30 People in 24 Hours

It started 10 days before.

I woke up in the middle of the night and noticed there was numbness in the muscles that  control the left corner of my lips. It was weird.  I was not sure if this was something serious or something that I could address after I got up for work later. I went into the bathroom and made sure I did not have a droopy smile and to check to make sure I had not lost any dexterity in my left hand.  There was no tingling and I was not experiencing any headaches.

Everything checked out so I decided to go back to sleep.

There is an amazing app that exists that allows me access to all my medical information in one place.  It is called MyChart.  The next morning I logged into MyChart and sent a quick message to the neurologist I have been seeing to ask if the numbness in my lips was something I need to be concerned about.

Her nurse responded to say the doctor had reviewed what happened and suggested that if it happened again that I should go to the emergency department right away.

Within a few days, I received a all from the neurologist who asked about other possible symptoms and emphasized the need to visit the emergency department should there be a reoccurrence.

It was the very next Sunday that I detected the same numbness again.  This time it was only a slight bit compared to what I had experienced in the middle of that night.

What to do. After weighing the lack of severity of the numbness this time against the advice of the neurologist and the fact that Covid 19 was surging again, I called the phone number of neurologist and asked the answering service to notify the on call nurse who called a few minutes later.

Despite concern for exposure to Covid, the decision was made to get to the emergency department.

The count began upon my arrival.

Phyllis greeted me at the entrance and conducted the pre-screening for Covid.

After making it through security, Lorraine gave me a hospital bracelet with my name, age, date of birth, MRN number, CSN number, a QR code and what looked like a UPC code. She asked me to sit in the first two sections of the waiting room.

I did as I was told and prepared myself for what I figured would be a lengthy wait. I brought a book with me in anticipation of just that.

I was wrong about the wait.

Millie called a name that sounded to me like Warren. I responded the second time I heard her call the name because Warren can sound a bit like Lawrence thru a mask.  It turns out she was calling my name, so I followed her into a small room that was more like passage way with an opening on one side to waiting and the other side to the emergency department.  Millie stood at a computer and gathered information about me.  A few minutes into the interview, she excused herself, explaining that she needed to get an MRI scheduled.  Things were about to get serious.

Drew came over and introduced himself.  He was the first of many doctors who would care for me during my stay.  He administered the first exam to check for other symptoms of a possible stroke.  I had none.  The numbness, though, was still there in the musculature of the left side of my lips and there was also a slight droopy left eyelid.  At some point, after he had come and gone a few times, he explained that I was to be admitted for observation.

Soon I was taken to a room with three walls and an aluminum-framed sliding glass entry.  As soon as I entered, I was asked to get into the hospital bed.  Alex and Korah introduced themselves and the nurses woo would be getting me ready for what was unfolding.

Alex put a bunch of stickers all over my chest and abdomen and connected the wires to them that would allow my vitals to appear on the monitor.  Korah, at the same time inserted a clear plastic tube into the vein in my right arm that looked like the end of an IV.  Once installed, She used it to draw numerous vials of my blood for testing.

Not too much time went by before James showed up to take me to imaging in a wheelchair where he was the technician who conducted the CT scan on my brain.

After the CT scan was done, Nicole took me back the room in the emergency department where Alex was waiting to re-hook me up to the monitor.

Next, a monitor with a cameral mounted on it was wheeled in and I was examined, with the help of the nurses in the room with me, remotely by a neurologist. 

After the neurological exam, Shannon took me to imaging on the second floor after making sure I had taken out anything that had metal in it and left it in the emergency department. Hunter and Dave were waiting for me.  They asked me to leave anything in my pockets in the outer room with my glasses before switching me to the MRI bed/ table thing and wheeling me into the MRI room and past a sign declaring that the magnet was always on.

I had no real way of knowing how long I was within the confines of the MRI chamber but, if I had to guess it seemed to be perhaps a half hour.

I watched Hunter wiping down the bed / table thingy and other surfaces before wheeling me back to the emergency department.

The next person to stop by was Ashley from the pharmacy to verify my list of medications.

Dawn from administration was next and asked me to sign the admitting forms with the electronic pen.

Stephanie and Kirsten are residents who performed another neurological exam and asked a list of questions. They introduced me to Bobby, who they said was their boss. She assured me that, based on the fact that the CT scan, the MRI and the blood work, that there was no sign of a stroke.

After some time passed Bryan piled my coat and fleece and sneakers onto the bed and wheeled me to the elevator an then up to the fourth floor and to the end of a passageway past numerous nursing stations to my room in the observation wing where I would spend the night.

Jennifer was the technician who made sure the stickers all over the front of me were connected so my vitals could be monitored during my stay.  This was done in a different way on the fourth floor. The wires were connected to a plastic device about the size of a cell phone only twice as thick.  My vitals were transmitted to the nursing station using wireless technology.

Alexis was the night nurse who flushed my IV with saline and asked me another list of questions and asked me to interpret what was going on in a cartoon in a small book she had. There was a woman standing in a kitchen washing dishes while being oblivious to the fact that the sink was overflowing and 2 kids were behind her, one of which was standing on a stool that was tipping over while he attempted to get some cookies out of a container on the  top shelf of the wall cabinets.

She then injected some medicine into my abdomen that she explained was a precaution for suspected stroke patients.  About a half hour later, she returned to check my blood pressure ad temperature.

After a good night sleep, Alex was back to check my blood pressure and temperature.  She told me the carotid check and echocardiogram had been scheduled.

Later, Sam introduced himself as the nurse who would care form me until I was discharged.

At 6 am, Wayne stopped in to wheel me to get my carotid checked by Beth. After that, Wayne took me back to my fourth floor room.

Devan was the next doctor to stop by to tell me I should be discharged that day after the echocardiogram and consult by the neurologist on call.

Kenescha was the technician who would care for me until I was discharged.

The next doctor to perform yet another neurological exam was Arie with the help of a resident with a fun sense of humor. So many times I had been asked to follow a finger left and right and up and down.  So many times I had touched the infer of a doctor then touched my  nose and repeat with the other hand then move my right foot from the shin of my left and move it up to the knee then repeat with the left. So many times I was asked to hole my arms out with my eyes closed to the count of ten and hole my left leg then right leg up to the count of five.

The last doctor to see me was the neurologist.  It was the last exam with many of the same checks as I had been thru numerous times.

She  advised to be aware of headaches, blurred vision, flashing lights in my field of vision, tingling tin the first three fingers of my hand on the same side, asymmetric smile, mental confusion and being unable to form words.  Those would be signs that I should return to the emergency department.

Kenescha wheeled me down to the pick-up area in a wheelchair and my experience was over.

From the onset until discharge, it had been 24 hours.  In that time, unless I miscounted, I had been cared for by 30 people. If you count Valerie, the on call nurse at my neurologist’s office and my neurologist, it was more than 30.

UNECOM

Friday, April 22, 2016

I was awake early enough to leave the house before 7 a.m. I was heading to Boston. It was a sunny day. The roads were dry. I made good time. Before I left my own street, this is what I saw:

When I arrived in Boston it was five and a half hours later. It had been an uneventful trip until I was a few blocks from her building. I knew where I was going and found myself at an intersection where I would have liked to turn right onto Boylston Street. My daughter’s office building is located on Boylston.

It was not possible to make that right hand turn. Emergency Vehicles were blocking the road. There was a fire hose stretched across Boylston just past the emergency vehicles. I had to go around the block. It was a long Block. There was heavy traffic. There is heavy traffic and there is heavy Boston traffic. I'm not a fan of Boston traffic. I was never a fan of Boston traffic. After this experience, I am even less a fan.

A half-hour later I found my way back to Boylston from the other direction and on the other side of her building. I texted her to apprise her of my situation. She directed me to a place where I could park.  There is a lot next to a school where we parked on our last visit when we had dinner at Sweet Cheeks, a restaurant on Boylston Street. When I drove past the driveway entrance to the lot, I found the gate closed. A sign indicated that the lot was full. I drove to the end of the block, turned right and parked near a sign that indicated that parking was permitted for residents only. Welcome to Boston.

I texted Stephanie. She said I would be ok to park there for a little while. She said she would be right down. When she arrived a few minutes later, I asked her to sit in the car to keep an eye on my stuff while I went to the corner across the street to the Thornton Restaurant because I had to make use of their facilities.

After I was relieved, we headed for Stephanie’s apartment in Medford, north of Boston. On the way, we stopped for lunch. We found a parking space on the street around the corner from Bob's Italian Food Restaurant. They specialize in takeout.  It is located a few blocks from her apartment building. She ordered her usual sausage and meatball sub. I thought I would try their Italian sub, made with hard salami instead of the usual salami. After paying for the food we walked back to the car and drove to her apartment to enjoy our food.

After lunch, she packed for the trip to Maine and I rested. I wish I could say that the trip to Maine was as uneventful as a trip to Boston but it was not. It was more like the portion of the trip after I arrived in  Beantown. Stephanie had just purchased a new car. It was new to her, at least. It is a 2012 metallic charcoal gray Subaru Imprezza. Halfway to Maine, one of the lights on the dash came on. It looks like an oil lamp so I pulled out the driver's manual that I found in the glove box. I read what that indicator might mean.

The first item I read was a little scary because it said that we should pull over because it was indicative of an oil pressure problem and we should pull over right away,  turn off the engine and contact a Subaru dealer. I noticed a different indicator light that was similar but had a squiggly line under the oil lamp. I asked her if the light on the dash had the squiggly line. She said it did. I told her that was good. The instructions were not as scary. In this case, it meant that the oil was low and we needed to add some.

We were in New Hampshire at the time. I told her to take the next exit. We should pull off and find a place to buy oil. We found a strip mall that had a Target. We left the car in the parking lot and headed inside. We purchased some 5W20 oil we found in the automotive department. We also found a few other items for her car.

Back in the car, we discussed how the manual did not recommend using the type of synthetic oil we had purchased. We went back, returned it and bought some conventional oil that the manual indicated was okay to use. Stephanie had never changed oil or added oil to a car before so I showed her what to do and we poured in a half of a quart.

We resumed our journey. According to the manual, it could take as long as 15 minutes for the low oil indicator light to go off. Instead, the light went off within a few minutes and we felt much better because it reinforced the thought that the light meant that the oil level was low enough to activate a sensor and was not something more serious.

We arrived in Biddeford, Maine 2 hours after we left Medford. A normal trip without having to stop like we did should take an hour and a half.

Biddeford is town near the University of New England College of Osteopathic Medicine (UNECOM). Stephanie drove to the street where she is going to live to show me the building where her new apartment will be as of July of this year. It is a two-story white residential-looking structure with an optical business on the first floor and two apartments on the second.

After showing me her apartment building, she drove two blocks away to show me where the Hannaford grocery store is where she will do her grocery shopping.

We drove around a little after that and located a nearby Advance Auto Parts store. We went inside to see if there might be some items she could purchase for her vehicle. We saw some snow brushes, but I told her that she might be able to find a better price somewhere else. I also told her that she had six months before she would need to worry about snow. Before leaving Advance Auto Parts parking lot, we took some pictures of a hearse that was parked at an angle in the parking lot.  The hearse had a vanity plate. The vanity plate read “BUH BYE”.

From there we located restaurants using the GPS search engine. That function listed several local restaurants. I read them to Stephanie while she drove. She recognized one that had been recommended to her.

I pressed the go icon next to Pizza by Alex. We found the restaurant to our left as the GPS voice said and parked in the lot next to the building.

Pizza by Alex specializes in one size pizza they call a personal pan pizza. It could feed two people. I ate more than I should have. I ordered pepperoni mushrooms and onions, the way I like it. The pizza was delicious. Stephanie ordered a whole bunch of stuff and spinach. There may even have been artichokes on that thing.  I try not to think about it.

After dinner we drove to UNECOM. Stephanie had been there a month before to interview.  We were visiting because she had been accepted as a student beginning in the fall. We were scheduled to attend an orientation program called “Osteoblast” the following day. Stephanie wanted to show me the places on campus where she had been before and had left her with positive memories.

The first thing she pointed out is the fact that the campus overlooks the Saco River that empties into the Atlantic Ocean. She told me how important being near water is to her and how glad she is that the campus is situated where it is.

Before that trip, I knew that the University of New England was somewhere in Maine. I found out on the trip that it is not too far north of the border between New Hampshire and Maine.

Stephanie found a place to park in one of the campus lots. We left the car and walked around the campus. At one point she led me toward the water in a wooded area toward the river behind some dormitory buildings. We stopped at the edge of a 12 to 15 foot drop. It was a beautiful time of the day to be there. The sun had just set. The Western sky was lit up with purples, oranges, yellows and reds.

From there we walked to a boat shaped shelter at Jordan Point that overlooked the river. We sat there and enjoyed the lights across the river and the shore as twilight have at to darkness. Three coeds sitting on a pile of rocks in front of us were acting like they thought there was no one around for miles until they noticed we were there. They gasped in embarrassment and climbed down to make their exit.

I thought it might be a good moment to enhance the experience with harmonica music.  The Sailor’s Hornpipe seemed to fit the bill. After a few more tunes, we walked around the rest of the campus.  Stephanie showed me some of the buildings that she had visited when she interviewed.

Following our impromptu tour of the campus, we drove to the Ramada in Saco, Maine. The setup of this place is strange. The best access to the place would be from the other direction from which we were driving. We missed the driveway on our first pass and drove around a bit. We needed my GPS device, Google Maps on my phone and her Waze app on her phone, combined to figure out the quickest way to get there. From one point, with the Ramada sign within eyesight, Waze prompted us to drive 15 minutes out of the way to approach the hotel from the other direction. After some discussion we decided, since we could see the hotel, that Google maps offered the best directions.

The circle at the top of the map above, shows the hotel and where we were when we decided to follow the Google maps directions.  The circle at the bottom shows the entrance ramp to the interstate that the Waze directions would have taken us to approach the hotel from the other direction.

The circle near the Lund Road graphic on the map above shows the connecting road where the gate blocked our passage.

While checking in, the desk clerk explained how the highway department would not allow them to provide access to the highway side of the building from the direction we had come. That provided some logic to the fact that the connection between the road we took and the road from the other direction had been blocked by a closed gate. 

There was a weird full-size cardboard cut-out of a strange magician in the lobby across from the desk that someone in the hotel chain must have decided would be a good branding idea.  It was just creepy.

We were both very tired so we went up to the room and unpacked a bit. I put some things in the refrigerator in the room. Before we went to sleep, my wife called because I had texted her and we talked to her for a few minutes.

I had set the alarm for 6:15. I woke up before it sounded and showered. Stephanie took a shower next. Then we went down to the first floor for breakfast. I had packed up my stuff before breakfast.

Breakfast was scrambled eggs, bacon, orange juice and coffee.  There was other food also.

After eating, we went over to creepy magician guy and I took a picture of Stephanie striking the same pose to send to my wife. I wasn't sure my description of its creepiness was enough.

We were ready to check out soon after we returned to the room.

After checking out of the Ramada, we drove to the UNECOM for orientation. Registration was scheduled for 8:30 a.m. in the Lobby of Decry Hall. The 112 students attending the orientation were split into two groups. There was a blue group and a yellow group. Stephanie was given a yellow name tag at registration.  Registration was paired with a half hour for breakfast. There was not a lot to eat. There was  fruit and baked goods on a table at the far end of the lobby.

Before visiting UNECOM, I knew little about what osteopathic medicine. As the day progressed,  I learned more. I also learned more about the difference between a medical doctor and a doctor of Osteopathic Medicine. I even learned a term I had not heard before that refers to the type of Medicine practiced by an MD. They practice allopathic medicine. They focus on the diagnosis and treatment of human diseases. A Do paired osteopathic medicine.

My education that day began when the program started after registration.

From the small lobby of the building, we were guided to Leonard Hall that is located in the same building. I learned that Leonard Hall was the location for many of the classes that Stephanie would attend in the fall and for the next four years. The room is interesting. It is the size of a rectangular gymnasium with three windows on each of the long sides. Each window has a room darkening shade. Above the window, recessed in the ceiling, is a retractable projector screen. There are retractable screens at the center of the short walls also. All of the projection screens were down. Images were being projected on them. It was easy to get a clear view of a nearby screen from any point in the room.

At the center of one of the long walls was a white board. The white board is used at times to project images onto the screens and also enable the instructor to draw on the white board which shows on the screens as part of the lecture.

When the program began, we heard from the associate dean of admissions. She introduced  the dean of the college. He explained how the education process at UNECOM differs from schools that rely on lectures. Studies have revealed that the average time a student pays attention in a typical 55-minute lecture situation is 10 minutes. The approach at UNECOM is to form groups of 5 or 6 students each who work together for the whole semester or the whole year instead of attending lectures.

Next up, was the dean of curriculum or the Associate Dean for Academic Programs. Hers was a most engaging manner of presentation that was energized with humor, passion and emotion. She said that over 4,000 had applied for the class of 180.  I did the math.  The acceptance rate is 4.6%.  She also said there would be more educational time than MD schools including osteopathic clinical skills that MD's are not taught.

After curriculum, two students presented an overview of what the first year would be like.

The emphasis will be on a case-based learning group (CBL) of 6 students. There will be a year-long anatomy course. They used the phrase Osteopathic Medical Knowledge (OMK) many times as well as Osteopathic Manipulative Medicine (OMM). The school promotes group thinking and collaborative work.

The next part of the program led us to a different building for the Opportunity Fair. It was set up in the gym. Tables were end to end around the perimeter and in the center for different groups and businesses that were associated with activities at the college. There was a dance group and an a cappella group, several local financial institutions and the global Health Group, to name a few.

After the opportunity fair, Stephanie was scheduled for lunch. Her chance to discuss financial aid with the Director of Financial Aid Operations coincided, so off we went to talk finances. We waited in a nearby room with a young lady named Emma from Maine who was also scheduled for the same time. She had been waiting there before we arrived so she went ahead of us.

After the financial aid meeting, we had 20 minutes for lunch. The food was in a different building. We had a chicken wrap and salad with fruit and spinach. There were several dressings for the salad and I chose Italian. I also grabbed a bottle of water. We sat at a table with one of the orientation leaders and a woman named Brooke. Brooke had worked at a blood bank and decided it wasn't for her. She was attending the orientation to help her make a decision about her future.

After lunch we attended the first part of a demonstration of how some classes are conducted at UNECOM. It was presented as the case of Ronald Weasley, a fictitious character from the Harry Potter series. The case was about a child who had asthma. It described how the groups of six learn about how to diagnose somebody with a given malady. The first part of the exercise took place back at Leonard Hall, where we had started out the day. First year volunteers marked on a white board while the incoming students reasoned through the diagnosis of the fictional malady.

Part 2 of the Ronald Weasley case was in another building. The demonstration took place in a lab that had exam tables lined up in rows. There were 40 to 50 tables throughout the room. At the center of one of the long walls, six or seven students in lab coats explained how the exercise works. It was a demonstration of how a doctor of osteopathic medicine would manipulate someone who had breathing problems to help them breathe easier.

Before demonstrating the manipulation, they showed everyone how, by placing hands on the back of a person, it was possible to assess whether there was a problem with their breathing based on the comparative rise and fall of one hand to the other.

The next scheduled event required me to part company with my daughter. Stephanie went to a medical school panel discussion. I attended the significant other and family panel discussion. The panel was comprised of students and parents and spouses who were discussing the expectations of what it is like to be related to somebody attending medical school.

The last event before the campus tour was back at Leonard Hall. It was a raffle. Stephanie had accumulated six or seven raffle tickets through the day. None of them were winners.

Following the raffle, we located one of the orientation leaders outside near one of the entrances to the building.  She was gathering folks interested in a tour of the campus. Nicole was our guide. We learned that her mother was a DO and had given helpful advice to her daughter as she experienced medical school at UNECOM.

After the tour we drove to Jimmy the Greek's, a local restaurant where there was a COMmunity Mixer. COMmunity is spelled with a Capital COM for College of Osteopathic Medicine. The schedule of the day’s events had several examples of similar creative spelling to accent the school’s acronym. Another example is the COMpanion that is assigned to first year med students as a mentor of sorts.  Their duties are more spirit guide than mentor, providing emotional support to help the first year student adjust to the demands of med school so they can avoid feeling as if they are doing it all alone.

At the Jimmy the Greek's mixer, the restaurant had set up a tray with vegetables and dill dip. There was also one with cheese and crackers. While we were next in line for the food, a guy came over and took away the cheese and crackers and the vegetables and dip, though there was more food left on them. We thought he would bring some back but he never did.

We ordered from the menu instead. I had garlic and parmesan chicken wings. Stephanie ordered fish tacos. Stephanie did not mingle as much as you would have wanted to. Instead, we sat at a table with a couple who are planning to be married on July 9th. The name on the guy 's “hello my name is” tag was Robert but he introduced himself as Bobby. His fiancé’s name is Mary Rose. Bobby was intense and focused. He was excited about the decision he had to make between Tufts University and UNECOM. Coming into the orientation he said he was ninety percent certain he would be attending Tufts. At the end of the day at the mixer, he said it was back to 50-50. I took that to mean he was as impressed with the school as was.

There was a woman at our table who had participated in the significant other and family panel discussion. Her name was Crystal. She is married to a doctor of osteopathic medicine. Her son is looking to enroll in the school.

We left Jimmy the Greek's at 6:30 and heading back to Medford. Back at Stephanie’s apartment, the  exhaustion of the day overtook me. Stephanie checked the times for the events she had planned for the next day.

On Sunday morning, I woke up earlier than my alarm. I made some coffee. At 7:30 we decided to take my car to the diner for breakfast instead of the Imprezza. We took a few things and put them in the trunk so I would not have to take care of it later. As it turned out, that was a smart move.

We had breakfast at the Medford Square Diner. Stephanie looked up where the Penske Truck Rental location was, using her smart phone. It was on the same street as the diner and only 4 miles away. We drove there and I parked the car. Stephanie went inside with the woman who had just parked the van we would be using. She filled out the paperwork for rental.

From Ryder, we drove to my daughter’s apartment and put her mattress in the van. The concept of this endeavor was to exchange her mattress for a more comfortable one that her co-worker was leaving behind after he moved out of state.

We drove the van into Boston and parked in a driveway between two buildings, one of which was the apartment building where her co-worker, Ahmer lived. We were there to pick up several pieces of furniture and other items, in addition to the mattress, that he was not able to take with him on his move to Utah the following day. He introduced us to his friend Alyssa who was at his apartment helping.

It was a studio with a separate bath and kitchen area off the main room.  There was a storage area also connected to the kitchen. We loaded the mattress and other items into the van and somehow managed to get everything to fit in the cargo area. The cars parked on both sides of the street made it a little tight pulling out of the driveway. It was fortunate that I was there to help guide her back onto the street.

Then we drove to Kwame’s apartment. Kwame is another co-worker who agreed to take some of the items that Ahmer was unable to ship to Utah. Once again we parked in the driveway between two buildings. Stephanie helped Kwame carry the frame, box spring and mattress up to his apartment. I stayed with the truck to take out the items that would not be making the trip back to Medford.  Those items were strewn about in front of the apartment building when we drove away waiting for Kwame to bring them inside.

From Kwame’s we headed back to Stephanie’s apartment to unload the remaining items. We put the mattress inside the anti-allergenic cover. Stephanie set it in the frame that was still on the floor in her bedroom.

We drove the van back to Penske. It was too late to get the final paperwork because we arrived 45 minutes after the business closed. Stephanie found a parking spot at the rear of the building then deposited the key in the drop box.

I drove us back to her apartment in my car and loaded the remaining items I had brought for the trip. On the way home, I made a wrong turn in Boston. Traffic combined with confusing GPS directions cost me twenty minutes before I found my way.  Perhaps this was appropriate and served as a bookend for the issue I experienced a few days earlier when I had arrived in Boston. Once I found my way back into the interstate,  I experienced a smooth trip unencumbered by any further delays.

The Petition

I was out of work. The recession had been long and difficult. The phone rang one day.  It was a woman volunteering with a grass roots political organization. I got involved.  It did not last. The thought of screening people according to political party affiliation during a register people to vote event did not seem to be the right way to go.

Before distancing myself from the organization, I had the opportunity to meet the staff of our representatives in Washington. That was a good experience.

As a result of that day, several years ago, when we visited the office of one of the United States senators from New York, I received a recent call from a candidate who is running for Congress. That candidate had been working for the senator back then. I was in Boston at the time waiting for my daughter to return a pair of boots that were defective. I mention that detail because I find it interesting how sometimes out of the ordinary things happen at unexpected times in life.

The call was to explain why and to ask for my support.  I shared my concerns as an under-employed architect.  I was asked if I could help with a donation.  I explained how times were tough and I was unable to help that way but offered my time instead.

Several weeks later, another person involved in the campaign called and we scheduled time for me to help. When I hung up the phone, I had no idea what that would entail.

I was given an address to report to and a phone number to call to gain access to the building where the campaign headquarters was located.

I thought I knew where the building was, but punched the address into the GPS just in case. It directed me to the vicinity of the place in a round about way I would never have chosen. After a few failed attempts at finding parking spaces in lots with signs that threatened to have my car towed, I was able to find a spot on the street just a block from the building. According to the street signs, there was an hour left that required payment to the parking meter machine. I paid the required fee, placed the ticket on my dash then walked to the building near a church parking lot. There was a security num pad that required a code to gain access.

My contact with the campaign had alerted me to this eventuality so I called the number and got the code. The traffic noise required me to ask him to repeat the code, but I tried the numbers I thought I heard was granted access by the electric  strike.

The weather on that day in late March was much warmer than average. As I walked through the entrance door, I was glad I had decided to wear my fleece because the temperature inside the building was at least fifteen degrees cooler than the comfortable high sixties outside.

The entry was a space void of people with an empty reception desk a few feet from the entrance door and elevator doors at the far end. My instructions, in addition to the entry code, included following the signs though the building to the campaign headquarters.

My usual inclination is to find the stairs if i need to get to an upper floor of any building. In this case, since I had to rely on signage to learn where I had to end up, I opted for the elevator. Stepping through the stainless steel doors, I pressed the button for the third floor per the instructions on the first sign.

When the elevator doors opened on the third floor, the next sign directed me to the right and through a closed door. Opening the door revealed a open, u-shaped stairway to the right of the corridor floor. A sign directed me through another closed door at the other side of the stair.

Each space I entered was defined by brick walls painted the same off-white color.  When I opened the second door on the other end of the stair landing, another sign was affixed to those walls with an arrow directing me to the right.  The sameness of the walls and the turns made me think of a hay maze. That thought had materialized at the moment I saw the final sign directing me to the left through the last closed door.

That last door revealed a fifteen feet by twenty feet long space with a wood strip floor and the same painted brick walls.  There were three desks spaced a somewhat equal distance from each other like islands near the center of the room.  Another desk hugged the wall to my right.  Each desk had a young person sitting at it.  The windowless walls were bare. Papers were strewn about the room in no discernable order. The three people at the center had phones and were in the process of making those political calls we all receive as elections draw near. There were two doors at the opposite end of the room from the entry door that opened to small offices with windows.

I asked to be directed to the person whose name I had learned a few minutes earlier while gaining access to the building. She was in the office at the left. I introduced myself and she proceeded to explain how I would be helping the campaign.
Most Americans are barraged with national political discourse for years leading up to a presidential election ad nauseum.  As I stood in that tiny office listening to the orientation speech from an enthusiastic young lady, it occurred to me that I was participating in the real political process at a grass roots level.

My role that day was to gather signatures of registered voters to enable the candidate to appear on the ballot in the primary to be held three months later.

My research revealed that the founders of this great country thought the House of Representatives should be the legislative body that is closest to the people. It should be the least restrictive on age and citizenship. According to James Madison, “Under these reasonable limitations, the door of this part of the federal government is open to merit of every description, whether native or adoptive, whether young or old, and without regard to poverty or wealth, or to any particular profession of religious faith.”

According to New York state election law section 6, paragraph 136,  “Designating petitions; number of signatures, 1. Petitions for . . . any office to be filled by all the voters of any congressional district, twelve hundred fifty signatures” are required. I am certain there are many more than me working to accomplish that goal.

I stood there listening to a description of what was expected of me. I was given the tools I would use to accomplish my task. Those tools included a clipboard and a stack of colored glossy flyers describing the candidate on both sides. The clipboard held the petition, a simple map of the assigned neighborhood, a list of registered voters affiliated with my political party, and a script with a suggested greeting and explanation of why the petition was required. Also attached to the clipboard were absentee ballot forms. I was encourage to use the script as a guide and to express myself in a way that I would be most comfortable with.

My task included five objectives:

• Obtain signatures. 
• Ask if the candidate could count on their support for in the primary. 
• Provide information about when the primary would take place. It was different date than the presidential primary by more than a couple months. 
• Ask if they were interested in volunteering on the campaign. 
• Provide the absentee ballot form, in case a voter might need them in order to vote in the primary.

The map had thickened lines representing streets with the street names that told me where I needed go. It was a section of the city near where I had lived years ago. I made my way back through the hay maze, taking the stairs, since this time, I knew where I was going.

I drove to the assigned neighborhood, found a place to park on the street and took a few minutes to orient myself from the map to reality. I found a space in front of a house a few lots in from the corner on one of the assigned streets. It took a few minutes to compare the list of voters to the spots on the map representing where they lived.  I was told the list was alphabetical, but I discovered it was numerical and matched the numbers up and down the block.  I marked the numbers on the map next to the dots that represented the houses.  This proved helpful to me later.

Most of the residents were home so I was able to move along and get a dozen signatures.  The people were friendly and concerned to make an informed decision.  I figured out the best reason I could offer as I went along for those few who thought they could not sign because they did not know anything about the candidate.  I asked them to at least give the candidate a chance by appearing on the ballot. A signature on the petition did not mean they would be prevented from voting however they chose to in the primary.

This experience afforded me a refreshing and different outlook about the political process. It is about more than a few loud mouth candidates monopolizing news time by saying off-color and insulting things. It is about real people participating in the process. It is about concerned citizens who want to do the right thing. It is about a system that can work.

If only the group of representatives at the other end of this process who get elected can remember the earnestness of the people like those I met that day who signed the petition.

Southborough Station

The sign on the one-story wood-frame building declared "Fitzgerald’s General Store".  I thought how the term “general store” was a throw-back to earlier times and, being located within an hour's drive of Boston, Massachusetts, it seemed out of place. As I steered to a spot at the perimeter of the unplowed lot facing the tracks, I failed to notice there was a continuous fence separating the parking lot from the blue metal-roofed shelters of the train station.  I had not driven to shop at a general store.

I switched off the engine and headed in the direction of the store behind me. 

It was late afternoon in January. I had left the Embassy Suites in Marlborough, Massachusetts fifteen minutes earlier. Our trip began several hours before that from Syracuse, headed for Medford, Massachusetts that is north of Boston. The stop in Marlborough, on the way to Medford, was for the Innovative Bead Show.  We had plans to have dinner with one of the vendors at the show.

Since the train station did not have a building with a waiting area as I had hoped, I had to locate an alternative place to attend to necessary things before waiting for the train to arrive. The train would be transporting my daughter.  She was meeting us to have dinner. After dinner, we we would drive her back to where she lived in Medford.

After entering the general store, I looked around to see if there was a restroom.  The store had a different look. The items being sold were displayed between narrow aisles in island rows.  The rows closer to the entrance door were parallel to the front. Those toward the rear of the store were perpendicular to the front wall.  It looked more like a corner store than a general store, but not, somehow.  It was just different.

Two people engaged in conversation stood near the door facing toward the front.  I guessed they may have been be waiting for something since they did not appear to be shopping.

I had not walked ten steps down the main aisle before I noticed four or five rows of alcohol for purchase.  I thought they looked out of place. I suppose I still expected to see general-store-like rakes and wheelbarrows and shovels on display. The image I had in my head included two guys of retirement age in plaid shirts and fishing hats sitting on opposite sides of a pickle barrel playing checkers. This place was nothing like that. 

The man behind the counter had black hair and a mustache.  He could have been of Middle Eastern or Mediterranean ancestry. It seemed unlikely that he was a Fitzgerald. 

After locating the rest room toward the rear and to the right, I read the sign printed, in broken English, that I should request to use it before going in.  I walked back to the front and asked Mediterranean Man if it was okay.  He said it was.

Inside the unisex toilet room were cases of various items and a dim ceiling light that grew brighter as I went about my business. I figured it had to be a compact fluorescent lamp, even though it was the color of an incandescent bulb.

I felt guilty about wandering in just to use the facilities, so I grabbed a bag of Frito's on my way back to the door.  After paying for the chips, I left and walked back to the car.

Once I was seated behind the wheel, I looked back and forth at the fence separating the train platforms from the parking lot and realized I had not parked in the lot for the Southborough Station.

I started the engine, backed out of the parking space and drove out of the lot past the general store and around the corner.  There was a sign marking the drive to the Southborough Station parking lot not far from the corner. I turned right and drove past the small lot to the right of the entrance road. It appeared full.  

Above and behind that lot were two parallel railroad tracks and a pair of open shelters with blue metal roofs on both sides of the tracks.  The shelters were connected with asphalt-paved walks next to the tracks that led to concrete grade stairs leading down to street level where the tracks bridged over the road.

I drove to the end of the access road with the tracks to my right and a 300-plus-space parking lot to my left. The lot was almost full.  I found a vacant space and parked.  I read a David Sedaris essay and waited for the train.

My phone alerted me at the same time the train was scheduled to arrive.  By then, dusk had settled over the lot and the station. It was a text from my daughter. She was approaching.  I looked up to see a bright light from the end of my view of the tracks.  As it approached, I heard the sound of the engine. Within a short period of time, the train filled the station and came to a stop near me to the sound of a clanging bell. 

I waited to see where the passengers were getting off.  I could see no one.  Then the train left the station.

Had I missed her?  Did she miss the station?  The text I received told me that was not probable.  I restarted the car and drove back toward the small lot I had passed when I entered.  I noticed more cars lining the road next to the lot.  It was people waiting for other passengers.  When I was near that small lot again, I noticed people walking above at the level of the tracks.

I spotted a vehicle leaving one of the parking spaces.  I figured it would be a good vantage point to spot my daughter.  People were walking past my car on the sidewalk between the vacated space and me. Turning into the lot took more time than I figured.  People walking by and cars leaving the lot prevented me from turning in. One of the drivers near me became impatient and started beeping their horn.  They must have thought I was double-parking or something.  I ignored the sound and found an opportunity to make my turn.  As soon as I had parked in that space, my daughter spotted me and walked over.

After she was inside and her door was closed, I drove out of the lot and headed back to Embassy Suites.  It was time to share stories about what had happened since our last time together.

Mom

The eulogy.  If there were do-overs in life, I would like to have another chance at that.  When I first decided I wanted to say some words about Mom at her funeral mass, I was not sure I could get through it.  My brothers suggested I write it out and ask the hospice chaplain.  When I called him, he had a previous engagement and was unable to do it.  I mentioned it to the funeral director who told me it is better if a family member delivers the eulogy. So, it was decided.

I asked my aunt and brothers for some stories they remember about mom.  After making some notes, I knew what I was going to say.  I had enough stores to tell. The funeral director also suggested asking a family member to stand next to me just in case. 

With my wife at my side, I began my remarks with the summarizing sentence I had decided to begin with. Mom was a teacher. I had expected I might break down in the middle of what I was saying so I planned to avoid mentioning certain things.  I did not predict that I would react the way I did.

I wanted to talk about my close relationship with my mother in the last days of her life the most, but thought that would not be the best thing to talk about at her memorial mass. The following is what I would have wanted to say.  It is what happened, beginning on the Thursday before she died.

My aunt was involved in organizing a fundraiser for her quilting group.  It was called Galaxy of Quilts.  Since my wife is a beader, my aunt asked her if she could help with the fundraiser by running a booth that displayed the jewelry she has created.  We drove from Syracuse to Tonawanda on Thursday afternoon.

When we arrived at mom’s, my older brother Marc was there, visiting.  Mom was lying in the hospital bed that Hospice had dropped off 2 days before.  Hospice had suggested the bed just as a precaution.  Who knew at that time that Mom would only need it less than a week?

Mom told Marc to give me my cap.  The last family vacation Mom was able to go on a few months earlier had produced a flyer she picked up at QVC in Pennsylvania.  She had ordered red caps from that brochure with the polish falcon and the family name in white on the front above the bill of the red ball caps.   My brother went into the other room and came back with mine. The joy my Mom had in doing something special for her sons made the visit seem so normal. That moment remains a vivid memory.

We visited with Mom awhile before heading to St Bartholomew’s Anglican Church, where the Galaxy of Quilts was to be held.  I helped Kathy set up her booth. 

Aunt Joyce mentioned that Mom’s health had taken a turn and things were not looking good.  She said she planned on moving in with Mom to care for her on Sunday.  I went out for Chinese take-out for the ladies and stayed to lunch with them before heading back to mom’s. I stopped at Starbuck’s to check my email because I was expecting something from the guy I have been working for.  Kathy and Joyce had beat me back to Mom’s and another Kathy, a nurse from hospice was there to check up on mom.  She said they were trying to get her “plumbing” working.

That Thursday was also our 32^nd wedding anniversary. We celebrated by going out to dinner with my aunt.  Mom stayed at home because everything she ate for the past 2 years tasted awful.  Other than that, and the fact that my mother was lying in that hospital bed, it still felt like a normal visit with mom. 

After dinner, we stopped to buy a set of light-blue longer sheets to fit the hospital bed better than the normal twin-sized sheets. 

There was a hint of something other than normal when I arrived back at Mom’s house following dinner.  My wife was staying with my aunt so they dropped me off and were on their way.  The light to Mom’s bedroom was on and Joyce figured she had already gone to bed. 

As soon as I went inside, I learned she had not.  She was sitting at the edge of the hospital bed in the family room dealing with pain and nausea from the cancer that was spreading inside her.  It was the beginning of my crash course in being a caregiver. 

I sat next to her.  Not knowing what else to do, I held her hand and rubbed her back.  Mom said, “I don’t want to be a burden”.  I assured her that she was not a burden. She asked me, “Why doesn’t He take me?”  

“I don’t know.” Was all I could think to say.   Mom asked me to take care of Joyce after she is gone.  I assured her that we would.  She said she was tired of taking all the pills. 

She was able to lie back down after a time. The Bills were playing that night and my Mom suggested that I put the game on.  It was too early, but I found the broadcast later.  Other than the distress she was experiencing due to her illness, everything else still seemed as normal as it could be.

That all changed at 2 o’clock a.m.  Mom had retired to her bedroom at the other end of the house not long after the football game started.  I asked if she needed any help and she shook me off. 

I watched television until 11:30, changed the sheets on the hospital bed to put on the new light-blue ones, then retired to the spare bedroom across the hall from hers.

There was a thumping noise that woke me up at 2.  When I got up to investigate, I found Mom kneeling next to the tub in the bathroom across from her bedroom, gasping for air. At first I thought she was getting sick.  I figured out later that she must have attempted to stand and had trouble breathing then discovered she was unable to walk.  She told me she couldn’t breathe.

I helped her to her feet and tried to pick her up to carry her to bed.  She shook me off and insisted that we walk.  Walking backwards, I took her hands and led her back to her bed, one slow step at a time.

I went to the kitchen after tucking her in so I could get the number for hospice.  There was a problem with the main phone number but I was able to leave a message on their service using the second phone number listed on the fridge.  A hospice nurse called back within 5 minutes.  I explained what was going on and she told me to get some medicine from what they refer to as the “comfort package” that is kept in the refrigerator. All the pills for pain, nausea and relief are kept in there so Hospice knows where they are.

I would learn that, up until that day, my mother insisted on controlling the meds she was taking. Understanding the similar names of her medications was confusing to me, at first, until hospice stepped in to help. There were 12 to 18 bottles of pills in her kitchen cabinet to add to the confusion.  Each bottle had 2 different medical names and the largest name on the bottle was not the name that the nurses used to refer to them.  It is a generic versus brand name thing.  That first night, to me, was most alarming, but hospice, as they proved to be through the entire weekend, was only a phone call away and cut through the confusion to enable me to provide the best medicine required to aid in Mom’s comfort.

Before the nurse called, Mom mentioned that she had not taken her evening pills. I mentioned that to Nicole, the nurse on the phone, who then told me which pills would help with the nausea and which would help her relax.  She also asked about Mom’s position in bed and instructed me to prop her up on her pillows to help her breathe better. 

I learned later that the difficulty breathing was caused by the cancer growing in her lungs.  The pancreatic cancer had spread to her lungs a year before. It was on September 25, 2012 when we learned that from her physicians. The technical term is metastasized. Once the cancer metastasizes, it is, by definition, stage IV cancer.

It was in August, 2013, that Mom signed up with Hospice Buffalo for palliative care that focuses on relieving and preventing suffering.

I was aware that it was important to Mom to be involved with what was happening so I asked her what she wanted to do, based on the options Nicole suggested.  She opted to have a nurse visit to check on her right away. I sat on the edge of the bed, rubbing her back.  She said, “I can’t do this any more”. 

When I reflect on that moment, 3 things come to mind. 

The first: that may have been the moment when Mom decided it was time to begin to let go. 

The second is the awareness of all she had been enduring over the previous several months, back to December, 2011 when she first was told by an emotionally disconnected medical “professional” that she had cancer.  That person made no physical contact, then left the room right away, leaving Mom to deal with the meaning of what she had been told all alone.  The contrast between that first interaction and the amazing sincere degree of care she received from the hospice nurses is startling. As I have said before, the hospice nurses and personnel are truly angels on this earth.

What Mom had been enduring began many months prior to that December because food began tasting nasty.  I cannot imagine what it must be like to attempt to maintain nutrition levels when everything you eat tastes like the worst food you have ever eaten.  To confound matters, Mom said many of the medical professionals were under the mistaken idea that she suffered from loss of appetite.  It makes me wonder how these medical people can know how to treat a disease when such a basic symptom is misunderstood. 

The third was that it stopped being about me. It became all about what mom wanted.  It was about what mom needed. Until that moment, I had worried about losing my mom.  I worried about how I would be after she died. That ended when mom told me she could not do it any more.  I made the transition from hoping she would pull out of this episode.  It was the beginning of the focus of all my efforts toward helping her with her final journey. 

I just did not know it yet.  I was too busy processing what was happening.

Tracy arrived at 3:15 a.m. By that time, the medications that hospice asked me to give Mom were working.  She was able to breath better.  Tracy said Mom’s heart and lungs sounded fine.  It reminded me of something Mom had said to me earlier, before she went to bed.  She had told me the doctor said she looked good on paper.  Her heart and lungs were strong. It was not long after she had asked me again, “Why doesn’t he take me?”  Those words stayed with me all weekend.  “I don’t know, Ma”. 

After checking Mom’s vitals, Tracy rubbed her back and asked her if that felt good.  Mom told her it did.  It was my first lesson about how the instincts of a loving son can find the right thing to do.  I mentioned to Tracy how Mom had expressed concern about becoming a burden.  Tracy told her that she had been a teacher and had raised a family.  She had helped so many people in her life.  Now, it was her turn.

We talked about the fact that Mom had said she can’t do this any more and wondered why He doesn’t take her.  Tracy said it was good that Mom is vocalizing that she wants it to be over.

After Mom was able to get back to sleep, Tracy walked with me into the kitchen and explained what to expect.  At that time, I remained optimistic.  The reality of the situation would not hit until later that morning after the next nurse stopped by to visit.

Tracy told me that there will come a time when Mom might get up to walk and will discover that she is no longer able to do so.  I did not realize then that the time had already occurred.  The slow step-by-step walk from the bathroom to her bed an hour and a half earlier was the last time my Mom would ever walk.   Her body was changing.  Her body was slowing down.  Her body was telling her it does not want food.  Her systems were in the process of shutting down. 

Tracy told me that some dying patients hang on until certain issues are resolved.  We talked about Mom’s cats.  Mom had expressed to me several times in the recent past that she felt bad about her two cats and wished she could find a good home for them.  Tracy also said that sometimes symptoms can result from stress.

Tracy explained that Mom’s abdomen was swollen because of ascites (pronounced ah-site-eez). This accumulation of excessive fluid in the abdominal lining, causes the belly to become swollen and distended. The condition is caused by the cancer.  This swelling also affects the functioning of the diaphragm which contributes to the difficulty breathing.  She explained that the position in bed propped up with pillows helps.  She also told me that the burping was better than nausea and that Mom needs to sleep. 

Tracy said it was time that someone be with Mom all the time.  I explained that I would be there until Saturday then Joyce was planning on moving in on Sunday.  Tracy said that was perfect.

In addition to telling me all those things, Tracy let me know that another nurse would be stopping by after her shift began at 8 a.m.  She said hospice will consult with Mom later that day to discuss her medications. After walking Tracy to the door, I checked in on mom, then went to sleep myself.

Mom woke again at 5:30 a.m. She was having trouble breathing.  I sat with her on the edge of the bed.  She said, “I want to die.”  “I know, mom,” rubbing her back.

I called hospice.  After Nicole returned my call, she said the doctor said it was time to begin giving Mom morphine sulphate.  It is a liquid that required refrigeration and I was instructed to give it to Mom on an as-needed basis.  I was concerned about the morphine, but the nurse explained that, in addition to being a pain-killer, it also helps open up the lungs to help Mom breathe better.  Once we began with the morphine sulphate, we discontinued the previous pain medication according to the doctor’s instructions.

I was wakened by a text from my wife letting me know she and Joyce were going to stop by on their way to the quilt show.  I staggered into the kitchen after looking in on my sleeping mother.  She had kicked off the covers since the wee hours and I felt her skin to discover her body temperature was elevated.  Her hands had been cool to the touch since we arrived the day before.  I wondered if she was feverish.

When Kathy and Joyce stopped in, I told them what was happening.  They asked me to let them know if there was anything they could do.  I told them I would relay to them know what the nurse says.

I went back to bed and lingered until I went back in to check on mom.  She was awake and asked me to take her back to the hospital bed in the family room.  She asked me if I had gotten any sleep.  I told her I had, I gave her a ride in the wheelchair that hospice had provided.  She was there waiting when the nurse stopped by.

Hilda arrived to examine Mom at 8:30. Her blood pressure was low but she did not have a fever. Her body temperature may have risen to fight the other things that had been going on in her body.  The nurse said we need to get the fluid out of Mom’s lungs.  She talked with Mom and called her “Miss Dolores”.   She explained to Mom what she was going to do.  Hilda gave Mom the medicine she needed to get the fluid out then catheterized her because she said there would be a lot of fluid and it would be impractical and exhausting for Mom to run to the bathroom all the time.  Mom said it was uncomfortable but Hilda assured her that, though it felt like she had to go, the catheter would take care of it and she would get used to the feeling after a few days.

Hilda showed me how to empty the urine bag and suggested that if the medication she had given Mom for the fluid build-up proved ineffectual, that I should continue to give Mom the morphine sulphate.  Hilda showed me how to measure the proper dosage using the plastic syringes that were in the comfort package in the refrigerator.  She suggested starting with a half-dose then giving Mom the remaining half if things did not improve after a half hour. It was not long before I concluded that as-needed meant the full dosage every two hours.

While Hilda was still there, the phlebotomist came to draw blood.  She had trouble finding a vein and Mom said she had rolling veins.  Hilda commiserated with her.

Hilda told Mom that she needed to take it easy for the rest of the day.  She could move around in the wheelchair if she wanted to but no walking around. Hilda left at 10:45 a.m. She said if I had questions that I could call Kelly, another nurse at hospice. 

Before she left, Hilda told me that this could be a low point that Mom could bounce back from but she may not.  She may not.  After Hilda said that, it became my main focus to make the rest of Mom’s life as comfortable as I could.  Hospice was essential in helping me do so.

I called my brothers right away to tell them what the nurse had said before leaving.  She may not.

Mom and I talked a lot that day.  I told Mom that I regretted not being more helpful when I was a kid.  She recalled the time when I had my first full-time job.  I was sitting in the yard and she asked me to do something.  I told her, “Ma, I worked all day”.  This was the typical day when she would wake up and fix us breakfast then make our lunches.  She would drive to work and teach school all day then return home to prepare supper, feed us, clear the table and wash the dishes.  She did all that day after day and all I could offer was to tell her that I had worked all day.

Mom told me that she never told us how much she loves us enough when we were kids.  I told her we knew and that I loved her so much. She asked me to tell everyone for her. I said I would.

In between conversations, Mom slept.  She would talk in her sleep.  Most of what I heard was incoherent.  I asked her if she had been dreaming.  She said she had not.  Tracy had mentioned dreams before she had left.  I figured if Mom had no recollection of her dreams, there was nothing more to discuss.

Mom asked for her puzzles in Friday’s paper.  I found her glasses on the night stand in her bedroom.  She looked at her puzzles then rested. After numerous attempts, she said she was unable to concentrate.  I asked what I could do for her.  She told me where to find the dry cat food so I filled the dishes for her cats.  She taught me how to refill the water bottle that supplied the water dish for the cats to drink.  She was weak from her illness and was struggling to breathe but she managed to make sure Misha and Willow were cared for.

At one point, Mom rolled over on her side and asked, “Where did the blue sheets come from?” I told her we bought them because they fit the bed better.

A United Parcel Service truck pulled up in front of the house and two packages were left on the bench Mom has outside her main entrance door.  I took them inside and placed them on the couch in the family room near mom.  When she woke up, she said the small box had hull-less popcorn in it.  She suggested we all take some and enjoy it.  Later she asked me to put the larger box in the craft room.

My brother Mike stopped by to visit in the afternoon.  When I had not heard from hospice to discuss the medications, I called because I was concerned that Mom had not taken any of her regular medications since Thursday morning. The nurse who spoke with me this time was Valerie.  She said another nurse would stop by later to discuss the medications.  Kathy and Joyce arrived while I was on the phone.  Mike suggested creating a log sheet for the medications.

Later, Darlene stopped by to help organize the medications. She was the fourth hospice nurse I met since arriving the day before.  She gathered the pills that were no longer needed and showed us how to dispose of them.  She organized the relevant pills into a daily organizer and wrote out the names of each one and when it was to be taken.

I thought about Mike’s suggestion and created a log sheet for the as-needed medications.  I would read in the hospice caregivers handbook that such a log was a good idea.  I texted Kathy and asked her to create a spreadsheet and print out a few copies using Joyce’s printer.

I slept on the couch in the family room near mom.  She had developed a constant gurgling sound with each breath that was caused by either the fluid building up in her lungs or the inability of her system to swallow her saliva.  I noticed that when it came time to give her more of her medication, that sound would be more pronounced.  It would alert me to put more of it under her tongue as instructed by hospice. Then her breathing would even out again. 

When I woke up with her medication early Saturday morning, I noticed that her sheets were soaked.  At first I could not figure out what caused it.  With the catheter in, I  knew it could not have been incontinence.  Besides, while I was changing the sheets, Mom was sitting on the commode seat and told me her bottom was dry.  She also told me she drools a lot.  She was still teaching me.  I figured it had to be saliva.  I found out later from hospice that she may not be able to swallow so well any more but her ability to produce saliva remains unchanged. 

I needed to get her clean sheets.  She explained, one word at a time, separated by pauses to gain her strength and catch her breath, that the sheets in the linen closet were grouped by sets and stored in a pillowcase that belonged to each set.  The sets with two pillowcases were the sets for the double bed and those with one were for the twin-sized bed.  She was still teaching.  I also needed help finding her clean pajamas.  She told me right where to go to find them.

While she was changing her pajamas the first time, I tried to help her only if she needed help.  She asked why it was so hard.  Her energy level continued to fall.  Then she said, “I bet you never thought you would be doing this for your mother.”  Her good humor never wavered.

Later that morning, it could have been 3 or 4 a.m., it was time for her medication again and once again the sheets were soaked.  This time I noticed some blood on the sleeve of her pajamas.  I did not point that out to her.  I figured she already had enough to deal with.  Hospice informed me later that it was a result of the cancer in the lungs.  After I had changed the sheets from the first time and she was back asleep, it dawned on me that I should have helped her clean herself up before putting on the clean pajamas.  I did not miss the opportunity the second time.  I told her I was going to get a washcloth so she could give herself a sponge bath.  “Warm”, she said. Every communication now was an economy of words. Of course, I thought, as she continued to teach me how to be a caregiver.  I walked to the other end of the house for the washcloth, ran the water until it became warm, wrung out the washcloth then was back again.  I had a momentary concern about leaving her sitting unaided but she assured me she would be fine.  She was. 

When I returned with the warm damp washcloth, she said, “Towel?” Still teaching.  Back to the other end of the house to the linen closet I went.  By the time I returned with it, she had finished and dried herself with the towel.  She told me to look in the next drawer for clean pajamas and said, “Purple.”  The purple pajamas my daughter had bought for her for Christmas were right where she said they would be. After we got her back into the bed with the next set of clean sheets, she explained how warm the purple pajamas were.  I made sure to mention that to my daughter when she arrived since Mom had been struggling, in general, to stay warm for months. The pajamas turned out to be the perfect gift.

Hilda had left a package of absorbent pads under the table near the bed.  I selected a couple to spread out beneath mom, in case there was a recurrence.  I unfolded a third pad and tucked it under her chin.  “Just in case, Ma,” I told her.

We both slept until daylight.  When I awoke, I checked and she was dry this time.  Mom asked me if I got any sleep.  I told her, “I sleep when you sleep, Ma.  It’s all good”.

Kathy and Joyce stopped by on their way to the Galaxy of Quilts again and I asked if they could stay awhile so I could shower.  They did.

After they left I laundered the sheets.  I asked Mom what to do and she taught me how to use her washing machine.  She said, “You are going to think I am crazy . . . “, then proceeded to tell me about the laundry balls she keeps in the machine.  They take the place of detergent and made doing the laundry as effortless as possible. 

The kitty litter was getting low in the litter baskets so I asked Mom how to replace it. She taught me how to do it the way she does. 

I knew from reading the caregivers handbook that hospice had left with us that it is not a good idea to attempt to force her to eat.  I was careful to ask her if she wanted some of her ensure or some orange juice. Each time, she responded with a wince.  I told her it was ok.  I was beginning to understand what was happening.  At first I was hopeful that she would bounce back like Hilda said. Now it was becoming more and more clear that ”she may not”.

I asked her if she wanted to watch television.  She said it was Saturday.  There was nothing on that she wanted to watch.  We talked about shows she had recorded.  She said it did not matter.  She could not concentrate.  I wondered what must have been going through her mind.  We talked about the two-part Criminal Minds that she could have watched.  She remembered seeing part one and I had watched the conclusion the night before we left Syracuse.  It seemed sad that she would not even be able to find out what happened.  At the same time, it seemed that things like that no longer mattered.  I told her I had wished she had seen it so we could have talked about it.

Later I had wished I had talked to Mom more that day and the next. Then I wondered if that would have been wise, since she needed to sleep more. I know when I needed to give her the medicine, she would always open her eyes and help me place the morphine sulfphate under her tongue by lifting her tongue for me. 

I had called hospice because I had questions.  Colleen called back this time.  Keeping her warm, clean and dry was all I could do at this point.  She told me that the morphine sulphate would have no effect on the gurgling sound I heard with each breath Mom took.   There was a pill in the comfort package called hyoscyamine, which I never was able to say with any consistency. Levsen was the term the nurses used for it.  She said to place one pill under Mom’s tongue every six hours.  Once I started doing that, the drooling issue was under control.

Mike and Mary visited.  Kathy and Joyce stopped by again after the quilt show was over.  We ordered Chinese and Joyce told us she would make arrangements for the priest to stop by to administer the sacrament of the sick on Sunday. 

Mom asked Joyce if the quilt show was a success.  Joyce told her the fundraiser did quite well.

Mom asked Kathy how her bead booth made out.  Kathy told her that she sold quite a few pieces.  Mom told her that she was not only a beader, but a successful business woman. She also told Kathy that I was a good nurse.  She said I was a keeper.

After they all left, I called Libby, my older brothers oldest daughter and my goddaughter.  I remember having difficulty knowing what to say, but the meaning I imparted can be summed up with those words Hilda had said before.  “She may not”.

Libby said she would be there in a half hour.  She was.

We visited for a couple hours.  Mom was the most animated I had seen her since we arrived on Thursday.  I pointed out to Libby to not think Mom’s mental acuity was anything less that one hundred percent.  Her slow, hesitant manner of speaking was due to dry mouth and the fact that her energy level was way, way down. I told Libby stories about her grandmother and her dad and me.  We talked about how much Mom loved playing scrabble.  Libby said she could never beat grandma in scrabble unless she helped her.  I said, “You mean she would look at your tiles and tell you where to place them?”  Libby confirmed that.  That was my Mom; always teaching.

Mom told Libby that she had purchased a VitaMix blender from QVC. It was what was in that large box the UPS had delivered the day before. She said she would not be able to use it so it would have to be a gift. I thought how she never had any intention of ever using it herself when she ordered it.  It was always intended for someone else to enjoy.

While Libby was there, I mentioned my regret about not being more helpful as a kid.  Mom patted me on the knee as if to say, water under the bridge.  All is forgiven.

I asked Libby, who is also a pharmacist, about the list of medications that had been prescribed for mom.  She said they make sense.  I asked her about the pill that is supposed to control the drool.  She explained how the membrane inside the mouth absorbs the hyoscyamine and helps to prevent excessive drool.

Mom sat at the edge of her bed for awhile and I combed her hair.  After I had finished she said, “Beautiful. Ready to go out.” 

“Going out jazz band dancing, Ma?” I asked. She nodded.  

Libby left. Mom fell back asleep.   

Early Sunday morning, Mom was having trouble breathing and asked me to help her to sit at the edge of the bed a few times. “Why doesn’t he take me?”  It was easier for her to breathe but sapped her energy and she had to lie back down. The back of the hospital bed was elevated to make breathing easier.

At one point, she gestured.  I asked her what she wanted. She said she wanted me and hugged me.  She told me how much she loves me.  She was saying good-bye

We were awake 3 times to place the morphine sulphate solution under her tongue.  When daylight arrived, I woke her to give her morning pills.  She was having more trouble getting them down.  One kept coming up into the glass.  She drank all the Miralax in an attempt to get the last  pill down but it would not go.

I called hospice to ask about the gurgling and to see if there was anything else I could do to alleviate Mom’s discomfort.  They said they were sending a nurse.

Carrie arrived awhile later and examined mom.  She asked when the last time we had emptied the urine bag was.  It had been the previous afternoon.  Joyce and Kathy were there.  Carrie sat down with us at the dining room table and informed us that Mom had less than 72 hours to live.  There should have been much more urine output.  Her system had been shutting down.  The end will be an extended sleep. Things will continue to change. Carrie showed us how to move Mom using a slip-sheet to help her be as comfortable as possible. She said the as-needed medication log was a good idea.

Carrie explained that the gurgling sound when Mom breathes bothers us more than it does her.  She left some pink sponges on wooden sticks to use to help moisten the inside of Mom’s mouth.

We asked Carrie about visitors.  She said that would be ok but not too many people all at once.  It can be too stressful.  She said dying patients put on a good show, but it wipes them out.   They have no energy reserve.

I called my brothers to tell them what we just found out from Carrie.  I asked Mom if she had a preference of funeral directors.  She looked at me and said anyone but Amigone.  I found out later from my cousin’s wife, that Amigone has been in the news for improprieties in their crematory practices. The crematory has a long history of generating offensive odors, soot, and excessive noise into the neighborhood. She was still teaching.

I had to drive Kathy back to Syracuse and to get my own medications for the week.  I also repacked my bag then headed back to Tonawanda.  Joyce took over as caregiver in my absence. 

While I was gone, Marc, Libby and her sister Franceska stopped by to visit.  They were gone by the time I got back, but Mike and Joyce were there.  Stephanie, my daughter, had booked a flight from Boston and was due to arrive later.  I drove to the airport to pick her up when Mike left.

When we got back, I woke Mom and told her Stephanie had flown in to see her.  Her face brightened and we visited awhile.  It would be the last time Mom was able to speak. She was still able to communicate but only through gestures and nods.  Before Stephanie went to bed, Mom motioned that she wanted to sit at the edge of the bed.  I helped her up and Stephanie sat behind her, serving as a backrest.  She sat like that for close to an hour.  We helped her lie back down and went to sleep.

I woke to give Mom her dose of morphine sulphate every two hours.  This night, I decided to set my phone alarm to make sure I did not sleep though any of the times.  At 2 a.m., I heard Mom attempting to sit at the edge of the bed.  I got up and helped her.  I sat next to her, rubbing her back.  She kept moving as if she was getting out of bed to walk.  I asked her where she was going.  I asked her if she was going to run around the block.  She nodded, yes.  I told her I would get the stopwatch, and continued rubbing her back.

At 3 a.m. I awoke without my alarm.  Something was different.  Mom was breathing slower.  I remember Carrie explaining that it would be one of the changes we could expect near the end. I went over and held her hand, listening to her gurgled breath.  I went to the living room and woke Joyce.  I told her about the change.  Joyce went to the other side of the bed and held Mom’s other hand.  I said I would be right back and tried to wake Stephanie.  After walking back to Mom’s end of the house, some time went by and Stephanie did not come out.  I went back to check with her.  Both times she answered me.  I did not find out until daylight that Stephanie did not get up because she was never awake when I tried to wake her. She must have responded to me in her sleep. I found out the next day that she had no memory of me coming in to wake her. 

Joyce and I sat on either side of the hospital bed holding mom’s hands and assuring her it was ok to let go. Joyce and I stayed with mom for an hour.  When we realized that she had just begun to breathe slower and there was nothing more to it, we went back to sleep.

The next morning was Monday. Hilda stopped by to check on Mom. Before leaving, she said, “Miss Dolores looks beautiful.”

Mike and Marc were there most of the day. Mike said he had placed an ad on Craig’s List to find a home for Mom’s cats.  I asked him if he had told her.  He said he hadn’t.  I walked over and called her name. She did not respond as she had all weekend by opening her eyes.  I remembered that Carrie said this would happen and we should softly tell her what we were doing to help her.  So I just told her that Mike had put the ad for her cats and that he would make sure he found a good home for them.

All weekend, I checked Mom’s temperature by holding her hands and checking her legs.  I made certain her pajama bottoms were pulled down to cover her legs.  They would ride up and I would make sure she was not too warm or too cool.  Her hands were cool the first couple days then warmer as Monday neared. Carrie had explained how the body temperature might rise.  It was a natural process as her system handled the changes that were happening. When her forehead felt a little on the warm side, I soaked a washcloth in cool water, then placed it on her forehead.  It brought her temperature down in a few minutes.

I also patted her face with a warm washcloth and dried it for her.  I had no idea, at that time I did that, how close the end was for her, but I would like to think that it meant something to her.  It made me reflect on all she has done for me and our family during her lifetime.

I noticed, most of the morning, Mom’s eyes were open but I do not think she was awake. 

The chaplain from hospice stopped by early in the afternoon.  We gathered around Mom and prayed.  The chaplain said the most perfect words.  He told Ma that she had done a great job raising a family.  She had helped so many people as a teacher.  It was okay to go. He told her she might see a bright light.  He said she might see people who have gone before her.  He described a loving and peaceful end.

Not long after he left, the aid arrived to give Mom a sponge bath.  I went to into the living room with Mike and Marc to give Mom some privacy.  Joyce stayed to help the aide. 

It was Mom’s time and she passed. 

Every time I read the words we selected for her prayer card, I am struck with how perfect those words are.  It was as if they had been written for mom:

“God saw her getting tired. 

And a cure was not to be

So He put His arms around her

And whispered, “Come to Me.” 

With tear-filled eyes we saw her suffer

And we saw her fade away.

Although we loved her dearly,

We could not make her stay. 

A golden heart stopped beating. 

Hard-working hands to rest. 

God broke our hearts to prove to us

He only takes the best.”

There would be a few things I would add to that eulogy I mentioned when I began this.  I would add how much my Mom’s friends meant to her throughout her life.  I would have told the story about her club and how I could never understand how such a small number of ladies could create that much noise just conversing and catching up.  It was their support system and they were there for each other. They met once a month when they could.

I would mention Ester and Eleanor and Gerry and Lorraine.  I know there were others from time to time, but those were the ladies I remember from when I was a kid trying to fall asleep with that ruckus was going on in the dining room

Mention of Ester would have to include the fact that she was the only one who could give Mom a run for her money in scrabble. I would tell the story that Libby related to me that last Saturday of Mom’s life. How she could never beat her grandma unless she helped; unless she taught her how.

I would mention her volunteer work at Brighton Place Library and how much her friends in the Homemakers meant to her and her to them.

I would tell the story about a time over 30 years ago that my brother Mike remembers.  It was one of those unfortunate altercations between my dad and him when my Mom stepped in and stood up for Mike. It has stayed with him all these years.

I would end by saying how Mom remained a teacher all her life. She taught us how to have a sense of humor. She taught me how to be a caregiver.  She taught me how to care for her cats, even when it was not easy for her to talk. She taught us all about the importance of the family dinners.  She taught us how to win at scrabble. She taught us the importance of reading by example. She taught us how important it is to have a good support group.  She taught us about the importance of friends. She taught us how to enjoy life.

She taught us how to remain in control of one’s life to the end.