Friday, December 31, 2021

CHAPTER 219 IMPRESSIONS OF MY LIFE: AUTOBIOGRAPHY OF A RECHERCHE POET. YEAR OD THE MASK 2021







CHAPTER 218: YEAR OF THE MASKS  2021




 







Soon after 2021 began, Stuart and I resumed our writing collaborations. We began a collection of short stores we have been calling “These Things — Two.) 


“Tahisha, I promise, I am lookin’. Jobs don’t go fallin’ off seafood trucks, y’know.” He chuckled thinking it funny, him working at the fish and shell food warehouse as a security guard and all.

 

“T’ain’t funny, Esau Yakime. That a bad neighborhood, don’t know what all happens. They don’t even let you carry no gun.”

 

He laughed again. “Don’t need no gun, babe, got my mace.” He slapped the canister hanging from his belt.

 


“Yeah, that gonna stop some gangsta with a gun.”

 

“I’m lookin’, okay. Look, I gots to go, it gettin’ late. Ain’t gonna help me get no better job I gets fired off this one.”

 

He drove down to the warehouse district near the docks. He knew she was right, right as rain. It was in a bad neighborhood, but in the year he’d been doing night duty nothing had happened and he meant it when he told her he was looking. It was tough times for an uneducated man to get a job, especially if he was Black and even more especially when they figured out he was Muslim. A lot of them acted tolerant, but he saw distrust in their eyes. He was right.  They always found some excuse. He was lucky to have what he had, lousy hours and lousy pay, but something. Tahisha wouldn’t much like it if he wasn’t bringing home some jingle.


Excerpt from a short story called Esau the Terrorist by Myself and Stuart, 2021




 

2020 saw the coming of the great Covid pandemic.



It began in January of 2020 and then hung on throughout 2021. Lois, Laurel and I all got the two Maderna Vaccination shots and the booster. By the end of the year there was talk o a fourth shot. This was the result of a new variant called omicron, which sounded like something out of science fiction, The first countries to order a fourth shot were Israel  soon followed by Germany.  For most of two years everyone was hidding behind masks. Just as people were led to believe things were easing up, people began getting sick and dying all over the world again.  

Lois couldn’t stand the masks, said she couldn’t breath with them. 


My children were made worse off by the nature of their jobs. They had to ware the masks all the time, at least Lois and I could remove them in the house.  You couldn’t recognize anyone anymore. Faces were always hidden.  Here is how I looked without the mask in mid-December 2021. 



I got bad news just before Thanksgiving. My favorite aide, Brandy, was  leaving. She wasn’t happy about the mandate to get the Covid Vaccination, but that wasn’t why she was moving on. She needed more money to meet her expenses. They do not pay healthcare help enough. Bayada was paying her $14 an hour and she was able to get a medical


warehouse job paying $19 an hour. That gave her an increase of $200 a  eek.  She had worked in warehouses before, most notably Amazon. She is an excellent worker and a very caring person, but the  Aide field just didn’t pay. I really miss her.  I went two weeks with no aide and then got temporary aides. There is a real shortage because the pay is so low. Mel, one of the temporary aide announced she was leaving Bayota. She was able to get job offers at Saint Francis Hospital and Christiana Care that paid more. December 39 will be her last day. It is ridiculous. I feel being a health care aide is  tough, but essential job.  Mel has four degrees and experience, but they still don’t offer as much as entry-level people at a fast-food joint are getting.

 Brandy did a lot for me and also my wife without even asking.


  For  instance, my son had assembled the tree and put on the lights, but when Brandy came she took it upon herself to trim it She didn’t have to do that. . She did a great job without the extras.


 Brandy also baked two pies for our Thanksgiving, a Pumpkin and an Apple.


Bad things happened just before Thanksgiving. Lois got out from her bed to her chair in the living room, but then she couldn’t get up from there. She sat in that  chair for most of three days, even unable to lift her head.


I called our Doctor Nicole Scott (Right) who treated both Lois and


myself as our primary. She came to the house. She examined Lois and recommend we call 911, which we did. 

Within minutes four paramedics came in. Four, why four? I always only got two!  They took her vitals, then placed her in a wheelchair and rolled her out to an  ambulance and whisked her away. I remember the year before when I was similarly whisked off. It was as if I feet off the face of the Earth. No one knew where I was. I  just kind of disappeared. I knew I was in Wilmington Hospital then and I knew that was where they took her now, but nothing else.


Dr. Scott saw them off and in doing so intercepted Lois’ Physical Therapist who had just pulled Up.  Nicole explained to the Therapist, Anna, and the women  left and haste been back since Lois is now in a Nursing Rehab facility.


Lois was kept in Wilmington Hospital a few days, where she  had a CT Scan and then she was sent off to Manor Healthcare on Foulk Road. 


Oddly enough where they took Lois looks much the same as where

they took me a year ago.  That was Acadia Rehabilitation on Silverside while Lois went to Manor North on Faulk Road.  Perhaps not too surprising since both homes are owned by Arcadia Corporation. Perhaps this is where Lois got the idea she was in Arcadia Collage taking a course in Music. (My Pasture speculated they may be giving her Music Therapy.)

They recently informed me on the phone that they were thinking of discharging her on December 24. As much as we want her home, and she wants to come home, this is a terrible idea. She can’t do normal things, such as walk without some one assisting her; she can’t even stand up without help. She can’t take care of her bathroom needs alone or bathe herself. In my ALS condition I can’t take care of her. They just can’t send her home yet.  I think that would be abuse.


Here are the laws for discharging a patient:

  • The resident and their authorized family member/legal representative must be notified of the pending discharge or transfer in writing at least 30 days in advance of the discharge date. This notice must also include the reason(s) for the discharge and the steps the facility has taken to resolve or address these reasons. Emergency situations are the only exception to this 30-day notice rule. According to the National Long-Term Care Ombudsman Resource Center, “Verbal notice is not an official discharge. All discharges must be in writing.”
  • The facility must prepare a summary of the resident’s mental and physical health status.
  • A comprehensive post
  • -discharge plan of care for the resident must be provided, which will assist the resident in making alternative arrangements for care and/or housing. It will also guide their care team (family caregivers, future care providers, doctors, etc.) in providing follow-up care. This written discharge plan must include the location to which the resident will be discharged (which must agree to admission) and information about required medications, therapies, services, care and durable medical equipment.
  • A resident and their representative have the right to participate in all aspects of discharge planning.
  • The nursing home is required to arrange a safe and orderly discharge of all residents along with their belongings and any personal funds.


None of these steps have been taken. There has been no written notices of any kind issued. There was a casual telephone suggestion that she might be discharged on December 24,  but that was two weeks ago and I have heard nothing since. Given the the date I am keying this chapter is Christmas Day, December 25, she will not be coming home tomorrow.



Also I can’t afford aide for her until Medicaid approves her. Here are the people who can get Medicaid, if they can get through the bureaucracy. 


 I sent in a long application to Medicaid almost two months ago.  I know they got it because their medical person called a couple weeks after I mailed it asking a ton of questions. This person said she was done  with age medical part and I would hear from the Financial Person next. This was over several weeks and we have heard nothing from this person, even though I have called and my Social Worker has tried to contact her. All we received was this woman’s voicemail, but no response back and that was a week ago.  It is Christmas week so it wouldn’t surprise me If she took off for the holidays.  I bet she is quick to collect her paycheck and the needy be damned. 


I tried calling Medicare and same thing. Leave a message and perhaps someone will get back to me in my remaining lifetime.  I guess to be fair, my healthcare workers tell me every place is behind, working with short staffs because of the Covid.


So Lois was not home for the Holidays this year. For sixty years


we had celebrated thanksgiving together. In the early years we ate alternating between my parents and Lois making the feast. When we kids came we always had  Thanksgiving at my parents and Christmas at our place, so the kids could enjoy what Santa brought. As everyone grew older, it became more complicated. My children had work schedules and that made getting  together more difficult.  We began eating at restaurants because such a big dinner was hard on my mom, especially after my grandmother passed away, and the distance of travel between us and them was also a burden. In later years, after my folks were gone, Lois



and the kids and I would go to the Buffett at the Gables  of Chadds Ford Since the pandemic hit in 2020 we couldn’t do that anymore, but we still joined together, but now in 2021, for the fist time, Lois and I were separated by fate on the holiday.  


I decided to keep our Christmas traditions going, even if we couldn’t all be together. Darryl came just before Thanksgiving and set our tree up and put on the lights. My aide, Brandy trimmed the tree and the room when she came  to tend to me. She also baked our two pies, one pumpkin and the other apple. My son has his own family, but my daughters both came on Thanksgiving day. Even though Laurel had to work that morning and Noelle had to leave for her job in the evening, they still cooked a dinner for us. Here I thought we would only have Frozen TV dinners.  We had  turkey, with gravy and mashed potatoes (frozen dinners). The girls cooked the rest, candied yams, stuffing, glazed carrots, green bean carriole, stuffed shells, cranberry sauce, and corn.  Along with the pies, Noelle made rice pudding.  It was definitely a meal to say thanks for. We were stuffed.



But with Thanksgiving came sad news. My wife had been transferred from Wilmington Hospital to Manor Healthcare and there she is staying, who knows for how long, and I haven’t been able to see her since those paramedics came. The  photo is a temporary aide


named Mel, who was here when Lois was taken by the paramedics. Mel has just informed me she is leaving Bayada for a job at S. Francis Hospital. These heath care workers are just not paid enough.

I lost my regular long time aide Brandy, just before Thanksgiving, the best aide I ever had.  She left Bayada to take a job in a Medical Warehouse because there she could get $200 a week more than in the health care business. Now I am without regular aides.


It is very difficult to get aides these days. Now only don’t they get paid enough, but Covid has thinned the ranks. I went for a couple weeks with no one and now I get temporary aides, different ones each week. 


This is Helen, who has come four times. She is nice and a hard

worker, but is from Ethiopia and I have difficulty understanding her and she doesn’t fully know American ways.

The one who has come several times has been.  Francine. I told her I would remember her name because I once had a secretary at Wilmington Trust named Francine (pictured on left — the one without a beard), but the next time this aide came I had forgotten her name. Francine was the last to give me a bath and first after Brandy left. 


Brandy had spotted a wound on the back of my right ankle during the last bath she gave me. She was required to report it.


Since then I have  had two
nurses visiting me off and on. One patched it up  and the other was a wound specialist checking on it.

 

Also calling upon me weekly are a series  of Therapist, Physical, Occupational   







and Speech.










 



Also I have been visited by a Social Worker and by Stephanie, my Bayada  Case Manager.



But none of these hang around that long. Most of the time I find myself alone.



 

Laurel lives here, but she works six days a week at the SPCA. She is only here in evenings, but sometimes she works on several nights and weekend as a cat sitter. On Tuesday evening, after work, she has bell practice. She plays bells at her church on Sunday mornings. She  also goes for nature studies at Ashland Nature Preserve on Sunday afternoons. Laurel clears our home thoroughly every Sunday evening as well as doing other things for us.

 


 

Noelle has two full time jobs, both at Veterinary Hospitals and she only gets one day off a week on which she often runs errands for Lois and me. 


 

Darryl has his own family, but he still comes here once or twice a week and does a lot of the heavy lifting.


So 2021 will coming to an end in a couple weeks.  We won’t have Lois at home this year on Christmas. They told me at Manor that she might be sent home on December 24, which makes no sense. She is only 50% better in everything they mentioned and with my ALS I can’t help some one so badly off. She cannot walk with out someone helping her. She cannot stand unless someone gets her up. She can not attend to her own bathroom needs nor bathe herself. There are other issues. My Social Worker says they could lose their license if they send a person home who can’t be properly cared for. I have not heard anything further. 


On Christmas evening the night manager at Manor called.  I thought perhaps they were going to allow her to speak to and wish us a Merry Christmas, but instead he had just called to inform me they had moved her from 207B to a new room, a private rare, 210.  There was no explanation as to why, but giving the laws, and noting Lois did not come home on December 24, I expect sh will be in Rehab until at least the end of January 2022.


 We will need medicaid to cover any aid she might need or  equipment. Medicaid is dragging their feet. We have a very poor health care system in this country.   I called my Medicare case manager with some questions, but all I got was her voice mail and she hasn’t returned my  message. Of course it is the beginning of Christmas Week so maybe everybody is away. Maybe I will hear from her after New Year’s. Not holding my breath.


Maybe we would have gotten more attention if we had been substance abusers, been boozers or druggies?


 

I think we have a squirrel in the attic, so I was about to call an exterminator. The thing kept scratching and driving us squirrelly.


But I haven’t heard it the last two days. Maybe it found it’s way out.  Or died. I hope it escaped.


Just about all the Christmas  Gifts actually made it before Christmas. My temporary aides wrapped them and Aide Francine mailed my Christmas Cards. I hope the cards get to the person addressed. I can no longer write clearly. I put  short note In each card that I cannot write and Lois was in Rehab.


The girls came for Christmas. Although each worked part of the day. Animals don’t take holidays and must still be fed and cared for and both  my daughters work with animals.  Laurel and I decided we would order n Chinese food from Wing Wah for Christmas. We’ll take a page from “The Christmas Story”. I expect no duck with the head still attached however.   


December 30, almost the past day 0f 2021 did not go well. Besides being dreary and rainy things seemed jinxed.  I called Noelle and dent her out to make a couple deposits for. The one at M & T Bank was no problem, but where I really needed to get money in my account was at Citizens. My balance is getting low. My Social Security Check is scheduled for January 3, Monday. That will actually be the official New Year’s holiday. Maybe I will get the heck early because of this and it will come tomorrow, the last Friday of the year, but I can’t count on that. So I really wanted to  get the birthday money I had received in the bank now. 


Citizens Bank only has two offices near me, a branch on March Road in Branmar and another branch located in the Acme Market on Naaman road. Would you know there stem was down and Noelle couldn’t make a deposit. 


Then Mel, one of my temporary aides was here today. This is her last day, she has quit at Bayada. She went down and brought up my wash, which she washed yesterday. Usually my aide will bring up my finished laundry, fold it and lay it on a bench in the computer room. Mel brought a bag up and left it on a chair in the living room. When she left, I dragged it back to the computer room with great difficulty expecting to put my clothes away. I start to remove them from the bag and discovered everything was still wet.  The bag was too heavy for me to get downstairs.


My nurse was here to change the bandages on my ankles. She took the wet clothes down and out them in the drier. I’ll have to ask my daughter to check them whence gets home.  I was very disappointed. This was not how an aide was supposed to do things.  Frankly I am glad she won’t be back.


On Monday I am supposed to get a new temporary aide. I know nothing about this one. I need a regular aide.


Now it will be a quiet New Year’s Eve 2022. Probably next year will bring a new variant of Coved. The would seems to be falling apart. Hmm, has anyone read Revelation 6 through 16 lately?

 

Well, Merry Christmas 2021 and Happy New Year 2022 and whatever comes. After that we will see if I have another chapter or two of life to tell.


Friday, December 24, 2021

CHAPTER 218 IMPRESSIONS OF MY LIFE: AUTOBIOGRAPHY OF A RECHERCHE POET. COMING HOME 2020

 CHAPTER 218: COMIN HOME   2020



The lady who drove me home in the Gem Mobile Van, took me up the four steps from the doorway into our living area and  put me in my lift chair. She brought my wheelchair in and my luggage.


I did not expect the chaotic messI found. The living room was littered with stuff and I had clean things up before I could maneuver around. This was not at all like Lois. It was strange and should probably have warned me things weren’t quite right with her.


I discovered neither  computer was working, but Lois didn’t know what happened to them. She is not really computer savvy any more.  I spend much of my time home getting my files and programs back as they should be. Then I noticed all my ID cards had disappeared, and none of us knew why. I had kept these cards in my wallet and hadn’t taken the wallet to the hospital or rehab with me. I don’t know how they escaped my wallet, but they did and I spend several weeks getting a replacement Medicare card, supplemental insurance card, a new driver license and all the other papers that proved I existed. We managed to do this.


I also acquired an aide from an agency called Bayada, who came in three mornings week from 9:00 AM until 1:00 PM.  Her name was Evelyn Boone. (She was the only health helper whose picture I failed to take.) She took good care of me though. 


I was
reduced to wearing pull-up, which Medicaid does supply to me monthly for free. 
during my rehab stay. In the beginning the attendants there would put me in diapers ever time they changed me, like a I was a giant baby. On one time an aide put a pull up on me (I’m a big boy now.) From then on I insisted on these. They were much more comfortable than the adult diapers and I could now change myself. Eventually after I got home I only put these on when I went to bed, just  in case of an overnight accident. I could get to the bathroom quickly enough during my waking hours (usually) so didn’t feel the need to always wear them.



Not long after I got home we had dishwasher problems and ordered a new dishwasher. 


Getting the dishwasher itself was only part of the problem. Getting it delivered and installed was the bigger issued. I purchased it online (which is how I pretty much have to purchase everything now) from Home Depot. What a mistake that was.  


I figure Home Depot, with all their storefronts, was a
reputable business. Apparently not.  I paid to have the new dishwasher  delivered, installed and my old dishwasher taken away.  Seems simple enough for such a large retailer to handle. I paid for everything on June 6. They said delivery would be in two weeks.


 It did not come. They said they were waiting for shipment to their warehouse from the manufacture, which was a German company and it would be another week.  Another week and it did not come.  They kept postponing delivery.



Finally the delivery truck crew contacted me. He claimed their delivery truck had broken down (Home Depot only has one truck apparently? Why didn’t they rent one of those vans they palm off on  customers at $29 a day? They have these sitting right in their parking lot.)


They promised delivery (supposedly in my lifetime)
Probably be in two weeks once their lone truck was repaired. Apparently this giant company with but one delivery truck also only delivers on certain days as well.  (I probably should have dealt with Lowes )Three weeks passed. I called again. Promises, promises. Finally the truck driver called again. They were on their way.


A truck pulled up out front with two men in it. The small guy carries in the dishwasher on his shoulder. the big guy carried a clipboard. Division of labor by size, I guess. But wonder of


wonders, it is the correct machine. Age crate was set down in the middle o my kitchen so they could take out the old dishwasher. They set about installation. Sure. These jug-heads could not figure out where the power  cord was.  Come on. This was the fourth dishwasher we have gotten since living here. That meant four installations. No other installer didn’t  know where the power cable was.  Just Curly and Moe. They should have had the third stooge along. They looked in the nearby cabinets. They glanced under the nearby cabinets. They went outside ( like women going to the restroom in pairs) and poked about the circuit breaker box. They could not figure it out. At least they didn’t electrocute each other. They finally gathered before me and

declared  they could not do the installation or disconnect the old dishwasher because the couldn’t locate the power cord, then they packed up and left my new machine sitting unwrapped in the middle of the kitchen. They did not disconnect the old one, let alone haul it away, nor did they install the new one. As they drove off out of sight, the driver told me I would be reinvested for the fees I paid for these services.


I had to hire a plumber to come and install my dishwasher
and  dispose of the old one. He came promptly. He didn’t have any problem whatsoever finding the electoral connections. He was very diligent, very friendly and did the job. He warned us ahead of time thet  people were usually surprised it cost as much to install a dishwasher as it did to buy the marine, and it did, but Lois and I were happy because it got ‘er done, including hung away the old machine. I would hire Lem the Plumber in a flash in the future.



And the Bosch dishwasher works great. 


After coming out of the Rehab, named Evelyn   Boone proved an excellent aide. Evelyn was with me thought out the end of 2020 right into Spring of 2021, then she began not feeling well. She developed this itch that would not go away. Then one morning my health care people, Bayada, called to say she was in the hospital and would not be coming back. It wasn’t Covid. After working for us nearly a year, she developed an allergy to cats. That doesn’t work in our place. At that time we had 5 cats.



It’s difficult to find aides now that we have this pandemic. I had some temp aides, but most of my time I did without, then they send me  Brandy Dill. She was perfect. She was a hard worker and her and I hit it off immediately. 


She wouldn’t let me snap her photo without her mask, but


she looked a lot like this actress, but this actress was blond and had teeth. 


What, you say? Brandy had no teeth, That is true. This is the cost of  one time being a drug addict.  She was into crack cocaine as a young woman. (I think
of the man who was in the hospital with me who broke up and swallowed his crack pipe.) Not only did she lose her teeth, she lost one of her sons, who the state took from her. She is currently in court battling to regain custody. The man she was with then died. She has his name tattooed on her left arm. She has several tattoos, some she did herself after learning that trade. This was an skill she learned. She escaped that druggie life through a belief in Jesus Christ. My oldest daughter is actually one year older than Brandy, but she never did drugs and she has all her teeth.  Brandy is currently being fitted for new teeth.


You need it feel comfortable with your aide when you are as


  powerless as I have become. I can’t even bathe myself anymore. I had a shower chair, but had recently gotten a shower bench on the recommendations of those who look after me.  I must be helped down upon that bench slip to the middle and then bathed, like an elephant being hosed down at the zoo. After she helps me out and dries me off, she runs a special moisturizer all over me One must get over  any shyness and it helps if you can feel secure with your aide.



The bench is placed in the tub. Two legs go outside the tub on the bathroom floor and the other two legs, with the wider suction cup feet, go into the tub. You can adjust the legs so he bench is level. A person sits on the outer Lip, then swings the legs inside the tub ad slides down the seat to the back  rest. Then the aide
can use the hanging shower head to run water over the body and such. Once washed and rinsed the procedure is reversed. I slide up to the end and the aide lifts my legs over one at a time. 


(My shower bench broke in 2021. And can’t be repaired. I have had to order a new one.  It cost $55 on Amazon.)


One thing that happened after I was home we old geezer buddies could meet on Zoom weekly. It the photo there is Ronald Tipton on the top left and then me holding a camera. On the bottom right is Stuart Meisel. Ron,  Stuart and I met and became friends in third grade when we were ten years old. The fourth of the quartet is Pat Flynn, whom Ronald became friends
with a few years ago. He is a Canadian and the baby of the group, being in his early seventies. 


Wednesday, December 15, 2021

CHAPTER 217 IMPRESSIONS OF MY LIFE: AUTOBIOGRAPHY OF A RECHERCHE POET. FORTY DAYS IN THE WLDERNESS 2020

 CHAPTER 217: FORTY DAYS IN THE WILDERNESS  2020


 


 


I couldn’t believe I had a stroke. Everything seemed to be working just like before. I could talk plainly and nothing seemed impaired. I didn’t really believe them. I have since been told most people don’t remember having a stroke.



Anyway, I was sent off to rehab at Arcdia Silverside Road,
considered  to be in part of North Wilmington, although I don’t consider the area Wilmington at all. This would be my home for most of the summer. The day was July 5, 2020

Again an ambulance ride and paramedic pushing me and a gurney  through hallways I really couldn’t see. All I saw were the overhead lights. 


Then I was lifted off the gurney and placed me upon a bed, from which I was told not to try to get out of.  Not quite as intimidating as Christiana when I  had C. Diff. thought, no alarms this time.  I didn’t feel strong enough to climb out of bed anyway so they didn’t have to worry yet. 




It was a large room with two beds, but I was the only patient. I had the bed next to the window. 

“Well, isn’t this luxurious,” I thought. But I found out I was alone because all new patients were in quarantine due of Covid. It was also a Sunday, so only a Skelton staff was on duty. There were no Therapists at all, they are never here on weekends..  It was nice while it lasted. However, I couldn’t walk; I couldn’t even stand. I was stuck lying in bed trying my best to figure out how the TV hanging above my head worked..  

My 79th Birthday was on June 27. I had been kept at Wilmington  Hospital about six days. Hospitals get tired of patients hanging around. We get stale and they ship our carcusses elsewhere, dead or  alive. I was still alive so the Hospital Social Worker showed up with a menu of nursing homes and asked where I wished to go. What did I know about Delaware nursing homes?

   Zilch. 



I looked the list over and Arcdia on Silverside Road seemed the closest to my home, so I picked it.


On Monday, about 9:00 AM a women in a mask appear by my
bed.  She hadn’t come to rob me but came to teach me how to transport from the bed to a wheelchair. ( She didn’t look like the one in this photo. She was a good-looking, slim, young and tall person, almost my height, and very friendly.)She would be my physical therapist during my stay. By the time she left me that  morning I was able to slide to the edge of the bed and swing my bottom over in a chair. After she got me doing that, she had me running the chair back and forth in the room, at the end of which I was actually able to get myself back into bed.

She was there to catch me if I didn’t quite make it. First thing she had done was put a big belt about me that she could hold me up if necessary. 


Wheelchairs can be tricky getting into and out of.  Remember, the very first rule of wheelchair transitions, make sure the blasted thing is locked!

 



Trying to sit or get up from an
unlocked wheelchair is a disaster ready to happen. The chair will tun away from you and you will not sit in its cushy cushion but on the hard unforgiving floor, while the chair sails gleefully across the room away from you. This was a lesson I learned the hard way more than once.



I am a risk taker, I know. Once the therapist showed me I could transfer from bed to wheelchair, I had to try it out for myself, even though I was told not to do this unless someone was with. I had to see if I could wheel  around the room on my own, and I saw I could. I also felt now I could go to the bathroom on my own.


I wheeled into the bathroom and approached  the toilet. I 
wheeled near it, but it was like that park bench. I could get up near the seat, but I couldn’t; sit down. I circled around a bit and then lost my balance.  I tried to grab the wheelchair seat to balance myself, but instead the chair went over backward and took me with it. I crashed on the tile floor helpless. 


I slowly dragged myself across the floor toward the HELP rope rear hug down from the far wall and as I did this all inside me let loose. It was like C. Diff. all over and what was coming out was all over. All over the floor, all over my legs, all over my shorts, but none in the toilet.  I reached the pull cord and pulled it. 

I lay back exhausted gazing at the mess I made.  A floor aide walked in. She kind of gasped. She called in another lady. The two of them cleaned me up and got me back in the uprighted chair.  They got a mop and pail and scrubbed the floor. The shorts I had on disappeared and I would never see them again.

The first worker wheeled me back to my bed and got me
tucked in.  She wasn’t happy with me at all. “You are not to get our of that bed  without help.” She said. If you need to get up or anything, call us. That is what we are here for.  Understand?”

“Yes,” I nodded my noggin. “I understand.” 


And I did. I did not  make any more unaided transfers or scoot about on my own.

 

On Monday my rehabilitation began in Ernest.  I awoke Monday morning to find the tall, rather good looking young woman standing next to my bed. She would be one of my Physical Therapists during my stay. She would be followed by an Occupational Therapist and a Speech Pathologist. They came in one after another like Scrooge’s Spirits and they came everyday I was there, except weekends. Therapists did not do therapy on the weekends. (There would be many Therapists in my future.)


The Occupational Therapist was not there to teach me a new  occupation. She was here to show me how to the mundane tasks of life, which had now become difficult. How instance how to cook a simple meal. As a  Medicaid Member I would be receiving Mom’s Meals.  These are precooked packets, similar to dozen dinners, breakfast, lunch and dinner. Actually they are not at all bad. 

Since the center’s simulated kitchen was in use my OT too me out to the patient lounge, which had a refrigerator and microwave. We didn’t really use the microwave. We play acted that I was cooking my meal. Pretend you have a meal. Put it in for two minutes. Take it out pretend to peel back the clear
plastic seal, put back fro another minute, take out and discard the seal and eat.  One day I pretended to cook a toy tractor.  


We went to the bathroom and simulated getting a shower. I was shown how to carry my walker up steps in the gym. It is not as easy as you think



When you are in one of these kind of places there are two things you look forward to: the visits from your Therapists five days a week and meal times every day. Surprisingly, the meal  were very good.


My meals were brought to my bed because of my mobile


problems. I had breakfast, lunch and dinner in bed. Meals were served pretty much at the same time daily, but you could hear them coming by the heavy rolling of the cart. Now aide are supposed to prep the meals; that is, cut the meat, peel off any lids or seals and start tearing packs, such as ketchup. Some aides remembered to do this, some didn’t. It was bad for me if I got someone who didn’t do this. With my ALS I couldn’t open things or cut food. Things might say so easy  a child can do it, but this not true when you have Lou Gehrig Disease.

Now I was fairly content alone in my room, but after 14 days


two young ladies in scrubs showed up and said I was being moved. My quarantine was over. They were packing up my  things and transferring me to a wheelchair. No more private room. I was getting a roommate. 


The man was curled up on the top bed nearest the hallway door. He was an old black man. Those hauling me in introduced him and I said hello but he said nothing back to me. When I was alone in quarantine, I could hear a number of patients gathered in a hall somewhere. They seemed to  have a little nightly get-together outside of their rooms. One thing I noticed was a get ten screaming. I thought I’m glad I’m not near him. He was aways screeching about something, But this occurred in the distance, up a hallway far away from me. When I was moved, guess who my roommate was? This howling man!

The “Howling Man” hd been one of the more famous of the Twilight Zone episodes. It was written by a favorite writer of my youth, Charles  Beaumont. The Howling Man was not someone you’d want to be locked up since His howling could break out at anytime, day or night. We patients had a call button for
summoning a nurse. (I was always calling it the Cow Bell.)  He never used the bell.  He wanted anything he just screamed for it, over and over until he got attention   Most of the time his bell was on the floor under his bed.

In late evenings he would begin to chant. He would turn his TV loud after lights out. Many time he would be talking to people not there, One morning he was instructing some imaginary person on preparing a boat for sailing. My Therapist would come in to treat me and wonder how I stood  it. These therapists took pity on and went to management on my behalf.



The next day two young women in scrubs came in. 

“Good morning, Mr. Meredith”, they said. “You’re being moved.”

Unfortunately they dropped my


glasses transferring me to my new bed, so I had no glasses  the rest of my stay. 

As they whelled me to my new home they told me not to worry, my new roommate was quiet.  Indeed he was.


He was a man about the
same age as myself. He introduced himself as Frank. This made it easy for me to remember. My high school nickname had been Frank.  His name was Francis Castelli and he had been assistant superintendent of the Brandywine School District when he retired. (My maternal grandfather’s name was Francis and so was my paternal uncle.) 

Dr. Castelli, he had a P.hD in Behavioral Science. He also had a B. A, in Biology and a Master’s in Education. He was once the state’s teacher of the year in Biology. He was quiet and he and I got along famously. We could talk intelligently to each other and had  many conversations.

He had his peccadilloes. One of his particularities, was
when the food was delivered and no  one was looking, he would wheel out to the little condiment cart and take several packets of salad dressing. These he would bring back to his bed and drink the contents.


This was my routine.


I woke up always very early. I tried to be quite so as not to disturb my roommate. It was not possible to go for a walk in a park as had been my pre-ALS habit so I would turn on the TV and watch with the sound off, using the closed caption. Once I though it was safe to masker s little noice I would transfer to my wheelchair and roll into the bathroom. I could brush my teeth and such. 


I did not resist being taught. I figured the fastest way out of
the place was to do what the therapists told me to do. I was also glad when I could transfer out of bed to my wheelchair safely and able to urinate in the bathroom toilet  normally and not in a bottle. The aides were suppose to empty these urine bottles anytime they passed through your area, but some of them failed do so. When the urine bottle got two-thirds full in was almost impossible to use. You haven’t experienced life until you’ve poured cold urine across your groin.  Not pleasant.

I was so excited the first time I rolled into the restroom alone needing to urinate. It had grab bars along both walls in the corner where the toilet was. I pulled myself up and inch along these bars until I stradded the toilet, then eased my  - uh -equipment out and stood going like a man should. I  was overjoyed to have accomplished this as I inched back along the bar to where my wheelchair waited. I lowered myself down to sit and realized too late I had overlooked rule one of wheelchair use. Always lock the brakes. I sat and as soon as my thighs hit the wheelchair cushion it zoomed across the room without me and I landed on my bottom upon the floor. I had to call for help to get me up.



I watched a lot of films on Turner Classic Movies and
American  Classic Films. I watched a lot of old films I had never before seen, including almost all of Charlie Chaplin’s. I had never watched these because I didn’t see what the fuss about Chaplin was. Now I do. Other than watching films not much else was available. There were no activities being held because of Covid. People could not gather.  

The highlights of the day, besides meals, were the visits of the Therapists, but they only came during the week. There was no therapy on Saturday or Sunday, and there was only a 

Skelton crew at the center. Families couldn’t visit, no one could because of the pandemic. We did have some things, such as Christmas in July where some staff member dressed as Santa came to each room and headed out little gifts.  There were cupcakes and staff sang carols.

I talked on the phone to my wife every morning and also my friend Ronald.


Frank and I talked a lot.


I would spend 40 days in rehab. I went into it in late June and came home on August 13.



 Frank and I had both been admitted to Acadia Healthcare about the same time, but I was discharged before him. He wanted to be discharged so badly, but he struggled with what he had to do. He resisted much of the treatment and was threatened with being moved
into long term care. He would complain about the therapists, especially physical therapy, who often took him to the gym to work out on the bars. This was to help him regain his ability to walk, but he grumbled it always made him mess himself.  

He was admitted because he had a urinary track infection. This had totally messed him up. He couldn’t walk. He needed aide to transfer from wheelchair to bed and vice versa. He had to be helped to dress and even to go to the bathroom.



After I left I wondered if he ever got out of the place. I have discovered he died in 2020 at the age of 80 one month after I was discharged.


I was driven home in a GEM Mobile Van. They strapped my
wheelchair, a new chair I was allowed to keep, in the back of the van. All I could   think about were the many comedies I had seen where the patient comes loose, goes out the ambulance rear doors and rolls down a street against traffic.