Dad

I didn’t think it would be hard. I thought it would be impossible.  Honestly, I don’t think I even believed in death. I mean, sure, for other people, but not for my people. Does that sound impossibly self centered? Sure. But it’s true. Other people lost people but my world stayed intact.  9/11 didn’t take mom. Breast cancer didn’t take mom.  Lung cancer didn’t take mom.  Pernicious  anemia didn’t take dad.  Stomach cancer didn’t take dad.  They were invincible.  Now, I know somewhere inside I felt the inevitable. Every time I left my parents I’d always try to take a picture with them in case it was the last.  I tried to call every day just to say hi, even though my commute was only 12 minutes.  Speed calls, but calls nonetheless.  

Dad and I talked about so much on those speed calls.  Politics, Hayden and Kaya, Brian, life. Often we didn’t talk about anything terribly exciting, we just talked.  Mostly I talked, because ever since his retirement and Covid he stayed at home reading.  So, he’d tell me about the latest Bob Woodward book he was finishing and then I’d fill him in on Hayden’s ballet training, Kaya’s new school, Brian’s never ending deck project and the ins and outs of my life.  I’d talk.  He’d listen.  But he’d listen without judgment. When the kids were little and my world was filled with too little sleep and too little money I could call him to vent because I knew he would approach every challenge with love 

Every call began with “Hey Pooh” (his childhood nickname for me) and every call ended with “Call me when you get a chance. I love you.”  

And now, here I am thinking back to these past few weeks and piecing together how much has changed so quickly.  Three weeks ago I was terrified at the mere thought of being with someone when they died.  I’d see those Facebook questionnaires that would ask questions like “have you seen anyone die” and I’d stop and ponder the absolute impossibility of that.  How could anyone, how could I, have the strength to sit that close to death?  There was simply no way.  But, that was then, this is now.   

I guess I should go back and look at how it is that we got here.  I’m sure that it’s both entirely unique and the most timeless of all realities.  It started, as so many stories do, with a phone call. 

Friday October 1

I called dad on a Friday night.  He had been on his own “batching it” as he’d say, for two weeks.  He was doing well, reading. He had made it through a whole lot of Bob Woodward and was weaving his way through the seemingly endless litany of post-Trump era books.  But, when I talked to him that Friday, he sounded tired.  He was in his favorite red chair with his dog, Montana, at his side. I told him I’d be coming to see him on Sunday and he said, “That would be great. Can you bring me some Ensure when you come?” I said sure and asked him if everything was okay. “I’m just feeling really tired and I think my blood sugar is low, ” he said.  Low blood sugar almost killed him a few years ago so I knew it was, as dad would say, “go time”.  I called his best friend Darren, the Chief of Police in his town, and I asked him to swing by to check in on dad.  When I told dad he said, “That sounds fine, just don’t tell Bonnie right now. I don’t want her to worry”.  I understood. Bonnie was in California visiting her family for the first time in 2 years since the pandemic had hit.  He wanted her to enjoy her three week vacation and not worry about him. I agreed but I told him that Darren would likely call the paramedics to check on him and he thought that was fine.  That’s when I knew he was a little concerned.  That’s not the kind of thing he’d easily agree to.  

Darren called while I was on the road down there.  He said that things seemed bad. 

“It doesn’t look like your father has eaten in a week”, he said.  This may or may not have been hyperbole.  When dad got stomach cancer five years ago he had to have his entire stomach removed.  In its place was a small pouch of small intestine that needed to be trained to work as a stomach (most stomach cancer survivors make it through the surgery only to die later because their body can’t adjust to the new “stomach”.  Dad’s body had taken on the challenge like a champ and five years down the road he could eat most things.  The problem was, he didn’t feel hunger. So, with nobody there to remind him to eat, the likelihood that he would simply not eat for a week wasn’t that far out of the realm of possibility.  Darren also said that it didn’t look like Montana had eaten in about the same amount of time. Montana was 14 years old and throughout his life he would only eat his dinner when someone (dad) stood in the kitchen next to his dish with him.  So, if dad wasn’t eating he was probably growing too weak to go to the kitchen to stand next to Montana, so Montana was probably not eating either.  The two of them had likely gone a period of time (days? longer?) without eating.  

When I got there the kitchen was filled with clearly marked bags filled with recycling that needed to go out.  Dad didn’t have the strength to take the bags out himself.  There were dishes in the sink that had been there for a long time.  Dad looked at me and said, “I’m ashamed about how this place looks, but I didn’t have the strength.”  And I knew that both were true and my heart ached for him because they were both so far out of his control.  The shame, the feeling of weakness on every level.  The reality that, in that moment at least, he couldn’t take care of himself, was profound.  And in that moment, something changed.  He didn’t stop being my strong rock of a dad, that could never happen, but our roles changed.  For the first time in my life he needed me as much, more maybe, than I needed him. 

I sat with him in his bedroom, him in his favorite red recliner that I had helped to carry into his room several years ago, and me on his desk chair tucked between the side of his bed and his large desk by the windows.  We sat and we talked and in that moment I realized that for a while now (days? A week?) he had been telling me what I wanted to hear whenever I called.  He didn’t want to worry me, he didn’t want to be a burden, so he told me the things he knew I wouldn’t follow up on.  He said he had been reading.  That was true.  But he didn’t tell me he was only reading, not eating, not moving from his chair except to use the bathroom.  He told me he was fine.  He didn’t tell me he hadn’t taken any of his life saving medication for three days (we only discovered that when we went to put his things together and we realized that the last day in his “day of the week” pillbox that was empty was Monday.  This was Friday.  Four days with no medication.  Did that equal four days without eating?  No way to know and he couldn’t tell me.  All we knew was that paramedics had come and gone and they had found everything normal, aside from the fact that he was skin and bones.    This man who for so many years had fought with his weight until his stomach surgery from which point he fought to maintain what little weight he could put on.  Now he was skin and bones.  Quite literally.  

“I think you should come to stay with me until Bonnie gets back from California,” I told him.  She still had a full week left of her vacation and looking around at his home, at him, I knew there was no way he could make it another week on his own.

“I really don’t want to be a burden or put you out”, he told me.  

I assured him that truthfully he’d be doing us a favor.  He had just spent a week with Kaya when she went down to see him the first week in September, but Hayden hadn’t spent time with him in a long time.  Her ballet training kept her busy all the time and it was hard to find time for her to visit.  But, Papa was her person.  He was a quiet observer in the same way she was and the two of them shared a bond.  Her Homecoming dance was the next night and I knew she’d love it if he could be there to see her. 

I spent the night on the couch unable to sleep.  I texted a coworker and we chatted into the night.  It was the first time I put into words my thought, my fear.  I felt somewhere deep inside that dad wasn’t going to make it to the other side of whatever this was.  Somewhere my soul knew that night that he was going to die.

Saturday October 2

In the morning I picked up and helped dad pack his bag for the trip to my house.  We forgot some of the essentials (his bag with his blood sugar test kit and some other items) but we remembered other important things (his medications, and everything he needed for Montana). It was hard for him to get to the car but with time and some effort he made it into the front seat.  He loved the drive.  It was a beautiful fall day and he kept saying how beautiful the view was.  I realized that since Covid had started he hadn’t left his house much at all.  A drive to New Hampshire on a beautiful fall day was a gift. 

That night he sat on the couch while Hayden got ready for her homecoming dance.  He loved seeing her dressed up, so adult, so beautiful.  They chatted for a minute and then she was off with her friends.  

“Thank you for having me here,” he told me.  “I’m loving every minute of this.” 

Sunday October 3

We had plans to go to the Deerfield Fair where both Hayden and I had artwork in the show.  I didn’t want to leave dad for too long and Hayden had Nutcracker rehearsal in the afternoon so we went early.  I had asked Heidi to come by to walk Montana because dad was too weak and even at fourteen years old if Montana saw a squirrel or something he’d take off like a shot and I didn’t want to risk that with dad.  Heidi came by but she said when she called out to dad he didn’t answer and she didn’t want to walk in on him in the bedroom so she didn’t stay. 

When we got home from the fair we showed dad the awards we had won (first place for Hayden’s ink drawing and for a black and white photograph of her sister, and first place for my photographs of Hayden dancing). 

Dad had a harder time getting upstairs but he did it.  He sat on the couch and we watched videos of the girls dance/aerial recitals from this past spring. He hadn’t been able to see them perform since before Covid and I wanted him to share that memory with them.  I knew that I was working to create memories for the girls with their Papa, and I’m pretty sure I knew why.  

There were some moments of confusion on Sunday, times when he wasn’t sure exactly where he was and I had to remind him, and I realized then that I would need to stay home on Monday to make sure that he was okay.   

 Monday October 4

I dropped Kaya off at school and when I came home dad was sitting on the landing by the front door.  

“I’m ready to go,” he told me.  I reminded him that he was staying with me for a while.

“But, my condo is right next door. I thought I could just walk over there, but I’m just too weak.” 

I got him back downstairs into the bedroom and I sat with him.  

“What happened to my red chair?” He asked me.  I reminded him that he was in New Hampshire and his red chair was back at his house.

“Where are we?” He asked again.  Again I told him.  He seemed surprised each time.  He wanted to know when I was going back to my house.  

“I’m home.  This is my home,” I told him.

He nodded. “I’m glad you’re staying here,” he said.  

He slept a bit, but most of the time he was awake.  He was worried about where his keys were. (Back at his house).  Where his truck was (back at his house) and where his cane was (by the door).  He was worried that his watch wasn’t working so I called on a friend who brought an extra Fitbit charger for him to use.  

At one point dad looked ahead of him and said, “Do you see that?” I asked what he was looking at.  He said, “Those gold worms.  They’re moving.” 

Shit.

Darren texted me to check in on dad.  I texted back to let him know that dad was hallucinating gold worms.

“You really don’t see them?” He asked me again.

“I really don’t dad, but that’s okay.”  

He shook his head.  “That’s really concerning.”

Yup.

“You really don’t see them?”

“No dad. I really don’t.”

I followed his gaze.  And there, on top of the armoir was a maroon hat box with a gold design that looked a hell of a lot like little gold worms.  

So, basically I gaslighted dad.  We both felt better knowing that there were actually gold “worms” and at least for that moment he was lucid. 

By that night though dad was confused again and now he was agitated.  He didn’t know where he was, he wasn’t sure who we were, and he wanted to go home. I called Bonnie and she told me to give him some orange juice to help with his blood sugar and to call the paramedics.  

By the time they came dad was lucid again and they weren’t really sure why they had been called.  He knew where he was, he knew the month and the year (not the date, but the guy was retired, there was no reason for him to know the date).  He talked to the paramedics about his time as an EMT and about his years working with EMTs and police when he was a judge.  They called him “judge” and they treated him with dignity. In the end they gave him a clean bill of health (normal blood sugar, decent heart rate) and they left.

I spent the rest of the night worried that Kaya would go downstairs in the morning to walk Montana to find that he had died in the night. 

Tuesday October 5

In the morning when Kaya went down to walk the dog dad was looking for his car keys.  He was very agitated and digging through everything. His keys were at his house since I had driven him to New Hampshire with me.  He didn’t remember that though.  He just knew that he needed his keys so he could leave.  Brain and Kaya got him calmed down and then I spent the day with him, sitting by his side.  

He got tired of being in that room and he kept trying to leave so I finally got him into the family room downstairs where he could sit comfortably and out of bed.  I talked to Bonnie and she called their doctor who recommended that he be taken to the ER to run a battery of tests to try to get to the bottom of what was going on.   

Before we left for the ER I asked Hayden if she would run her classical and contemporary dances for the Youth America Grand Prix for him.  He had been wanting to see her dance and this felt like the right time.  She danced and he watched, glowing with pride. Then he talked to Kaya about Montana and she agreed to watch him while dad went to the hospital. When we got him out to the car I made sure the girls both kissed him goodbye. This would be the first of many “goodbyes” over the next week. 

We got to the ER at around 4pm and we were told that the wait to be seen would be around two hours.  We spent that time people watching, so much to see in an ER.  Bloody heads, hacking coughs, a whole spectrum of the human condition.  Once they got him and and they started drawing blood we had about four more hours to wait for results.  But, now we were in a room where we could just sit and relax. We both knew, even before the doctor came back into the room.  We must have just felt it.  I asked him everything.  

We talked about flying – I asked him about his most frightening moment and he hold me it was when he was working as an instructor and he was showing a student how to get out of a stall.  They ended up free falling toward earth until he pulled out at the last minute. 

“Didn’t that make you afraid to fly?” I asked him. 

“No. You can’t instruct if you’re afraid.  You can’t do anything if you’re driven by fear.  You just have to put it all out there and trust.  That’s what I did. That’s what I do.”

His favorite line, “You’d better do something, that thing ain’t gonna land sideways” said in response to a student who froze at the wrong moment.  It became his mantra and the family saying for so many situations…”It ain’t gonna land sideways” is now family shorthand for “You’d better figure something out, and fast!” 

We talked about his time in the seminary. “I was there for two years and I loved it.  But I realized that it wasn’t my true calling.  I was put on this earth for something different.  After seminary I went to UCONN law because my father said ‘if you don’t know what you want to do, study law’.  So I did, and I loved it.  After UCONN the war in Vietnam was in swing and so I joined the Reserves.  I never got sent over to fight anywhere, but I did my time, two weeks a year and I loved it.  I learned to type in the Army and I became a captain.” 

Favorite job – Practicing law. All of it.  “I started as a defense attorney and then I was a prosecutor.  I worked in a large fim, a small firm and then for myself.  I loved all of it. The hardest part was termination of parental rights, no question. You’re taking a child away from their parents forever, and that’s life changing.  You can’t take any of that lightly.”  

Advice from practicing law “Be kind.  Remember that these are people’s lives and the way you represent them as a lawyer, and the way you listen to evidence as a judge all matters.” 

Most interesting famous person he met – “Probably JFK.  My father was his teacher and he came to speak at Canterbury once.  My father took me over to meet him.  He was a nice person,nice family.  Not a great student, but a good guy. 

Piano lessons – “My father played the piano and he wanted me to learn to play but he didn’t think it was a good idea for parents to teach their own kids so he hired a teacher for me to work with.  He taught me for about ten years.  Gayest man I ever met in my life.  Great guy. Taught me everything I know.” 

After several hours the doctor came back with the test results.  A brain bleed; no idea where from, he may have fallen or somehow hit his head when he was alone. We’ll never know,  A blood infection; maybe from an infected tooth, we’ll never really know.  Heart failure on both sides of his heart.  His heart was functioning at 40% back in July.  Now it was at 14%.  Any one of those things on its own could be fatal.  All together there was simply no chance.  But, they wanted him somewhere with a strong neurology unit and that meant Portland, Maine or Boston.    

At 11pm the call came through.  There was a bed available at the CICU in Portland, Maine.  At 11pm they made the call to transfer him.  

When the paramedics came in they told me to put anything I wanted him to have with him in a bag. I told them I’d be following him up and I could bring his stuff.  

“Maine Medical Center doesn’t allow visitors because of Covid,” they told me.  

I was on auto pilot at that point and I didn’t really process what they were saying.  Not until after they rolled him away that is.

I found myself standing out in the parking lot a few minutes later. My dad was gone. Off to Portland, Maine.  And that’s when it hit me.  No visitors. He would be confused and alone. Or lucid and alone.  He would be alone.  

I ran back into the ER and up to the main desk. At this point I was sobbing

“They just took my father,  Michael Mack. You need to get him back!  They can’t take him! They don’t allow visitors there and I need him somewhere where I can see him! You have to get him back!” 

They called dispatch but he was already gone. I was sobbing.  They told me to call Maine Medical Center.  

“Just give them a call. You might not have gotten all the information.” 

I called Maine and they said that in the ER no visitors are allowed but that once he’s in a room they allow one visit by one visitor per day.

“So, I can see my dad?”

“Yes, you can see your dad.  Just give him a chance to get settled in.” 

I went home and at 1am I called the hospital.  He was being moved to a room and they let me talk to him. He sounded so weak and so tired, but just hearing his voice and knowing that I’d be able to see him made it possible for me to sleep. And knowing that he was somewhere safe made such a difference. I didn’t have to worry that he’d die downstairs alone.   

Wednesday October 6

I drove up to Maine Medical Center at 7am. When I got there they took my photo, gave me a sticker and told me that if I left for any reason I would not be allowed back in.  The cafeteria was closed and there was no food available aside from a vending machine. I could visit any time between 8am and 8pm but once I left, that was it.  

No problem.  I was in it for the long haul.  

His room in the ICU was beautiful. Floor to ceiling windows with a view of downtown Portalnd Maine. People pay good money to be there in the fall and here we were.  Dad was pretty lucid most of that day but he had no real memory of getting there.

“How did I end up here?” he asked me. I told him about the series of events that led us to Portland. 

“So, there wasn’t an accident?” he asked. I assured him that no, there hadn’t been an accident.

“Thank God. I didn’t know how I got here and I just kept thinking what if I had been in a car and something happened.  What if I had hurt someone?” 

He looked so afraid at the mere thought of that and I understood completely.  A few years ago he had visited for his birthday.  That afternoon we went to a restaurant on the coast in New Hampshire and on the ride home something had happened.  Dad started swerving all over the road and he wasn’t lucid at all. None of us knew what to do so we let him keep driving while we tried to keep ourselves, and him safe.  We made it home by some miracle and then he sat down on the couch and became unresponsive.  We called 911 and they got him into the ambulance. I left in my car so that I could be at the ER when he arrived, but about five minutes down the road I realized that the ambulance hadn’t followed me.  I drove back to the house and the ambulance was still there by the driveway and the paramedics were hard at work on my dad. All of a sudden his face appeared in the back window of the ambulance and he waved to me.  He was okay.  His blood sugar had dropped as a result of the stomach surgery but once they got it under control he was okay.  They kept him in the hospital for a few days but, for that moment at least, the storm had passed.

But, that memory must have lodged somewhere, or that fear anyway, because he kept verifying that he hadn’t been driving when all of this happened and everyone was safe. 

“Everyone is safe dad.  We’re all okay.”

“Thank God.”

Thursday October 7

Still just me in the ICU.  Bonnie was still in California, unable to change her ticket.  But, with only one visitor allowed per day I was okay with that since it made it a bit easier not to have to juggle and at this point I had been on this journey with him for almost a week. I wasn’t sure I was ready to walk out the door quite yet for as much as I wanted Bonnie there.  I wanted us both there and since that wasn’t possible I was more than willing to be his +1 for the time being.  

Dad went back and forth between being lucid and not. When he woke up from a deep sleep he woke up confused.  At one point he decided to invade Amsterdam

“We can take Amsterdam. All those canals, we can take them.”  

Okay, sure.  I mean, in fairness he probably could take Amsterdam, even in his current condition. 

He spent some time complaining about all the Amazon boxes, “So many boxes.  What are we going to do with all of them?” In fairness coming out of a year of Covid lockdown that felt pretty damn lucid.  We all had too many Amazon boxes, to be sure.  

Dad hadn’t really eaten real food since they took away his stomach seven years ago. He lived on Ensure.  With the cafeteria closed and no way to get food other than to bring it in the morning or raid the vending machines the patient meals were absolutely the way to go. A lobster roll with a small ceasar salad and an Ensure on the side worked well for us. Every time his meal came dad would say, “I can’t believe they keep giving me all this food. I can’t eat all of this!” and I’d slyly tell him my nefarious plan.  He loved it.  That is, until we discovered that on his low sodium heart healthy diet my lobster roll and salad ate up his sodium allotment for the day leaving him no room for a second Ensure before bed.  Oops. Luckily the nurses had one for him.  It was mostly for show though, he wasn’t really eating at that point.  

Friday October 8

Wednesday and Thursday nurse had been sweet and funny.  But she didn’t work on Friday.  Friday nurse?  She clearly thought I was a distraction and that I shouldn’t be there. She wanted him to get his rest. I resisted the urge to remind her that he was dying and would have all the rest he could handle in short order. For the moment what he really needed was some distraction and company.  

Friday nurse kept the place an ice box and she took away the extra pillow and blanket so I couldn’t’ get comfortable.  Friday  nurse also knew the drill about the “meal plan” and she insisted on ordering his food for him.  Ensure only.  So, I sat curled up on a chair on Friay while dad slept.  I checked my email.  Big mistake. My seventh period students were being assholes. I took the opportunity to call parents from the ICU, telling them quite pointedly that I was calling from my father’s deathbed to let them know that their child was being disrespectful to my sub.  It had the intended effect.  And, when dad woke up he loved it.  It was exactly the kind of thing he would have done. The equivalent of him pushing his glasses down low on his nose in court and looking over them to make a point.  

Friday also brought a move out of the ICU and into the CICU on the 9th floor.  Better view, smaller windows.  It felt like a step in the right direction that he was being moved out of the ICU even though we knew that really it didn’t mean anything particularly positive.  

Friday was also the last day I would be there before Bonnie came.  After he was moved to the CICU I asked the nurses if there was any flexibility to the “one visit by one person per day” policy. I explained that my dad was used to having me there and while he was becoming more lucid with the medication for the blood infection he was still confused a lot of the time and I knew if I wasn’t there he’d ask about me.

“He’s not going to understand why I’m not there,” I told the nurses at the desk.

She nodded. “I know, this is hard,” she said.  And I saw it on their faces.  The accumulated heartbreak of a year and a half of Covid on their exhausted faces.  I stood there and cried at the nurse’s station and they did what they could to comfort me. It was around then that we got the news that I would be allowed to break the “one person rule” at 2pm the following day when Bonnie and I met with dad’s doctor to go over his “treatment plan”.  We all knew at that point that there really wasn’t any treatment in the plan, per say, but the meeting was important and it would allow me one more day in the room with my dad, even if only for a brief period before the meeting.  

Saturday October 9

I was allowed to break the “one visitor”.  I got to the hospital at 2pm and Bonnie was in the room with dad.  He was so happy to have her there and I could feel the shift in his mood. He loved having me there, no question, but she brought a different kind of comfort.  She was his partner and I would always be his child.  We were both vital to him but in different ways and for different reasons.  

The doctor, a tiny Asian woman with impeccable fashion sense whom dad adored because, like him, she was a Holy Cross graduate, led us to a small, dimly lit room.  The mood lighting didn’t disguise the pot of coffee in the corner that had been left on for so long that the layer of coffee was seared to the inside of the pot.  She started by saying, “I didn’t go into medicine for these conversations. I went into medicine to fix people. To help”. I became acutely conscious of how hard this was for her.  She thought she was breaking news to us. But we had known since Tuesday.  Maybe even before.  I think I knew the night I went down to dad’s house.  She was saying the words but all I could think about was how much I wanted to comfort her, to tell her that it was okay.  We knew.  

She asked what we wanted to do going forward.  We told her palliative care.  This was the code word apparently, the magic word that changed the rules. Now Bonnie and I could each see him every day as long as we alternated so that we weren’t in the room at the same time.  He had a roommate in the CICU, a man who had gone through quadruple bypass surgery several months before and now it was clear that it had failed. He was an okay roommate (and dad had the window side of the room). As for dad they would keep giving him antibiotics for his blood infection because there were concerns that without it he would become disoriented again (as it was he had told Bonnie just the day before that there was a large gorilla on the church outside of his room).  We wanted palliative care for dad, but we also wanted dad to be as much himself as possible

On Saturday night Bonnie stayed with us.  We ate tacos from Taco Bell and drank some wine.  We talked.  Bonnie was concerned because dad was wearing a gold chain with a crucifix rather than the medal he always wore.  She couldn’t figure out why he had taken off his favorite medal that had been given to him in favor of a cheap fake gold crucifix.  

“Why was he buying a crucifix on Amazon?” Bonnie asked no one in particular. “Did he know something?” 

The answer now, in retrospect is, probably.  Likely.  Brain found dad’s medal on the floor next to his beloved red chair.  All he told Bonnie was that he saw the crucifix and he liked it.  But what prompted him to search crucifixes on Amazon in the first place?

Oh, and speaking of Brian, at this point he had spent days down in Connecticut at dad and Bonnie’s house cleaning, taking our the trash and recycling, cleaning out the refrigerator, scrubbing the bathrooms all in anticipation of dad coming home.  We made arrangements for Monica, Bonnie’s daughter-in-law who is a nurse to come out to stay to take care of dad when he came home.  We all knew he was coming home to pass away there, but it’s what he wanted and we wanted to respect that.  I talked to Kev about flying in earlier.  He was scheduled to come the following Friday, the idea being that he’d get there once dad was comfortably at home.  Dad was planning to be discharged on Wednesday and we figured that would give him some time after dad got settled in.  But, even then the plans felt nebulous at best.  

Sunday October 10

Sunday was Saturday all over again.  Bonnie and I switched out our visits, sort of. But most of the time we stayed in the room together.  We shared lobster rolls while dad contemplated his Ensures and thoroughly enjoyed his ice water.  “Better than scotch.” “Like scotch on the rocks, hold the scotch” “This is incredible.” Maine ice water.  Best ever.  

The TV in the small “waiting area” was set to FX and it played non-stop blood.  American Crime Story, vampire murder shows, you name it.  If there was blood and screaming, it was on. I finally figured out how to turn down the volume but the visual was still there.  The only reprieve was when FX broke from the norm to play all of the various versions of “The Hangover” in succession. It was a welcome reprieve.  

Monday October 11

I spent a lot of time looking at the helipad from dad’s window.  Watching the methodical way that the paramedics got stretchers out on that small pad in the sky.  No urgency. I mean, I’m sure there was urgency, all kinds of urgency, but in those moments they seemed so calm.  So much of hospital life seems to revolve around seeming calm when things aren’t.  During this time there was a woman down the hall screaming non stop.  She was in agony.  I was confused.  The Cardiac ICU is for heart issues. How could you scream that intently with a heart problem and not give yourself a heart attack? So many questions.  

Tuesday October 12

By now I had been out of work for too long.  I had the sick days so that wasn’t an issue, but it had been forever since I had been at work.  I needed to give it a try. It felt so good to feel normal for a moment. To be there with my students living normal life like a normal person.  Until 1:45pm when Bonnie called to tell me that I need to get the kids and get to the hospital. Dad was dying and we needed to be there with him. 

I left school in a panic, unsure if anyone was there to cover my last class of the day. Hayden had the day off from school so I ran home and got her and then ran to Kaya’s school to pick her up.  We stopped at McDonalds on the way because Kaya was starving and then we pulled out of the drive in not realizing that they had forgotten to give us Kaya’s drink.  She exploded in anger. I tried to remember how scary this all must be for her but in the end I yelled at her.  I felt terrible, but I just needed everyone to be somehow on the same page in the same place. I couldn’t’ think about a missing Root Beer when I was bringing my daughters to say goodbye to their papa for what I thought would be the last time.  

When we got there I ushered Kaya to the waiting area and I brought Hayden in to see dad. (At this point they had lifted the “only two people” rule.  The closer one gets to death the less others seem to worry about Covid protocols).  Dad took a moment to talk to Hayden.  He told her how proud he was of her and her dancing. How proud he was of the person she was growing into.  He told her to take care of Kaya and to watch out for her, that she was the big sister and Kaya would always look up to her.  He told her that he loved her and that he was okay.  He wasn’t in any pain and he was okay.  

Then dad talked to Kaya. I missed some of it because I was helping Hayden transition out of the room but when I came back in he was talking to her about college and how he hoped she would pursue all of her goals and never lose sight of how smart she is.  He told her that he loved her with all of his heart and that he was okay. He was at peace and he was okay. 

Then both girls came into the room and he turned to Kaya and said something about her being a dancer.  I saw it on Kaya’s face.  That sadness that her Papa had the wrong kid. Kaya was never a dancer.  That was Hayden. In that moment I saw Kaya’s face fall and I knew that feeling.  It was how I felt the previous Sunday when I knew he didn’t know where he was or probably who I was. That feeling of not wanting to correct him but wanting so badly for him to know who you were and to remember everything, even for just one more moment.  

Then, Dad called Kevin and told him that he expected to be “walking out in the snow somewhere” by the next day.  Kevin understood that he was saying goodbye.  

That night at 8pm when it was time for Bonnie to leave, she couldn’t. They said the only way she could stay was if they moved dad to “Comfort care”. No more antibiotics for the blood infection.  No more attempts to make things better.  Just comfort as he said goodbye.  She made the call (rightly) and they moved his roommate out.  Dad now had the room to himself and anyone could be there any time.  Bonnie stayed with him that night and every night until he died. 

Wednesday October 13

I got up early to head to the hospital. The plan was to drop kaya off at school and then go from there.  Kaya was on the couch visibly upset.

“He thought I was a dancer,” she told me. “He didn’t even know who I was.”  I tried to tell her that up until that moment he knew he but she continued,  “He kept talking about college though, about the future.  I don’t care about any of that right now. He said all the wrong things.”  

He said all the wrong things.  

I couldn’t let that be her last memory of her Papa.  I couldn’t’ let that erase all of their moments, their laughter and their shared experiences.  I didn’t know how he’d be, if he’d be lucid or lost, but for her sake I needed to take the chance.

“Go ahead and get dressed,” I told her, “Let’s go see Papa”.

We got there around 8:30am and dad was totally lucid. He said all the right things to Kaya.  They laughed a bit and she told him stories about the dogs including the new little Cavalier King Charles that Bonnie brought home from California who was now resting comfortably in our home and Kaya had all but adopted.  Kaya showed her Papa photos of her walking the two dogs and he smiled.  Kaya settled in at her Papa’s side. That’s where she stayed for a full week until he took his final breath. From that day on, from that moment on, she made it clear that she wasn’t leaving his side.  There would be no debate or discussion on that point as far as she was concerned.  That was her Papa and she would see this journey through to the end.

The plan had always been for dad to go home on Wednesday.  Wednesday morning came and it became clear that this could no longer be the plan.  There was no way dad would survive a 4 hour car ride back to Connecticut.  I called the ambulance to cancel the ride. Then I called Kev.  No answer. It was only 5:30am his time. I texted him

“Try to change your flight so you can come in today”. I texted.  I gave no context and it was only later that I found out that Kevin assumed that dad had passed away. In my mind my text meant he was alive, had he died there would be no urgency, but Kevin didn’t know that.  He got the message, found a flight, packed his bags and took off.  

Dad was so weak.  I worried that dad would die before Kev could make it. I found myself checking my phone obsessively, as if by checking it I could make time pass differently.  Slower for dad, to slow down the process, faster for Kev to get him there before it was too late.

At one point a priest came in to give Dad the Last Rites.  He called it the anointing of the sick, but it was the same.  His tone was very fire and brimstone, very much about fearing God and being ready to meet him.  Different from the next two times dad was given that sacrament (yes, he had Last Rites three times.Probably not a record, but I’m guessing it’s more than the average person).  What I remember most was that when the priest was done he did a very dramatic holy water fling onto dad and the rest of us. He splashed my face with holy water. I felt like wiping it off would send the wrong message somehow so I left it there, dripping down my face as we held hands and said the Lord’s Prayer.  

Having the priest there brought dad comfort.  A minister also came in with a rosary for him. It was purple plastic, but it gave him comfort while he was there. Sometimes he fidgeted with it, sometimes it sat at his bedside.  It brought him comfort and it was a reminder to all of us that dad had faith, right up to the very end.   

That night there was nothing I could do to speed up time so I went home to teach my online class from 5:30 – 7:00.  Then Heidi took Hayden to dance while I took a nap.  Kaya insisted on coming back to the hospital with me at 9pm.  Hayden wanted her last memory of Papa to be the day before when they talked.  Kaya needed more.  

We got to the hospital at around 11pm.  At this point the hospital staff had entirely given up on any chance that we’d follow any of the Covid rules.  They showed us to a special “Family room”. This one also had burned coffee on the base of the coffee maker and dim “mood lighting” but at least there was no tv playing FX Blood soaked tv shows. Kaya and I poked our heads into dad’s room and when we saw he and Bonnie both asleep we moved to the family waiting room for a while while we waited for the rest of the crew to come. 

Kev’s flight came into Logan at midnight.  Monica’s flight came into Providence at 10pm.  Brian had been at dad’s house for days cleaning. He left dad’s, drove to Providence to get Monica, drove to Logan to get Kev and then headed up to the hospital in Portland.  

At 2am Brian, Kevin and Monica showed up and we all headed into dad’s room.  Dad, Bonnie, Kaya, Brian, Kevin, Monica and myself.  Seven of us there in the hospital room at 2am visiting with dad.  He was totally lucid and so incredibly happy to have everyone there with him.  He recorded a message for Lorrie and he Facetimed with Hayden. His whole family was there with him that night in one form or another.  We all talked for hours.  He went around and spoke to each of us individually.  I asked him why I was Pooh Bear and he said that Winnie the Pooh was independent and had a spiritual center that he always respected, just like me.  He told Kevin how proud he is of everything he has done with his life and everything he is doing.  He told Hayden how much he loves seeing her dance and how he will alway be there to watch her, even once he’s gone, he’ll never miss a performance and she’ll feel him there with her (he also told her that he wished she could be there with him in that moment, but that he understood that she was busy).  He told Kaya how much he loves her and not to worry about him.  That she’s incredible with animals and she’s a special, loving soul.  

To me he said, “You need to write the story. Write it down. There’s a story in this somewhere.” He has said that about so many things, teaching in a pandemic, raising children, every moment of my life that I have ever shared with him he says, “Write that down.  There’s a story in there somewhere”.  

I am dad. I’m writing it all.

Then he looked at each of us. “I want all of you to take a moment each and every day to thank God for the amazing gift that each day is.” He told us that he was fully at peace.  He had a great life, the best, and he had the greatest family.  He was surrounded by love and he was certain that God was there calling him home.  He was ready. Dad took our hands and we took his.  We held hands and said the Lord’s Prayer with him.  When we were done he closed his eyes. 

I couldn’t stop thinking about what he said to Hayden and that he thought she was too busy to be there.  

“Dad,” I said, “I need you to know that Hayden wasn’t too busy to be here.  She had such a great conversation with you the other day that that was the memory she wanted to hold close.”  

He smiled, “Ah, that’s my girl,” he said. “Tell her I love her so very much and she’s always here with me no matter what.  Always.” 

Then he closed his eyes again and we continued to hold his hand there in the dim light of the hospital room.  

 We kept holding hands.  It was so late and I was so tired.  My head went down on the bed and I lay there with my eyes closed, still holding hands.  Dad’s chest kept rising and falling.  We kept holding hands. After a while my arm started to hurt. 

 I needed to shift. 

 It got awkward.  

 “You know, you don’t need to die now if you’re not ready” I finally said. 

We all let go subtly and went back to our positions in the room. I curled back into my chair, Kaya made a nest on the floor, Kevin found a space on the floor,  Monica found a chair and Bonnie found a spot in the one chair that sort of reclined a bit.  And then we all closed our eyes for a few minutes until the morning.  

Dark Thursday October 14

None of us really slept.  The chairs, the floor, teh window sill, nothing was conducive to rest but none of us had it in us to leave.  Dad’s plan had been to drift away in the night.  When he woke up on Thursday stil alive andl in the hospital, at first he felt okay about it.  “I guess God wasn’t ready to call me home last night after all.  Maybe I’m still meant to be here.”  There was a moment, a brief moment when we all imagined dad going back home again.  Not forever but for a few days so that he could pass away in his red chair with his dog at his side, the way he had wanted to.  

Kevin and I went out to McDonalds to get food for everyone.  

“Last night, that hand holding and waiting for dad to take his last breath…that got awkward,” I said.

Kev nodded.  “I guess it doesn’t really work that way, hu?”

“I guess not.”

Dad had a great notion that he would take his final breath with all of us there holding his hands and he would drift off to God in the night.  There’s something so profoundly cinematic about that, but life doesn’t really work that way most of the time I don’t think.  

But, him still being there gave me a chance to take care of a few loose ends.  I wanted Hayden to see Papa one more time if she was willing.  He had recorded a beautiful message for her the night before but since it was peppered with “I wish you could be here” I knew I’d need to delete it if she didn’t’ see him one more time. I didn’t ever want her to think that her Papa wanted to see her and she wasn’t there for him.  I needed, for me, for her to see him one more time.  

Hayden didn’t feel that need but she understood that it was important to Papa, and to me, so Brian went down and got her and brought her to the hospital.

Dad was lucid and he talked to her some more.  He told her again how much he loved her and she kissed him on the head.  She stayed there in the room with all of us (now there were 8 in that small room) telling stories and talking until dad got tired and Hayden went out to the Weird Waiting Area (the one with nonstop FX blood shows) and stayed there until her Uncle Kevin came to get she and Kaya.  He took them down to the beach to walk his dog; it was a much needed break from the confines of that room. Then Hayden went home with Brian and Kaya rebuilt her perch on the windowsill in dad’s room.  

At one point the doctor came in and said that dad would need to be moved either to another part of the hospital for “comfort care”or to a hospice facility.  Hospice hadn’t been an option while he was on medication but once he was off the meds he was a candidate.  There was a wait list for hospice but we asked that he be placed on the list.   

By late afternoon dad had had it with this whole, “still being alive” thing.  The novelty of being given one more day had worn off, hard, and he was sick of it all.  He didn’t want the morphine they were offerening, “They want to drug me up so I can’t think and then have me die here.  They don’t want to see me get out of this place.” He would look at the chart on the wall and talk about how it was all a conspiracy, “they’re all part of the racket,” he’d repeat over and over. “It’s a racket and I want no part of it.” 

Without morphine he was in pain and the trauma bed that he had been in for over a week left his back screaming in pain.  We all sat by his side while he cried out, “I don’t know how to do this.  God, just show me how to do this.” I tried to walk him through the visualizations that Brian had used with me when I did hypnobirthing for the girls, but I didn’t know what to say.  “Go toward the light” is cliche, “God is waiting” is kind of weird and “You’re okay” is a blatant lie.  I just kept saying, “We’re all here and we love you.  You’re safe and we’re all here with you.”  That seemed to help a bit but not nearly enough.  

Another priest was called in.  More Last Rites. He stood next to dad. “You’re one of them,” dad said.  “You’re part of that establishment and I want none of it.  You don’t want me to go home and i want to go home.  I’m going home.” The priest explained that he wasn’t part of the hospital, they just called him in when he was needed.  Dad rolled his eyes as best as one could in his condition. FInally I told dad that if, in the morning, he still wanted to go home we’d get the ambulance to transport him to the house. The concern was that he wouldn’t survive the ride and we didn’t want him to die alone in the ambulance.

“I don’t care about that, I just want to get the hell out of here,” he said. 

The rest of the day we tried to keep dad as comfortable and as distracted as possible.  We played the Light Classical station on the tv.  But it played all the wrong things.  Mendlesons’ Wedding March, some creepy dark piece that sounded like death in musical form. How could classical music get it so wrong when we needed it to be right?  The only piece that worked, kind of, was the prelude to Carmen. When that came on dad raised up a bit and made a slight arm movement.  

By night time classical wasn’t doing it.  He was staring at the TV with a dark rage simmering.  I changed the station to one of those channels that’s all nature with “soothing music” in the background.  Trees, waterfalls and then some super weird space odyssey thing that again kind of looked like what you’d show someone while you instructed them to “go toward the light”. Dad wasn’t having it.  

“I can’t watch this shit all night.” 

Fair enough.  Back to classical. It was back on the same loop. More Mendleson’s wedding march, more “creepy song of death”, a bit more Carmen. 

This can’t be how it ends, I thought.  Here in a room with dad actively trying to die to get out of this hell. He was in so much pain. 

I asked him about morphine again. “Don’t you dare ever make that suggestion again,” he told me firmly, “ I will not put that chemical in my body.”  But he was in so much pain. Crying in pain. 

I went to the nurses’ station to see if they had any suggestions for him other than morphine.  The nurse, Jamie,  was on the phone when I got out there.

“No, we’re not moving him,” she said. “He’s probably not going to make it though the night and we’re not moving him.” When she got off the phone I asked what the call was about. 

“They want to move him down to the Comfort Care floor,” she said. “I told them no.” I asked why.

“You don’t want him down there,” she said with a chilling finality.  

I have no idea what the “Comfort Care” floor consisted of but the piercing look she gave me said it all. She was fighting to keep dad in a better place.  A place he hated and wanted no part of, to be sure, but a better place than the Comfort Care floor that sounded, in that moment, downright dystopian.  

Finally the nurse got him to agree to Tylonol.  I understood though, he didn’t want to become confused or not be in the moment.  Reminded me so much of hypnobirthing and wanting to be part of the experience, not wanting to drug the reality out of the moment.  He wanted that too.  But the pain was intense and really he was ready to leave.  He couldn’t get comfortable, he was angry that he hadn’t died.  

This whole time Kaya was there, in her nest on the window sill.  I took her out to the waiting room a few times to gage how she was doing. It was during that time that she told me about her perspective on death.  “ I get to choose what I believe so I believe you can be in the air around us and also reincarnated.  But, being a person is a lot of work and it’s hard, so I think you can alternate.  Be a dog for a life because their lives are shorter and then be a person the next round.  Go back and forth.” I told her I liked that idea and she said that she did too. 

I asked how she was doing with all of it.  She said that other than seeing the vein in his neck move, which she didn’t like, she was doing okay.  She asked what would happen after he died.    “Do we just walk out without him?” Yes, we do.  

“Will he be cremated, and if he is, can Montana get cremated too so they can always be together?” That sounds like a good idea.

“Will we be able to keep Papa close somehow, maybe by having some of his ashes?” I think we can do that.  

That night Kevin Barry came to the room with pizza for everyone.  (Bonnie, Monica, two Kevins, Hayden, Kaya, Brian and myself.  Now we were eight.  Nine if you counted dad.) We ate and talked and for a moment dad was happy. He loved the chatter and the normalcy of it all.  Then he left and Brian left with Hayden.  We were back to the five of us (six counting dad). 

Kaya rebuilt her nest, kissed her Papa on the head and drifted off on the windowsill.   

I was still trying to sleep in a chair next to the bed. My chosen position was slumped forward with my head on his bed.  At one point my body did that “jolt thing” and I basically punched him in the leg and foot.

I would drift off for about five minutes and then wake up to hold dad’s hand.

“I don’t know how to do this,” dad said to me in the dark. 

“You don’t need to know.  God knows. Follow God and he’ll show you the way.”

“I know.  I love you”

“I love you too, so very very much”

“I don’t think I’m going to make it out of here,” he said as much to himself as to me.  

 That moment broke my heart.  All he wanted was to make it out of that hospital.  To see his dog one more time.  To feel agency over his own life.  He couldn’t die when he wanted, he couldn’t live the way he wanted.  He was angry and so frustrated.  

“I don’t care if I die in the ambulance going home. I want to go home”.  I told him that if he still wanted to go home in the morning we’d respect that.  We knew it would probably kill him and we don’t want him to die alone but at some point his wishes matter.  

He became agitated again, so angry. He wanted to “get his shit and just go”. He felt like God had failed him because God wasn’t showing him how to die.  He was in pain and running out of faith.  Out of ideas I called for a priest again. It was about 1am at this point and apparently the “on call night spiritual person” moonlights as a crazy cat lady.  She came to the door of his room and my first thought was, “Ah, hell no.” Not only was she not a Catholic priest, she looked like she spent her free time binge watching QVC and discussing the presence of fairies or something.  Now, it’s possible I’m projecting here, but it was 1am and none of us were really feeling like seeing more things done “wrong” at this point. I met her at the door.

“Do you know the Lord’s Prayer?” I asked.

“He’s Catholic right? Is that the short one or the long one?”

“The short one.  Catholics don’t do the extended dance mix at the end.”

She nodded.  “I’ll just drift off toward the end and you end it where it’s supposed to end.” 

Sure.  Whatever.  “Nothing else, just the Lord’s Prayer” I told her. 

I could just imagine her trying to give dad words of spiritual wisdom at that moment. My dad who spent two years in the Seminary, my dad who was in pain and pissed and having a crisis of faith.  All he needed in that moment was some crazy cat lady spouting platitudes about “God’s love”. He would have lost his shit.  

We all held hands, again.  We said the Lord’s Prayer. Again.  And then she left. 

“I’m sick of this shit,” was all dad said.  

2:30 the nurse came in and said they got him a bed in hospice.  We’d need to make the decision to transport right away. I asked them to find out if his dog could visit.  They said yes.  Decision made.  Bonnie wasn’t sure. “He wants to go home,” she said. 

“This can be a spot on the way if it needs to be. A detour”. She was too tired to argue and I knew that dad needed to go somewhere, anywhere.  He couldn’t just keep waiting to die in that room.  

I crouched down next to him. “You know how you kept saying you want us to break you out of here? Well, we’re doing it. You’re going to a place where Montana can visit you.”  

He smiled.  “I love you so much”.  

The nurses grabbed a bunch of bags and helped us pack things up.  We had an enormous bowl of fruit and snacks that the nurses had brought in earlier in the night.  Apparently the closer to death one comes the more snacks appear in the room. Jamie, the nurse, helped us gather everything up and she walked us to our car while they transported dad. The hospice, The Gosnell House, was only about ten minutes away.  

We arrived at the Hospice at about 3am.  It was then that we discovered that only four people were allowed in the building at a time.  There were five of us.  It was four am.  They wouldn’t budge on the rule. We tried to make the argument that as a 12 year old Kaya was only a half of a person.  They weren’t buying it.  We explained that it was 3am and there was no way to get a hotel room at that hour.  I asked if Monica was expected to sleep in the car.  The answer, it seemed, was yes.  Monica curled up in the vestibule looking for hotel rooms. 

The room was large and homey with a big window next to the bed, a large pull out couch and a massive aerobed tucked in the armoire.  There was a refrigerator and a microwave and a table large enough to seat a few people. 

We got dad settled in and Kevin went over to him. “We said we’d get you out of that hospital and we did,” he said.  

“This place is just as terrible as I knew it would be,” dad replied.  

Kevin and I decided to head home, one, so that Monica wouldn’t have to sleep in the car, and two, so we could get a few hours of sleep and get the dogs to bring to dad. That felt like the only thing that could cheer him up at that point.  

Kevin and I made it home by dawn and we slept for five amazing hours. It was the longest I had slept in well over a week and it felt glorious.  We woke up and got the dogs to bring to dad.  He had never met Duke, the little Cavalier King Charles Spaniel.  Montana, the golden retriever, that was his boy.  I hoped it would make dad feel a bit better to see his dog. 

Friday October 15

When we got to Hospice the viibe was completely different.  So welcoming.  

There was a Family Kitchen with coffee, mugs, muffins, cookies, you name it.  Basically just rummage around and find what you want, like a regular house.  There was a family living room area with a fireplace, couches and books.  But most notably the nurses felt different.  They looked dad in the eye, they waited to hear his responses.  He wasn’t a problem to be solved, he was a person who was ending his life and they wanted to make sure that he did it with his dignity intact.  

We brought the dogs into the room and Montana went right over to dad. Montana didn’t jump up on dad the way he normally would, he was tentative.  He lay on the floor in front of him where dad could see him. It felt like he knew that he had to be gentle and that it was more important for him to be seen than to be touched (though they did that too).  Dad smiled for the first time in a while and there was an air of calm that hadn’t been there in days. It was a glorious fall day, the kind that only Portland Maine in October can deliver.  

I turned to Bonnie, “I wish there was some way to get him outside,” I said.  I knew there were wheelchairs around for exactly that purpose. 

“I know, but he’s just too weak,” Bonnie said.  

It was true. There was no way he could get out of bed at this point. So, we enjoyed the time with the dogs and after a while his nurse, Roxanne, came in. 

She was from Stonington, Connecticut too and that made dad like her right away.  She was also tough and brash in the way he always appreciated.  

“What did you do for a living,” she asked him.

“I was a judge.”

“Well, I raised four kids and I can be just as tough and bossy as you,” she told him.  “You have your dogs now.  What else can I get for you?”

“I want to get out of here,” dad replied.

Roxanne didn’t miss a beat.  “That sounds like a plan.  Let’s find you a blanket and make it happen.” 

Mere moments later they had a blanket on dad and they opened the door and wheeled his bed out of his room and out the door onto a beautiful patio under a tree with fiery red leaves.  It was that perfect warm fall day, cloudy and cool but not cold. Dad lay there and looked up at the tree and then fell asleep outside listening to the birds and sounds of being outside. He slept out there for about an hour until it looked like it was getting ready to rain.  We brought him in and I asked him how he was doing.  

He said, “It’s been a really good day.” 

Later that afternoon Roxanne came back.  She asked dad about his pain scale.  

“Ten out of ten,” was his reply.  Roxanne recommended morphine and for the first time dad agreed.  She assured him that it would be a low enough dose that it wouldn’t impact his ability to communicate, it would just take the edge off.  She was true to her word.  In the days that followed dad was lucid the whole time.  His pain was managed but we didn’t lose him in the process.  

The fact that he stayed lucid was actually a shock to all of us.  The blood infection was likely the cause of his confusion and the doctor said that once they stopped the antibiotics it was likely that he would become confused and disoriented again.  But, he didn’t.  The entire time he was in Hospice he was lucid.  Right up until the very end.  His worst fear, that he would lose himself, never happened.  He was fully with us the whole time.  

Later the nurse came in again and talked to us about the process of transitioning.  She said that he would start to experience apnea (periods of time when he wouldn’t breath) and that given the nature of his issues his lungs might start to fill and fluid might drain from his mouth a bit.  She said when that started to happen they would turn him on his side to make it more natural.  She told us that many times patients transition relatively quickly after arriving at Hospice because they know they’re safe and it feels more comfortable.  Hospitals are a place to go to fix, hospice is a place to accept and embrace.  There’s no fixing this.  There’s only accepting and embracing.  And he could feel that. I know he could.  He was ready to go, he had been ready since Wednesday night but he needed to see Hayden one more time (Thursday) and see Montana one more time (Friday).  At that point there was nothing left that needed to be done. The words were all spoken, the moments were all shared.  It was time.  Whether it would be an hour, a day or a week, the time was here.  

They put a pillow on his stomach for him to hug and that seems to bring him comfort.  I loved all of the details that they thought of that brought him comfort.   

Sometime on Friday Bonnie and Monica left to go down to CT to get Bonnie’s medication.  She could have had the prescription filled remotely but she insisted on going down in person to get it.  I realized that what she likely needed was to walk through the door of her house alone one time before dad was fully gone.  A dress rehearsal of sorts.  I understood.  I needed those moments too.  The idea of practicing for the “after” didn’t seem strange to me at all.  For me it’s wondering who I will call on my drive home every day.  The reality that nobody will say, “Hey Pooh” in that voice, with that energy and enthusiasm ever again.  My emptiness is different from Bonnie’s, to be sure, but I understand the need to pre-process some of the grief in an attempt to take the edge off a bit.  

Once Bonnie and Monica came back Kevin and left to drive home. It was around 2am again, or something like that. It gave us time to talk.  

“You know,” Kevin said, “It’s so weird to think that just a few days ago we were all in that hospital room subconsciously tapping our feet waiting for dad to die just to move things along.  He was miserable, we were trapped, and we all felt it. This energy feels so different.” 

He was right.  It did.  Hospice isn’t a place to fix, it’s a place to accept and to ease the burden of the transition for everyone.  Dad didn’t have to worry about not “knowing how to do it” here.  They all knew exactly what they were doing and they could guide all of us through it. 

Saturday, October 16th, 

Another gorgeous fall day in Portland.  Another day with dad outside under his tree and the rest of us gathered around him with his dogs at his side (or in the case of Duke, the little one, dog on his stomach and in the crook of his arm). 

The challenge we were still facing was the number game. There were five of us.  Bonnie, Kevin, myself, Kaya and Monica.  Monica, Bonnie’s daughter-in-law is a nurse and she had flown in to take care of dad when he went home.  But, now that he wasn’t going home her role had changed.  Now she was there to be Bonnie’s person.  Kevin and I were navigating the waters of our grief as dad’s kids and Bonnie needed someone who could be there just for her.  That left Kaya.  Number five.  We decided that after Brian brought the dogs to see dad that Kaya should leave with him.  Honestly, it just felt easier and not knowing what dad’s transition will look like it felt a bit safer (if that’s even the word). 

I tried to frame it in terms of us needing her to take care of dad’s dogs for him. She broke down sobbing.  She didn’t want to go.  She needed to be here with her Papa.   I went to the kitchen area and the chaplain was there with two college volunteers talking to Bonnie.  The college girls went with me to talk to Kaya.  They were so kind and what I loved most was that they didn’t seem to have any place they needed to be.  They were just there for her for as long as she needed them. One of the girls knelt down next to Kaya, 

“I know how you feel,” she said.  “When my grandfather was dying I wasn’t able to be with him and that has always been hard for me.”  

At that moment I knew.  I saw the pain on the volunteer’s face and I could see her remembering her own pain at not being allowed to be in the place where she felt she needed to be in that moment.  

We went back to dad’s room and Kaya looked at her papa and said, “I want to stay here but they’re making me leave.” The look on dad’s face said it all.  And then I realized, not for the first time really, that this wasn’t all about us. It was also about dad.  Early on he told us, “Anyone who wants to be here needs to be allowed to see me. Nobody should be kept away.” And that included Kaya.  This little bundle of energy who could talk to dad for hours about his dogs, about her halloween costume (or lack thereof), about anything under the sun. He needed her there as much as she needed to be there.  We could make space for her.  We needed to.

I pulled the nurse aside and asked her if she felt it was appropriate for Kaya to be there. I had never been this close to death and I didn’t want to inadvertently traumatize her.

“You’re modeling what this can look like in a healthy way,” she said.  “If Kaya feels that this is the right place for her and you and Brian are okay with that, then this is the right place for her to be.”

And so she stayed.  She worked on assignments, she completed puzzles, she ate too many cookies and drank too much soda from the family kitchen.  She talked to the nurses and sat with dad and filled the space with her energy and her youth.  

Sunday October 17th

Such an amazing day. We got dad outside under that beautiful red leafed tree and for a while everyone was there – Bonnie, Kevin, Brian, Hayden, Kaya, Monica, Kevin Barry, Montana, Duke and me.  It was a party, of sorts, and dad was the guest of honor.  He smiled and laughed while we told jokes about my car brakes in college and all kinds of other things.  We sat in the sun and just enjoyed each other’s company.  

Dad was weak, he tried to have ice chips on a spoon but even that was hard for him.  But he was present and he was happy.  When I asked him how he was doing he said, “This keeps going up and up, higher and higher” I had to agree. 

Brian had brought Hayden up with the dogs to spend some time between dance class and Nutcracker rehearsal and I loved that she got to see him outside rather than in a hospital. She was comfortable and he loved having her there by his side.  

Hospice is amazing, it allows for so much independence and agency on the part of the residents and it makes a difference.  In the afternoon we left Bonnie to have time with dad while Kev and I took a long walk with the dogs. She needs time with him. There is so little time left and they have so much to say, or not even to say, just to be in one another’s presence.  So Kev and I walked and we talked. 

We both realized that we had no idea how horrible the hospital really was until we got to hospice.  At the hospital it felt like we were messing with the timeline for things the longer dad stayed alive. It was as if his continued existence posed a problem in some way.  The nurses were fine, it was just the overarching feeli.  Like when you’re in a restaurant when the place is closing and the waitress keeps telling you there’s no rush but really you know there is.  That’s how that hospital felt when dad didn’t die according to the clock.  But here he could live as long as he needed to and there wasn’t a sense of urgency.

At one point a group of singers came down the hall.  They stood at the door and sang Amazing Grace at dad’s request.  It was lovely and kind and it left me wondering how someone knows they have the strength to sing in a hospice. How does anyone know they can do that? To be in the presence of looming death and to stare it in the face with confidence and calmness. I can do that now.  I couldn’t do that two weeks ago. 

At another point a priest came in to deliver the last rites (this was the third time I think) What I loved was that this priest was dressed like a priest and he was an actual Catholic Priest, rather than a “comfort minister” like the one who came to the room on Dark Thursday. This priest was a real priest and it was clear. I love hospice for putting that effort in.  

Once he was back in the room we turned on some Neil Diamond, at dad’s request. That was hard for me.  Those are my childhood songs and while my adult self can navigate these waters fairly well, my child self was breaking every second.  I don’t know how I’ll be able to be without thim. Those simple moments; calling him on the phone, telling him what the girls have been up to. The ache is so profound.  I don’t know how that part works. I don’t know if I’ll ever really know.

Before we left for the night, so Bonnie could have her time with dad, he held my hand and Kevnin’s hand and he told us both again how powerfully he loves us.  We had so many of those moments, moments that felt  like the last goodbye and then weren’t, and every time I felt so blessed to hear his words one more time.  I could never grow tired of hearing him tell me that he loves me. I want to carry that with me forever and I don’t know how. 

He asked that we pray for him the next night at that time 6:45pm, wherever he was.  I knew then that he thought this would be it.  Again, to pass in his sleep was his dream and his wish.  But the body has a tricky way of ignoring the mind.  

“I couldn’t possibly love you more,” he told me.  THen he smiled and closed his eyes.

Kevin, Monica, Kaya and I went back to Kevin and Judy’s house for dinner and then a few hours later I brought Monica back to the room.  I wanted to make sure Bonnie had time with dad but I also didn’t’ want her alone if dad passed away in the night.  

Monday October 18th

Another perfect fall day outside under dad’s tree with him.  So sunny and warm, almost too warm for late October.  Dad was tied, less responsive.  But at one point he looked up and smiled and said, “What a wonderful way to live.” And it was.  It is.  The difference between Dark Thursday when he was actively trying to die to get out versus being under a tree in the sun surrounded by his family.  No comparison. 

Later dad became less responsive and more agitated.  He started begging God to help him.  “Help me, help me, Lord please help me,” He begged.  We went to find his nurse to help him with pain management.  At one point he looked toward the far corner of the room.

“Can you bring them closer?” he asked.  

“Who?”

“Mama and Papa,” he said. “They’re standing right over there.  Can you bring them closer?”

I love that he saw his parents. I don’t know what that says about death or the afterlife or anything really, but I know that in that moment it was profoundly comforting.  

His nurse increased his pain medication to help to ease his transition and to sooth his pain and his fear.  It was the right choice and he drifted into a peaceful calm.  

Tuesday October 19th.

We stayed with Kevin and Judy again and in the morning we went to the beach before going to see dad. Kevin was working through some emotions that had cropped up (as tends to happen) and we both needed a bit of nature before going back to Hospice.  We walked along the small rocky shore and I collected sea glass. It will become a picture, I think.  We talked a bit, Kevin and I, but we also just listened to the waves and let ourselves be in that moment that we were in.  

The rest of that day was the belly of the beast.  I was feeling the pressure to be back at work. How long had I been gone at this point? God only knows.  Days blurred together but as long as dad was lucid this is where I needed to be. Only now he wasn’t lucid.  He was there in the room, so quiet, peaceful and breathing, but clearly straddling two worlds.  He was no longer with us at that point but he hadn’t taken that final step away either. I couldn’t tell work how much longer I’d be out because I had no idea.  All I knew was that pressure seemed to be mounting and the real world seemed to be waiting with lessening patience.  

Kaya had missed so much school too. This was where she needed to be as well but all of us were quietly wondering, now what?  What if he lasts for a few more weeks? Do we just get up and leave and return to our lives? Do we stay in this holding pattern indefinitely.  None of this is to say that we didn’t want to be there.  There was absolutely nowhere else any of us wanted to be.  But that was the challenge. Real life was still turning outside the door while we sat together in that space with no sense of how and when the next step would occur.  

That room felt like it was about everything but dad that day. Bonnie was on the phone taking care of the business of death, Kevin was trying to reverse the charge on his credit card when we cancelled dad’s transport to Connecticut, Monica was trying to figure out how she was being changed for a hotel stay that nobody had any record of, Kaya was struggling with science homework and I was trying to grade papers.  All while dad lay there next to us in his morphine sleep.  In fairness there’s only so much time we can spend holding his hand and gazing at his eyes (and chest) to be sure not to miss that moment. We had done that. A lot. It’s weird.  But it was also weird to see life kind of resume around him while he was still there.  

It makes me think of what it must have been like in generations past when people passed away at home and life would continue on around them. I’m not sure that’s the worst thing honestly.  The sounds of life all around as you pass on to the next adventure.  I suppose it could be worse.  

Worse was the room next to dad’s.  There was a man there who had been there as long as dad and not a single visitor came to see him. He watched baseball day and night, top volume, all alone.  Even now I don’t know his story, but I do know that hospice means he is at the end of his life and he is absolutely alone.  The nurses were amazing and they sat with him, but still. Hearing him through the wall, his baseball blasting to fill the space of that empty room was a reminder that this was the place I needed to be.

A reiki practitioner came in to do energy work on dad.  It clearly relaxed him. He was still unresponsive but his breathing changed. It became less ragged.  It smoothed the edges.  She also worked on Kaya and Bonnie.  Both of them tend to be high strung even on the calmest of days and there was very little that was calm on this particular day.  We knew that we were getting close and none of us knew how to process the transition back into the “after times”.  

Kev and I went for a few long walks through the neighborhood. We had done that most days just to get out and to give a chance for Monica to come in (four person rule.  The one area where the Hospice was anything but flexible). It gave us a chance to talk about how we were doing, but also to talk about logistics that we had never really thought about.  The need for a DNR in writing (Bonnie and dad had gotten the paperwork for a Do Not Resuscitate Order but they had never returned it to their primary care provider.  Those first few days when it was just me in the hospital were touch and go and I had no authority to state what dad wanted because even though I knew his wishes nothing was on file and I wasn’t the healthcare proxy.  The number of death certificates needed for all of the agencies that require them (around ten). The laws regarding cremation (in Maine direct cremation is allowed, meaning you don’t have to go through a funeral home if you don’t want to.).  The “In lieu of flowers” part of the obituary (we’re thinking donations to Gosnell House Hospice).  The reality that I would have to write an obituary.  The service.  Is that something dad would want and how do we even set that up?  And then back to the moment we were in. How powerfully thankful we were to be where we were in a place that’s beautiful, October in Portland, Maine.  

We decided to go home for the night.  We had been staying with Kevin and Judy at night for…forever it seems, but I was craving home. I wanted to see Brian and Hayden and the cats and the chaos of home for just a minute.  If we got the call and we were an hour away that would just need to be okay.  The staff assured us that there would be time to get there if necessary.  Nothing happens all that quickly after the passing.  There’s time to say goodbye.  

Wednesday, October 20, 2021

We stayed at home last night and this morning I called Bonnie to get an update.  She said that her friend told her that often people who are dying wait until they are alone to transition. I said that the nurse told me the same thing yesterday and my friend Jaime had told me the same thing.  Apparently that’s really common and like so many aspects of death it’s just not something that gets discussed a lot.  Bonnie said she was planning to spend the day in the family living room area.  I suggested that instead we all go to lunch in Old Port (the waterfront in Portland, Maine). She loved that idea so Kev, Kaya and I headed up to get her and Monica.

When we got there we went in to see dad briefly .  He looked so frail and his breathing was so labored.  His cloring was different, more grey/yellow.  His face was kind of sunken, more than normal, which is saying a lot for him. It was clear that he was close. I kissed him and told him again how much I love him.

“It’s okay to let go,” I told him. “We’re all okay.”  

I kissed him one more time, Kaya kissed him, Kevin had a moment with him and then we left.  Bonnie had a moment with him while we headed for the car.

We ended up at the Portland Lobster Company, a small, unpretentious waterfront restaurant on the dock.  Paper plates and pitchers of beer overlooking the harbor.  Exactly the kind of place dad loved most.  We ordered a pitcher of Shipyard beer and a lot of lobsters.  The beer came and we raised a glass and toasted dad.  

We had just put the glasses down when Bonnie’s phone rang. Dad was gone.  Just after noon on another perfect day in Portland, Maine.  Dad was gone. There’s no way to look at that moment and not see dad’s hand in it.  That is everything he would have wanted. He didn’t want us there in a room with him watching his chest rise and fall and waiting.  He wanted us in a bar on the waterfront raising a glass to him surrounded by love, ocean air and lobster.  It was everything he loved. 

Hospice told us to finish our meal and then come back.  When we got there there was a bit of chaos.  Four person rule was still in effect and the front desk woman miscounted and wouldn’t let me go to see dad.  Kay, Kevin and Bonnie went back and I was left at the front desk alone (Monica had gone around the building to dad’s window).  I collapsed on the front desk and sobbed. I cried for dad and for me and for Kaya seeing her Papa for the last time alone without me there with her (as it turned out kaya and Kevin stayed in the hallway so Bonnie could have time with him.  She didn’t go in without me).  But at that moment it all released.  The weeks of holding it together, being strong, saying how blessed I felt about all of it. The dam opened and I just sobbed.  People came over.  I couldn’t really hear what they were saying. One of them may have said, “You can go see him” but I couldn’t move. I was frozen there in that spot, frozen in time, in that in between moment where I had last seen him alive and now he wasn’t.  Kaya appeared behind me and I felt her presence there. I turned and held her. I hugged her and I stroked her hair and I told her it was okay. I hadn’t wanted her to see me cry like that but maybe it’s okay that she did.  There’s a place for utter grief and maybe the lesson doesn’t have to be to show strength and to be okay.  Maybe there’s a place for the sadness to live too.  

We went in and saw dad one last time.  He looked the same as he had looked that morning.  The only difference was that he was on his back holding his rosary and his chest wasn’t rising and falling.  But, he looked the same.  I kissed his head and I told him I loved him.  Kaya said goodbye, Kevin said goodbye. And then it was time.  

Exactly as Kaya had asked me earlier, “Do we just leave when it’s over?” Yes.  

Bonnie stayed to take care of the details and Monica stayed with her. I’m glad I wasn’t’ there for that part and that Kaya wasn’t there for that.  Our last memory of him is there in his bed in that place that took such great care of him with his purple plastic rosary and that look of perpetual calm that he mastered so many years ago.  

I don’t know what happens now. I mean, I do know.  Life continues to turn. I go back to work on Monday and Kaya picks out a Halloween costume and Hayden dances. Brian cooks and works on the deck some more and Bonnie….Bonnie learns how to live in that space with his presence in the air rather than in the room. We all do.  We all learn how to find him in the space around us.

I can’t call him now and that is so brutally hard I don’t even know how to begin to process it.  I don’t’ get to hear “Hey Pooh” again.  I have to learn what it’s like to live in this “after” space.  It’s a place we all find ourselves in if we’re fortunate enough to outlive our parents.  But, for as normal as it is, none of it feels even remotely natural.  Maybe it never does.  I don’t know really. Maybe there’s a new normal now where I talk to dad on my car rides home in my own mind and heart rather than on the phone.  Maybe I find peace in remembering just how absolutely at peace he was in those final days and in knowing that I was able to drop everything, absolutely everything, to be with him during that time.  Maybe that brings peace. I hope it does.  I hope when Hayden dances she feels his presence like he told her she would. I hope when Kaya gets a dog (and yes, she’s getting a dog) that she feels his presence when it acts all goofy and cute. I hope when Bonnie is out there in the yard talking to him that she hears his reply, even if it just comes through in the wind or in her heart.  I hope we all find a way to be at peace and to celebrate his life with ours in all of the moments.  

I feel so blessed, so utterly blessed, to have had this incredible man as a father.  He was kind, patient, selfless and steadfast.  His belief in God and in a future after death was solid and unwavering (except maybe a bit during Dark Thursday, but he got to the other side of that).  He loved unpretentious bars on waterfronts with pitchers of beer and lobster on paper plates. He loved his family more than words could possibly say.  He loved his life and he loved how his life ended with dignity and peace. 

I have said a few times to a few people that if I could write the story I’m not sure what I’d change, it’s been such a beautiful journey. I mean, I’d change the ending and keep him here with us forever.  But, in my heart I know he already is.  

I love you dad.  And see, I promised I’d tell the story.