Tuesday, January 27, 2015

Notes from the Home - January 27, 2015

     A week ago, I told Dr. Verson, the neurologist, I was feeling depressed. Instead upping the dosage of Bupropion, which I have been taking for five or six years, he gave me a prescription for Lexapro. He instructed me to take one Lexapro (10 mg) each day for a week, then take two Lexapro a day and continue using the Baclofin. The results have been depressing. Damn depressing.
     To be fair, the Lexapro worked exceptionally well as a laxative. Ten minutes after downing the first Lexapro, my bowels emptied and clogged the commode. Things went to pot after that. My mood was good, but my legs got more and more obstinate as the day went on. Undeterred, I took another Lexapro the next day (Sunday). My mood improved a little, but not enough to offset the stiffness and discomfort the Lexapro seemed to be inflicting on my legs. 
     "That's it," I said. "I'm not taking any more." I stuck to my guns Monday and Tuesday. As luck would have it, I had an appointment with Dr. Miller, the primary care doc, Tuesday, and told him about the Lexapro. "I'm surprised," he said. "Only two days? Most people go at least a week or two before the bail." Well, if others can go a week or two before bailing, so can I.
     Wednesday morning, I took one Lexapro from the bottle and downed it along with the other meds. Fifteen minutes later, I was seated on the throne, where my bowels emptied in short order. "Damn, I like this stuff," I said. That afternoon I changed my mind. My stomach was upset, I was getting stiffer and stiffer and getting clumsier than ever.
    That night, as I tried to get into bed, I fell. Wedged between the wheelchair and the chest of drawers, I struggled to reach my cell phone, which was on the nightstand. In time, I succeeded in knocking the phone off the stand. It didn't land out of reach, not quite. Alas, when I got my fingers on the thing, I couldn't grip it and somehow managed to push the phone under the chest of drawers.
     With the phone now most definitely out of reach, my sole option was to yell, "Help!" I yelled only now and then, certain my neighbors - hard-of-hearing all - would not hear me, and my best chance was to save my voice until I heard someone in the hall. Wrong again. Mildred, who lives across the hall, thought she heard someone yelling a couple times. She wasn't sure, though, because I didn't follow through with a series of screams. A retired nurse, Mildred did stay on the alert and eventually concluded the yelling was coming from my apartment.
     She called the desk, and Warren, the night man, came down. He must have used every passkey in the place before he found one that would open my door. Then he looked at me, all contorted as a result of trying to wiggle free. "I'm going to need some help," he said. In response to his call, a nurse's assistant from Personal Care helped him get me up on the bed. They took off my shoes and pants, asked if I needed anything, made sure I was comfortable, put my phone on the nightstand and said to call if I had any more difficulty.
     The additional difficulty came at five Thursday morning as I tried to get up. The wheelchair had been parked too close to the bed, and I couldn't swing my legs around to get myself seated on the edge of the bed. I called. Warren came down, moved the wheelchair and helped me get dressed. At the time, I thought helping me dress was unnecessary. Considering the difficulty I had dressing myself Friday and Saturday, however, had Warren left after moving the wheelchair, I would have had to call him back to help me dress.
      Thursday night I repeated my ineptitude as I tried to get in bed. The phone, however, was in my shirt pocket. Aliesha and Annie answered my SOS. They had no trouble getting me off the floor and on to the bed. And I got a hug from each of them.
     I've been able to get into bed without embarrassing myself every night since. Getting a sock and shoe on the left foot is still more work than it was in pre-Lexapro days, but it is getting easier.

     Janet, who moved into one of the duplexes a week or two before Christmas, is originally from England. This morning - a cold, windy, raw, overcast morning - she was smoking outside as I went by her place. She hurried down the driveway to ask why I didn't have a blanket for my legs. I told her I have one, but I seldom use it. She offered to get a blanket for me; a small one that wouldn't get in the way.
     "No thank you," I said.
     "It's cold. Aren't you cold?" she asked.
     "A little,but it's not that bad."
     "Well, I'm bloomin' freezing," she said, sounding like Eliza Doolittle before 'enry 'iggans got a hold of her.

     Penelope's current project is to put together a collection of 100-word love stories written by the residents. Molly, who will soon be ninety-one, wrote several pages about how her then future husband courted her. Penelope asked me to cut it down to one hundred words.
     Molly wrote that while her then boyfriend was in the Army, stationed in Louisiana, he asked her to come visit him for a weekend. He had reserved a room for Mr. and Mrs. Smith. "We had a very sexy weekend," she wrote.
      When I got through playing Mr. Reader's Digest, I showed the story to Penelope and told her I'd changed "sexy weekend" to "romantic weekend."
     "I guess our parents' generation had sex before marriage, too," Penelope, who is in her early sixties, said.
     "I imagine they did."
     "But they said they never did and told us we shouldn't have sex before marriage," she said. She  thought for a moment and added, "Maybe that was one of those things covered under 'Do as I say, not as I do.'"

Saturday, January 17, 2015

Notes from the Home - January 17, 2015

     Russ had a busy week, running me to and from the Columbus Clinic. Tuesday morning, he took me to see the phlebotomy folks, who needled me in preparation for next week's physical with Dr. Miller, a primary care doc. The phlebotomist was intimate with my right arm for two or three minutes. The wait for those few magical moments was nearly an hour. It must have been National Have a Phlebotomist Stick a Needle in Your Arm Day.
     Friday was my day to see Dr. Verson, a neurologist. Thursday afternoon, as I sat grousing about having to go back to the Clinic Friday, the phone rang. It was Dr. Miller's nurse. "The results of Tuesday's blood work indicate that you are slightly anemic, and Dr. Miller would like to have a couple more tests run before you come in Tuesday," she said. "I see you have an eleven-o'clock tomorrow with Dr. Verson. We can set you up for the blood work at nine-thirty. Would that be all right?" "That will be great," I said without conviction.
      In truth, though, I was relieved to hear anemia is at least part of the reason I've been in too pooped to pop lately. Some of the tiredness is the result of having to work longer and harder to do the simplest things. In the mornings, getting dressed - putting on socks, a pair of pants, a shirt and my shoes - takes seventeen or eighteen minutes, and that is on a good day. A recent article on WebMD said that tiredness and lack of energy are simply facts of life for someone with MS. Be that as it may, I can't help but feel there is more life in me than I've been able to tap lately. Maybe not, but it is worth hoping for.
     During my visit with Dr. Verson, he asked how the Bupropion is working. "I don't know." I told him. "I thought I was getting depressed, but Dr. Miller says I'm anemic. Maybe I'm just tired." "Maybe," the good doctor said, "but maybe we should give Lexapro a try," Why not. So, for the next six weeks, in addition to the Bupropion I already take, I'll take 20 mg of Lexapro to see if I can tolerate it and if it works for me. If I can, and if it does, Lexapro will become my happy pill of choice.
     None of the above has anything to do with the bad taste the two visits to the Columbus Clinic left in my mouth. The nasty aftertaste was put there by the medical personnel who, when asking a question, directed it to Russ and ignored me. "Can he do this?" one asked Russ as she handed him a clipboard with a form to be filled out on it. "I don't know, ask him." All right, Russ!!!!
     There are a whole passel of Columbus Clinic employees, and a few Covenant Woods' employees, too, who would benefit from some of the in-service programs put on by the Ashtabula County Board of Mental Retardation and Developmental Disabilities. Then perhaps they'd know, you don't look passed, you don't ignore a person because she looks "retarded," or he is being pushed around in a wheelchair.   
     I don't know for certain, but I do believe I am the only resident on this section of the first floor whose hearing is in the normal range. To make themselves heard, folks around here speak in loud voices. There are times - Monday afternoon, for example - when the people conversing in the hallway might as well be in my apartment.
     As I was preening for dinner, Mildred, who lives across the hall, and Leila, who lives next door, were talking in the hall. Being able to hear folks in the hall while I am using the bathroom is not a good thing. Even when all is quiet, the old urinary tract lollygags once I get in position to deal with the urgent signals it has been sending me. And when there are voices in the hallway, especially female voices, it gets all modest and shuts down until the hallway yakkers shut up. Monday afternoon, however. I was in the hair-combing, teeth-brushing phase when Mildred and Leila had their short conversation.
      When I finished the grooming chores, I went to the dining room. Leila was already there, sitting with Ethel and Anna. The fourth seat at the table was empty, which was a matter of concern for them. Ethel asked if I had seen Mildred. No, I hadn't seen her, but I had done some inadvertent eavesdropping.
     "A few minutes ago, I heard Mildred remind Leila that it was time for her to go to dinner," I said. "And Mildred said she was going out to eat with her son."
     "Oh, yeah, she did say that," Leila said.
     Not only can this guy hear, he sometimes remembers what he heard.

     Al called Monday morning and asked me to come up to his apartment.
     "I went to bed about nine o'clock last night," he told me when I got there. "Three or four times I felt a lot of pressure and thought I was going to have a movement. I'd go in there, sit down and there would be this big explosion, but it was nothing but gas.
     "Then, about a half hour ago, I did have a movement. A big one. It was all black - really black. I left it in there so when hospice gets here they can see it. You want to see it?"
     I declined. I did, however, stick around to listen to tales of excretory woe.The saga went on for twenty minutes until, soon after I politely passed up yet another opportunity to peer into Al's commode, a woman from hospice arrived. She said a nurse named Lou and another woman from hospice would arrive shortly. Realizing I'd be in the way, I took my leave.
     Al didn't sound well when I called him that afternoon, but he did ask that I tell the food service people to send dinner up to him. This was a change. For the last two weeks or more, Al had been saying, "I'm not going to dinner tonight. I've got a can of salmon and some beans up here." And that is what he'd been eating.The dinner from the Covenant Woods' kitchen seemed to help.
     "I was going to go out on the porch and smoke me a cigar," he told me when I called that evening. "But when I opened the door, the wind was right in my face and almost blew me over. I think I'll just pour me a glass of wine."
     When we talked Friday, he told me, "I had a movement this morning - thirteen inches and solid. It felt good. I wish I could have one of those every day."

Friday, January 16, 2015

Awake at Two in the Morning

At two  in the morning, I lie awake in the quiet of the night.
A police car, siren blaring, whizzes by. Silence returns.
Thoughts tumble endlessly in my mind, some happy, others not quite.

The kids' faces on a long-ago Christmas morning, pure delight.
Playing catch with them, watching a school play, times for which my heart yearns.
At two in the morning, I lie awake in the quiet of the night.

I realize the fridge was running when it shuts off. A moth in flight
Flitters about the room. The croaking peepers can't hush my concerns.
Thoughts tumble endlessly in my mind, some happy, others not quite.

Things I should have done; things I should not have done that now can't be put right
Haunt me in the wee hours. I made mistakes and I took wrong turns.
At two in the morning, I lie awake in the quiet of the night.

My kids, my grandchildren, my friends make the world bright.
Damn MS; this spastic body; how will I cope? The question burns.
Thoughts tumble endlessly in my mind, some happy, others not quite.

The furnace comes on. White noise subdues the uproar, the mental blight,
And the meeting between my high hopes and low expectations adjourns.
At two in the morning, I lie awake in the quiet of the night,
Thoughts tumble endlessly in my mind, some happy, others not quite.

Sunday, January 11, 2015

Notes from the Home - January 11, 2015

      Al, concerned about the state of his bowels, saw his doctor Tuesday, and the doctor said, "I'll call in a prescription." Wednesday morning, Daniel, who works for Hospice Advantage, stopped at CVS to pick up the prescription that consisted of a couple inches of white powder at the bottom of a one-gallon plastic jug. Daniel read the instructions, filled the jug with water, shook well, and told Al he was to drink one eight-ounce glass of the stuff every ten minutes until he had a clear bowel movement.
    Al stayed in his apartment on Thursday but was out and about Friday. He came down the stairs as I was on my way to check the mail. It was quarter-past eleven, and the hallway was filled with people heading to lunch. Along the way, several folks asked Al how he was doing. The squeamish, no doubt, regretted it.
     "The doctor gave me a prescription," he'd say. "I had to drink a glass full every few minutes. After three or four glasses, I had a movement. It was black, the blackest movement I've ever had. Then I drank another glass or two and had another movement. It was black, too.
     "So I had to keep drinking that shit. Eventually, I had a couple movements that were black and brown. Then I had a couple brown movements. Then I was shitting water with just a few brown flakes in it. You'd think I'd be all cleaned out by now, but I still have pressure here [rubbing his gut]. I tried to have a movement this morning, but all I did was pass some gas. Those doctors don't know shit."
     By the time Al had gotten his mail and was about to climb the stairs up to the second floor - he doesn't use the elevator unless he is toting a bulky package of some sort - he'd told the story of his movements ten times or more.
     I went to check on Al Saturday morning. "About five o'clock this morning, I finally had a good movement. I'd sit on the toilet every couple hours trying to shit. Then it happened. It was brown, about eight or ten inches long and round, about this big," he said, making a circle with his thumb and index finger. "It looked like shit is supposed to look."
     With that out of the way, Al turned his attention to getting a fair settlement from an apartment-rental group he has been associated with for many years. It is a long, convoluted tale. From what I gather, Al wants his money before he dies or becomes too addled to know what he is doing. The folks in Savannah offered him $25,000, Al figures his share is closer to $100,000, but he says he'd be happy with $60,000.
     Friday night, while waiting for his bowels to work, Al went through some of his records and Saturday he asked me to make some copies of them. "I'm sending this stuff to my lawyer," he said. "This proves that bastard in Savannah is trying to cheat me."
     I'm not sure the stuff proves that, but anything that get Al's mind out of his bowels is a good thing.

     Janet moved into one of the Covenant Woods' duplexes in early December. She is a little pudgy and looks to be in her early seventies. She is obviously English. When she speaks, it's easy to imagine being in a pub and Janet taking your order for a pint of bitters and a steak-and-kidney pie.
     Despite the bright sunshine Thursday morning, the temperature lingered around sixteen or seventeen degrees as I made my morning rounds.
     "You're an awfully brave man riding around in this cold," Janet said as I wheelchaired by her driveway.
     "No braver than you," I told her.
     "I'm not brave. I'm dumb," she said, holding up her cigarette. "If I didn't smoke, I wouldn't be out here." 
      "I love my little dog," Burt says every time the conversation turns to pets. "I don't know what I'd do without Georgette."
     Saturday morning, Georgette, a small, poodle-like dog, wasn't around when Burt got up. He enlisted the help of three or four others, and they scoured Covenant Woods inside and out for an hour. Then Burt remembered, "My daughter-in-law came by last night to get Georgette so she can take her to the groomer today. If I wasn't crazy I would have remembered that." An hour or two later, Georgette was back, shaven, shorn, and cuter than ever.

Saturday, January 3, 2015

Notes from the Home - January 3, 2015

     Al managed to get out of St. Francis Hospital on New Year's day. He called from the hospital at nine that morning to express his displeasure with the medical community in general and the hospital staff in particular. He'd been there four days, and he was ready to leave.
     "I slept on a gurney for three nights, because they didn't have a room for me," Al said. "If I had to urinate, I had to press a button. Then a nurse brought me a bottle to piss in. To piss in it, I had to get over on my side. But the god damned gurney was so damn narrow I could hardly move, let alone get on my side. I ended up pissing all over myself and all over the fucking bed.
     "And the god damned doctors don't know shit. They keep telling me they can't find anything wrong. Bullshit! Damn it, there is something wrong. That's why the hell I'm here. I think they run tests just so they can charge people for them.
     "I have to get out of here. Get a hold of Penelope right away and tell her I need to talk to her."
     And so, 2015 was barely nine-hours old when the year's first dilemma arose: Do I wait an hour or two before calling Penelope, in case she had celebrated with gusto Wednesday night, and risk the wrath of Al? Or do I risk incurring Penelope's wrath by calling her immediately? Well, William Congreve, the man credited for the line, "Hell hath no fury like a woman scorned," died three centuries ago and never met Al. I called Penelope.
     "There's nothing I can do for him," she said. "But I'll give him a call."
     Later in the day, as I was thinking about getting ready for dinner, Al called. "Tom, I'm back. Penelope just dropped me off."
     Al hasn't told me how he obtained his release, although I image more than a few medical professionals were told to "go to hell" in the process. Al is home now, but the raging storm of complaints continues unabated.
     "I don't know why the hell they didn't do a colonoscopy and find out what the blockage is," he told me Friday. "I've been trying to have a movement all day. There is a lot of pressure right here," he said rubbing the area around his belt buckle. "I sat on toilet for forty-five minutes after lunch, but nothing happened. Shit."
     On the other hand, Al has signed on with Hospice Advantage and seems reasonably pleased with it so far.
     "A lady from hospice was here a few minutes ago. She asked me a bunch of questions, and she listened to what I had to say," Al told me. "She told me, if I need anything all I have to do is call them. They're going to pick up a prescription for me tomorrow.
     "And she helped me get a bath. There I was, butt-naked, and she helped me get in the tub. She helped me clean myself. She has nice fingers."
    Last week, Annie drove Al to Publix. During that journey of less than a quarter mile, Al criticized Annie for obeying the stop sign at end of Covenant Woods' drive - "What are you stopping for. There's no one coming" - for ignoring the first entrance to the Publix parking lot and using the one a hundred yards beyond it - "Why didn't you go in back there. This is the wrong one" - and for parking in the "wrong" place, even though Annie let him out at the door to the supermarket and picked him up there when he came out. Annie and Al made another trip to Publix Friday, and Annie reports that Al didn't complain at all, never, not once. 
     I dropped in on Al Saturday evening. He cast more aspersions on doctors, nurses and just about everyone else in the health care biz. He also bemoaned his life without a car - a day or two before Christmas, Al gave his car to a friend in Savannah. Among other things, he wouldn't be able to go to the store and pick up strawberries, blueberries and tomatoes until at least Monday. Well, I had all those things, and I went down to my apartment and went back up to Al's with the three things he said he wanted along with a few bananas, some apples and a couple oranges.
     "But now you don't have any of this stuff," he said.
     "So? I'm going over see Russ and Karen tomorrow. On the way back, I'll ask Russ to stop at Publix and I'll replace it all."
     With that, Al reached in his pants pocket, pulled out two fifties and handed them to me. "Here, give this to Russ and Karen for all the help they give you."
     That's the kind of guy Al is.

     Isabelle is in hospice, and Al has been in the hospital or eating in his room, so it has been just Burt and me at table A-2 at dinner. That ended Friday, when Leon joined us. Leon is a recent arrival at Covenant Woods. He is loud enough that I had heard him from several tables away on a couple of occasions. I was hoping he wouldn't notice the two empty seats at our table. He did.
     The first words out his mouth weren't "Hi, my name is Leon." His first words came as he stared at me while sitting down.
     "Where are you from?" he asked in his harsh, gravelly voice.
     "I grew up in the Pittsburgh area. . ."
     "What I want to know," he said, cutting me off, "are you Jewish?"
     I'm not Jewish, but I have been asked that question a million times. Hell, in my time at West Virginia Wesleyan College, people called me Jew more often than they called me Tom. But Leon's "are you Jewish?" sounded more like an accusation than a friendly inquiry.
     Before I could spit out, "Are you with the Gestapo?" Leon hastened to say, "Not that it makes any difference, but you look like a damn Jew."
     Not that it makes any difference, but Leon sounds like a damn bigot.

To Bed, Perchance to Sleep

According to an article on the National Multiple Sclerosis Society's website, a person with MS is up to three times more likely to exper...