was eavesdropping outside the door the whole time. The next thing that happened was they had the maintenance man hold the machine’s plug in the wall while the doctor let a nurse hold the paddles used to jump start Don’s heart! “She always wanted to do it,” she had told the doctor. I’m still shocked that he actually allowed her to do it.

Jean Riva ©

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