The Final Journey Part 14 (The Dream)

Wednesday March 15

She’s there! I exclaimed to myself as my eyes popped wide open. It was my first thought after awakening from a deep sleep. I was lying on my back feeling elated and the most rested I had in a long time. I didn’t want to wake up. I wanted to go back to my dream. She must be settled in by now, I thought, or maybe I hadn’t been ready to receive her until now.

Some say that those who have passed on visit us in our dreams. Being a practical guy and not falling easily for esoteric, new age ideas, I would never have believed it myself, but it happened to me once before. When Gram’s son, Chubbs, died, he too, came to me in a dream months later. My therapist says we dream every night, we just don’t remember most of them. I’m not sure about that, but I do know that I only remember a few dreams per year. And this one was significant.

On the surface, the dream was weird – the scenes were choppy and incomplete - as I suppose most are. But as I recapped it in my head and with my best friend, Natalie, the next day, I believe it was deeply symbolic and meaningful.

It was nighttime and Gram and I were sitting at Del Frate’s bar in downtown Pittsburgh, a place where I spent a lot of time in the late 1980’s. It was dimly lit and we were amid the constant din of voices, some conversing with us. I couldn’t see faces, only torsos, and I don’t know who these people were. Gram didn’t drink and certainly didn’t frequent bars, so I’m not sure why we were there. Gram broke through the noise, “I have to go. I’m getting the bus home.”  

“No, I’ll drive you.” I was always afraid for her walking around or riding the bus at night in the city, which she did for many years while working at Carlisle’s. Within seconds, I was in the passenger seat of my car, which was in a parking lot across the street, looking at Gram sitting in the driver’s seat. I wondered why she was there. She never learned to drive. “I’ll drive.” I said.

Suddenly we were in a large field with lots of people. The field was situated on a large, grassy hillside. It was a cloudy day, which made it easy to see the circular grove of trees at the very top without having to squint. The hay-like grass was long with blades of brown intertwined – typical of late summer. A path had formed where the grass was worn down from the foot traffic. To the right was a long, galvanized, chain link fence that separated those of us walking up the hill from a soccer field and an adjacent baseball diamond. I couldn’t tell if anyone was playing there, though. The landscape was vivid, but there were no faces on the people and there were no sounds coming from them.

There were people of all ages, too, on this hill. They were walking about purposefully and in unison – in the same counterclockwise direction and never stopping. It was not a hustle and bustle, they were moving more slowly than that. Yet they were not zombies.

Gram and I were walking up the hill along with the others. Gram was walking a few feet behind me and to my right.

We turned with the crowd, toward a plateaued area on our left and continued to walk. This area was grassy, too, but it was much greener, shorter, lawn-type grass. There were white track and field markings chalked onto it. Children were running around and playing here. I could not hear them and they were not in unison with the adults.

I looked over my right shoulder to check on Gram and my heart dropped suddenly when I realized I had lost her. In her place, now, was a white-haired woman. There was no face on this woman, only white hair. She walked with me as I re-traced my steps in an attempt to find Gram. My body began to tremble and I felt that familiar, uneasy feeling in the pit of my stomach. “Have you seen Gram?” I asked people as we walked. But no one responded to me. They kept walking.

As we walked over the plateaued area and back down the hill and began the ascent back up to where we started, I was puzzled as it became clear to me that we were all simply repeating the same large circle - up the hill, left to the plateau area, then back down. No one ever made it to the peak where the trees were. I didn’t have time to figure it out.

As the white-haired woman and I made it back around along the fence, I, once again, turned to my right side and noticed I had now lost her, too. I was suddenly alone and confused. I stopped dead and turned completely around and there, about 20 feet down the hill behind me, was Gram. She was with the white-haired woman and giving her hell about something. I could not hear words, but I could see Gram waving her finger at the woman.

It was only then that I finally saw Gram’s face and image clearly. I noticed in that moment how beautiful she was. She was the young, vibrant, and healthy Gram of earlier years. Her hair was dark and neatly curled. (It was still dark when she died, too, but had recently become streaked with gray.) She was wearing lipstick and had powdered her nose and cheeks like she used to. She had on a two-tone blouse, whose turquois and blue colors were soothing. It reminded me of some sci-fi women’s styles from the 1980’s. It had stiff, pointed shoulders that protruded over her arms. Perhaps something you’d see on Joan Collins back then, but Joan’s would be power red. The blouse went to the waist and covered the top of her dark wool slacks. Upon seeing her, I immediately stopped trembling and my stomach settled.

I woke up.

As I lay in bed contemplating my dream, I wondered if I had visited heaven. Is that what the field was? Were the people there those who had passed before? Or, rather, was the field symbolic of life here - more specifically - the circle of life, represented by the young, the old, and the repeating of the circular movement through the field. I suspect it was the latter.  

Furthermore, I don’t think I lost Gram when I turned around. I think she broke away from me or perhaps, more appropriately, released me. I believe she was conveying a message that it was ok for me let go of her and get on with my life – that she was fine and didn’t need me to worry about her anymore. And those 1980’s references – the bar, Gram’s outfit? I believe they harkened back to a time when things were better, when Alzheimer’s wasn’t even a consideration and when Gram was vibrant, active, and healthy.  And I believe they aided in reinforcing the message that she was whole again and I could move on to seek my new purpose.

The white-haired woman was Jude, Gram’s daughter-in-law. I’m sure of it. Gram was giving Jude hell as she often did throughout the many years of their love-hate relationship (mostly love). Gram would definitely want me to be there for Jude, but perhaps she was telling her to take care of herself so that she would stay healthy and stay around for a while. Jude and I also share a bond and losing her will be difficult. Gram knew that. Or perhaps she was simply giving Jude hell because it’s what she always did.

As I got out of bed to start my day, I thanked Gram for the visit and the message. She may never visit me again, as Chubbs never came again after that first visit. But I take solace in knowing that she is ok and our bond has been re-established. 

The Final Journey Part 13 (Provincetown)

Wednesday October 19

The drive up Route 28 north was different this time. Nothing had changed on the route; it was still 35 miles on the highway before switching over to the mostly two-lane, twisting and mountainous, country road. The drive was dark and especially quiet at 5:30 a.m., interrupted only by the occasional lights and passing of an 18-wheeler. It would be 90 minutes before I reached I-80, the interstate that would take me across Pennsylvania.

There was an eeriness to the drive this time, though – not only was it dark and quiet, but a thick layer of fog neatly hovered between the road and the sky, as if suspended on cables. That fog would stay with me until daylight. I noted how it metaphorically resembled my own recent state of mind. This first part of the drive was always the most peaceful part of the trip. I could relax and let my mind drift. The few vehicles on the road at this time of the morning meant that I only had to keep my eyes peeled for deer, especially once I hit the two-lane portion of the road. It was normally a long, lonely drive to I-80, but this time it few by. The radio was blaring with the KDKA morning show, but I didn’t even hear it. I was deep in thought and not in my usual frame of mind.

My October Provincetown trip was historically about Alcoholics Anonymous. It had been more than ten years since I first attended the Provincetown AA Roundup. I loved it immediately and I haven’t missed a year since that first one. Close to a thousand gay and gay-friendly alcoholics would descend upon the tip of the Cape and we would enjoy a long weekend of friendship, fellowship, sobriety, and fun. In stark contrast to my annual summertime visit, October in Provincetown is a perfect time for sobriety, recovery, and peaceful reflection.

As always, there would be friends, too, those who were residents and who I often didn’t even see during my summertime visit as they were either hiding away from the crowds or too busy working seasonal jobs, or both. There would be those acquaintances from all over the country that I would see from year to year.

And so these were the things I usually contemplated on the drive  - who I might meet or what AA events or workshops I would attend; what new restaurants may have opened since summer or which would still be open this time of year; or which restaurants I wanted to try but couldn’t during the summer because they were too busy. Where would I eat? I’d wonder. How would I spend my free time? How much time would I spend with my friends? These were all the normal things.
This time, however, I wasn’t thinking about the normal things such as AA events or restaurants and food or friends. I was consumed with deep thoughts about my now life. I was wondering what this trip would be about. What did I hope to accomplish? It had been only nine days since I lost Gram. I was experiencing a major life change and I was lost. My therapist had suggested I was not only mourning Gram, but also my job as a caregiver, and my purpose, which had, for all of my adult life, been to take care of her in one way or another. Therefore, I was seeking purpose, direction, and faith. Four days in Provincetown wouldn’t be enough to find it, I knew, but I wanted time to reflect and I wanted to write in hopes of attaining some guidance.

As I drove, I reflected on the days since Gram passed.  I remembered how I thought this trip may not happen. When Gram stopped eating, I didn’t know how long she would live. I honestly thought it might be a month or so. And perhaps had she just stopping eating, it may have been a month. But when she stopped drinking, things moved quickly. The body can survive a while without food, but without water, only days. I realized, too, she had been slowly starving for the couple of months that I had been struggling to get her to eat. Of course, I would have canceled my trip in a second to be with Gram had she not passed when she did.

At home, I had put off doing Gram’s last loads of laundry. Some of it I had at my house before she died and there was that which I brought when Michelle and I cleaned out her room that morning she died. Doing her final laundry was difficult, but I wanted to get it done before Provincetown and donate it to ManorCare as I had done with the rest. I had procrastinated doing it and now scrambled to do so the night before I left.

As I reached in to gather the last load of clothes from the washer to place it in the dryer, I saw something in the bottom of the drum. It was a rusty nail. I immediately broke out in laughter. Over the years, I had found some bizarre things in the washer that Gram had picked up and stuck in her pockets – plastic gloves, cups, and money, to name a few. But the nail was a first. I picked it up, clasped it between my fingers as I shook my head and smiled. For a few minutes in my laundry room, I leaned on my washing machine, reminisced, and got comfort from a rusty old nail. I decided immediately I would keep that nail forever. It’s a perfect reminder of the character Gram was, especially in her disease – mischievous and curious, and in many ways, childlike. It was sad, but at same time sweet and funny. 

Before finishing up the laundry, I pulled out one of Gram’s favorite sweaters and a pair of PJs to keep for myself. I placed them safely in a plastic bag. They would provide me with comfort any time I needed to remember her smell.

When I arrived at ManorCare to deliver the clothing, I wasn’t ready to go downstairs to where Gram’s room was. Luckily, the woman at the front desk was there and told me I could just leave the bags in the conference room upstairs. She held the door for me, expressed her condolences, and thanked me for the donation.

I was exhausted and fell quickly into a deep sleep that night when I got home from ManorCare. However, I woke up middle of the night, terrified and confused. I sat up in bed. I rubbed my eyes and my head trying to determine if I was awake. I momentarily lost track of reality and I wasn’t sure if Gram was dead or alive. I struggled to get to reality. It took me several minutes to talk myself down and to realize that she was, indeed, dead.

By the time I had arrived at the ShireMax Inn, 11 hours after I set out, I had come to a couple conclusions about the trip.

First, this was not going to be a social trip for me. I just wasn’t feeling that way. Depending on circumstances in any given year, my participation level for the AA events varied. I decided I would not participate much this year. I yearned for alone time – for my thoughts and for my writing. I was so desperately afraid that if I focused on anything else, I’d forget Gram.

There would be two exceptions to my anti-social rule. They were my two dearest friends in Provincetown. I would be happy to see my friend Bruce and I would spend some time with him. He and I had been friends for many years. We met when he lived in Pittsburgh. He moved to Provincetown twelve or so years ago. He was responsible for turning me on to this beautiful place. My first vacation here was with him in 2002. I’ve come every year since.

I would also see my friend Dennis. Dennis has run the ShireMax since the first year I stayed there. His hospitality and upbeat, funny and colorful personality have kept me coming back. The Inn is the only place I’ve stayed since I was introduced that first time, probably six years ago. Dennis and I became immediate friends then. “Michael, if we had met when we were young, we would have been best friends,” he said to me once. I agreed. I cherish his friendship and I always look forward to seeing him and catching up.

Dennis greeted me with a big hug and immediately expressed his condolences for Gram. His sentiments were authentic and felt nice. He knew my relationship with Gram. He didn’t have to say much; I knew he understood. We caught up for a few minutes, but I was restless and tired. I wanted to shower, attempt a nap and scope out places where I could write.

Both of these guys knew me, understood my life, and respected my current challenges. There was no pressure with either. They respected whatever I needed to do. Furthermore, since I had been going to Provincetown 14 years, I was comfortable and knew my way around. I felt at home. This was the perfect place for me to be now.

My second conclusion was about the book I had been working on that would tell the story of my relationship with Gram and the journey through Alzheimer’s disease. The book suddenly seemed less urgent, even meaningless now. Was it still worthwhile? I wondered. I knew deep down that it was worthwhile, but not immediately urgent. For now, I was compelled to write a different story – to chronicle these last several weeks – those that led up to Gram’s death and those after. I needed to document this “Final Journey” both as a healing exercise and memory exercise. It would become my focus on this trip and for some time ahead. I would take a temporary hiatus from the book. Provincetown was the perfect place to reflect and write this story.

My first night sleeping in Provincetown was as equally disturbing as the night before at home. Again, I went to bed early, fell into a deep sleep quickly. I slept over eight hours. However, when I awoke, my body felt fully rested, but my mind was exhausted. It was odd, but I knew there was a lot that went on in my head during the night. I just didn’t remember any of it. I felt turmoil; I felt anger – not toward Gram, but about Gram, I think. I spent that entire day feeling emotionally exhausted. My brain definitely had a lot to work out.

In the end, I had a good trip. It was quiet and low-key. Although I had questioned whether it was a good idea to go in the first place, I learned that it was. I slept a lot. I needed it. I spent a lot of time writing and I spent some much-needed time alone. It was exactly what I needed. It was a good place for me to be at a time in my life that was not so good.

The Final Journey Part 12 (WTEA)

Saturday October 15

In the days following Gram’s death, I was consumed by sadness and engrossed in a deep fog that followed me everywhere I went and rendered me lost and directionless. I was going through the motions of life, but I was not present for it. This fog often left me unaware of my surroundings and it kept me distant - deep in my thoughts and memories. I was lucky, though. I had wonderful memories of Gram, many of which were funny and would have me smiling, and at times, laughing out loud – even at the most inappropriate times. I will always remember what a character she was. Was I grieving her? Absolutely, but I enjoyed remembering her antics and those many good and funny times. I had lost her, but I would always have my memories.

But as the grieving process goes, there were those "first time since” or “last time I did this, she was here” moments that accompanied everything that I did those first few weeks. Common when someone dies, I believe these thoughts are normal and integral to the healing process. They would diminish as I continued walking through my “now” life. They'd be there through the first year without her, though, especially during holidays, birthdays, and special events.  I knew this from experience.

As much as I couldn’t imagine my life without Gram, day by day I was beginning to see it. Life, indeed, did go on, whether I liked it or not. I was alive and I had things to do. Some of these things – those more immediate - would be different now, perhaps more significant and definitely more reflective.

On the Saturday following Gram’s death, I participated in the Walk to End Alzheimer’s. I didn't want to this time, only five days after losing her, but I was compelled. This year, more than ever, I needed to honor my commitment – the commitment to walk each year since Gram was diagnosed with this nasty disease. I had participated in the Walk from the early days when it was held at the Pittsburgh Zoo. A few years ago, it was moved to North Shore near Heinz Field, which was a much better venue, since it had grown so much.

Around the time that they relocated the Walk, I believe, they initiated the Promise Garden, too. This has become my favorite part of the event. Each participant is given a large flower that represents their reason for walking. The flowers are made of large fan-like nylon petals attached to a spinner so that the breeze catches and spins them. The stem is plastic and long two nylon leaves attached. Markers are provided for those who choose to write something on their flowers. The long stem allows for “planting” in the Promise Garden – an exercise that each walker is asked to do as they approach the starting line. At the end of the walk, each person can retrieve their flower to take home with them. Some, though, like me, choose to carry their flowers through the walk, unwilling to let go of them. The Promise Garden, with all of the purple, blue, yellow, and orange flowers spinning in the breeze, is a majestic sight to behold. It especially was on this day. 

For me, picking my flower this time was obviously different and doubly heartbreaking. Traditionally, I picked up a yellow, “caregiver” flower and wrote In Honor of Gram on it. But this time, I picked up a purple, “for those who have lost someone,” flower. It was difficult to find a spot at the table where the markers were, with all the people around it, but I managed to squeeze in and find a marker. As the tears rolled down my face and dripped on to the white plastic table cloth below, I struggled to write, In Memory of Gram. 

She was alive the last time I did this, I thought as I looked out across the large crowd that had gathered and was working its way toward the huge purple balloon arch at the starting line. It was a stunning morning. The sun was shining brightly in the crystal clear, bright blue sky. It was beautiful and warm - about sixty degrees to start - a perfect day to remember Gram. Thanks, Mum, I mumbled as I approached the starting line, as if she granted this day to me specifically.

Over the years, the Walk has been a way for me to feel purposeful about the disease – in hopes of eradicating it; supporting others in my own way; and, of course, to honor Gram. This year, it was particularly so.

Furthermore, participation has been a solitary and solemn event for me. I didn’t socialize much and I walked alone. I was there to remember - to remember Gram, reflect on her life and mine, and to be grateful for her. This year, I avoided talking to anyone and when I saw people I knew, I ducked away or pretended I didn’t see them. I wanted to be alone with my memories.

As I walked through the North Shore, carrying my purple flower, my life with Gram, again, flashed through my mind, just as it did a few weeks ago, prior to her death. All the things that took place over many years – that seemed to be frozen in time for the last eight – now all hit me as the stark reality of walking in memory of sank in. This made things real and at the same time, still so incomprehensible. I suddenly saw that old life fall away in pieces right in front of me and disappear – slowly at first and piece by piece – but then suddenly it all came down like an old building being imploded and crashing inward and downward toward the ground. Everything was gone – Gram’s house, the dinners, the holidays, the special Sunday evenings when it was just me, her, and Jude; the yard, the work – all of it. Gone. It crashed down - unfrozen and real. Of course, it had been gone for years, but it was as if it was just waiting for Gram’s death for this huge dose of reality.  None of it happened suddenly, but it felt very sudden that day.

As I continued to walk, my mind also flashed through the escapades of the years since this disease, reminding me that it wasn’t all doom and gloom. Scene after scene passed and I would laugh as they exemplified the foul, funny, outspoken character Gram was. Even the last coherent words she said to me demonstrated it: “I have to get the hell out of here.” I’d smile knowing all the people she had touched. I loved sharing her with others. Her antics were unmatched.

From this day forth, I would be walking in memory of Gram. Indeed the life was gone, but I had my memories. I would cherish them forever.

The Final Journey Part 11 (Goth Girl)

Thursday October 13

I went back to work Thursday. I didn’t want to, but knew it was a good idea. I needed my routine. Throughout the morning, though, I was consumed with Gram’s burial which was to take place at 9:30 a.m.

I went through the motions that day. My heart wasn’t in it and I couldn’t focus. I wanted to, though, and for a few moments here and there I did, but my mind would inevitably wander back to thoughts and memories of Gram as I struggled to believe the reality of what had happened in the past week.

 “You look lost,” one of my co-workers said as he walked past me in the hall. I was lost.

               I would visit the cemetery after work. My mind became focused on that. In doing so, however, I would experience something unexpected and beautiful …

Goth Girl

I was shocked when I opened the mailbox. I’m not sure why, but I didn’t expect to get sympathy cards. I did get them though - a bunch of them. I brought them into the house and placed them on the counter while I took care of the dogs and changed out of my work clothes. I was anxious to open them and read them, but at the same time, not. I know these cards would evoke strong emotions. I’d be a wreck again.

This morning, Gram was transported to her final resting place and buried. Gram hadn’t planned for a procession to the cemetery or a service there, so I hadn’t planned to go. Peter, from the funeral home, reassured me, though, that he would go along and stay until she was properly buried. He would then call me at work and let me know that it was complete. He was a compassionate funeral director who was diligent in his service until the very end. The sales manager at the cemetery, on the other hand, was crass and borderline rude. When I explained to her that there was no procession planned and asked, in case I changed my mind, if it was ok for me to come alone and see Gram buried, she replied, “You can come watch them bury her if you want, but be aware that it will be a bunch of dirty, blue collar guys digging a hole and putting her in it.
“What?” I replied, “I have no problem with blue collar guys and it certainly doesn’t offend me.” Peter’s kindness and compassion was in stark contrast to her nastiness. I really appreciated him.

I wanted to check on Gram anyway, so I decided to take the cards with me and read them at the cemetery. Seeing her grave would get me bawling so I figured I could do all my bawling at once. The cemetery is right up the street from my house, so it only took a few minutes to get there.

I walked over Gram’s grave wondering if my feet would sink into the dirt indicating that some settling would need to take place. I didn’t sink, not even a little. I walked back and forth and around the spray of beautiful flowers whose tag said “Great Gram.” We had placed them inside the coffin during the viewing and asked that they be placed on top of the casket for the service. Now they would remain on top of the grave until such time that the cemetery staff removed them. They were still beautiful.

I sat down in the cold, but thankfully dry, grass next to Gram’s grave. There were remnants of the dirt from the burial scattered throughout the grass – a dusting that gave the grass a yellowish hue. It was cool outside, maybe fifty degrees, with a breeze and no sun.

I began to open the cards one at a time. I placed each envelope under my shoe beneath my crossed legs so they wouldn’t blow away as I opened each subsequent one. I was sobbing as I read through the beautiful sentiments expressed by the cards and the people who sent them.

“Would you like a cup a tea?” I jumped, startled.
“Oh my God, you scared me.”

“I’m sorry,” the woman said. She was dressed in all-black - blouse, skirt, stockings, and shoes - a self-proclaimed Goth girl, I would soon learn. At first I wondered where she came from as she seemed to appear out of nowhere. I realized she worked at the cemetery office when she repeated, “Would you like a cup of tea while you sit here?” Her voice was soft and compassionate.

“Yes,” I managed to blurt out between sobs.”

“Would you like sugar or cream?”

“No.”

As she walked away, I continued through the cards and I continued to sob. Once finished, I sat quietly, amazed by the support and love I was witnessing and amazed at the life Gram lived. I looked at her headstone. It was propped up using the vase insert, waiting for her end date scroll to be added and for the dirt to settle before being permanently placed. “Well, Ella, what now?” I asked. (Ella was a name I often called Gram in her pre-dementia days. It was a nickname for her real name, Elizabeth.) I waited quietly as if I expected to get an answer.

The young lady returned and brought me a cup of delicious hot tea in a Styrofoam cup. She also brought tissues. “Here, for the tears,” she said.

“Thank you so much for your kindness,” I smiled at her through my tears.

She stooped down, reached back and smoothed her skirt under with her hand and sat in the grass right next to me with her legs bent together on their sides. In addition to her all-black outfit, she had large, round, plastic-framed glasses that were also black. They completely covered her very white face. I commented on her all-black attire, specifically how it seemed appropriate for her job. “People tell me all the time that I look like the Goth girl, Lydia Deetz, from Beetlejuice,” she said. “I love it.”

We sat and we talked for almost an hour. She listened as I talked about my bond with Gram and the large hole that was left in my life. “I know I’ll be ok,” I said, “And I know that hole will eventually fill.”

“It will fill,” she said, “but slowly and over time.”

She spoke of losing her own grandmother and their bond and pain she endured. We told stories about our respective grandmothers. She cried with me. She reassured me that I would be ok.

“What’s your name?” I asked.

“Jennifer.”

“Nice to meet you Jennifer, I’m Mike,” I said, extending my hand to shaker hers.

“It’s nice to meet you, too.”

“You’re so much kinder than your manager,” I said. “She was really nasty the other day.”

“Oh?” she replied, hesitant to go any further. Uh oh, I hope that’s not her mother, I thought, as I dropped the subject.

I stood up. “I have to go.”

“OK.”

“Thank you so much again for your kindness.”

“You’re welcome Mike. Take care.”

I really needed to meet Jennifer, the Goth girl, today. Perhaps that was Gram’s doing.

The Final Journey Part 10 (The Eulogy)

Wednesday October 12

I got up early again. I would prepare for another day, another viewing, lots more emotions. At the end of tonight’s viewing, I would eulogize Gram. I needed to prepare. I’ve always loved talking about Gram – I wanted the whole world to know about her and what she meant to me. That part would be easy; containing my emotions would not.

I drove through the cemetery where Gram would be buried. Pap had purchased four plots back in the 1950’s. They were in the Garden Of The Water Of Life section, which didn’t mean much to me except that they were easy to find. But there was no garden and no fountain. Pap was already buried there and Gram’s sister, Stella. Gram would lie next to Pap and the fourth plot would remain empty and be transferred to Mom with what remained of Gram’s estate.  

I pulled over and stopped the truck as I approached the gravesite. Gram’s bronze marker was standing up, leaning on the vase that would normally slide inside the center hole when the marker was placed in the ground at the base of her grave. It was removed while they dug and left out waiting for the date-of-death scroll to be installed. It was a beautiful but simple marker that she had purchased back in 2009 when she insisted that I take her to pre-plan and pre-pay her funeral and burial.          

The neatly rectangular grave hole was dug and probably had the vault already placed inside. I couldn’t be sure. I was sitting in my truck, unable to get out and look. I didn’t want to see it. I still couldn’t process that Gram would be placed there. After being in my life for 53 years, her death was still surreal to me.

I noticed there was no dirt pile. This was curious to me. Where do they put the dirt? Later, I would learn that they remove the dirt from the area because it’s disrespectful to pile it on other nearby graves.

As I stared at the marker and the hole in the ground, I thought about that day back in 2009 when we ran around and pre-planned her funeral and bought the headstone. Now that she was gone, I was so grateful that we did that. “Thanks, Mum, for taking care of me,” I said out loud in my truck.

I also thought about those moments, over the last days, where I thought perhaps it was starting to sink in – where I was okay with Gram’s passing. In these instances, the fact that I had no regrets, no guilt, and no “I wish I would haves,” further consoled me. But disbelief kept returning and bringing with it despair and sadness. Again, I’d find myself feeling lost, empty, and directionless. I missed her. I didn’t know what my life could be without her. When this is all over, I thought, everyone would go back to their spouses, children, and routines. I, on the other hand, having no spouse or children, would be lost. Gram was my routine. What would I do?

Back at the funeral home, I felt mostly calm at first. Gram was gone, but being in her presence there – even though it was only her body - was still oddly familiar and comforting.

Just like the day before, there were many people who came to pay respects. There were those from ManorCare who cared for her, old friends that I haven’t seen in many years, my writing friends, even my boss. Many never met Gram, but felt like they had from my stories and Facebook posts. “I feel like I knew her,” they’d say.

Of course there were family members, too. Some were distant, some not so distant. And there was Blainey from Carlisle’s and his mother, Betty.

There were so many stories. I loved hearing them all. The room was filled with so much love and laughter – reminders of a life well-lived. That’s how Gram would have wanted it. “Thanks for sharing her with us,” I heard time and time again. The outpouring of love for Gram and support for me over those two days left me overwhelmed with emotion. I was touched.

Saying my last good-bye would be hard. I knew that. The finality would get me. For Gram I was okay with her passing for her sake. After all, she decided it was time. How could I argue that? Any feelings that I was having were for my own sadness, despair, and sense of loss. Gram’s was a life well-lived. The last several days had proved that, especially for the many people she touched in the last five or so years - and she didn’t even know it. For that, I felt good.

As I walked to the casket for my final good-bye, I reassured myself with the idea that Gram made her decision to go, just as I had figured she would. That idea calmed me. “Good bye, Mum, I love you,” I said softly as I stopped momentarily, took a last look at her, and gently touched her hand. “I’ll be OK,” I whispered to her. “You taught me how to.” And I knew I would. As lost as I was feeling, I knew I would eventually be OK. Time and my wonderful memories would make me that way. I just needed to allow it.

Once everyone finished their final good-byes, Peter, the funeral director, had us gather in the large room where the chaplain would lead a brief service. While we gathered, he closed Gram’s casket and wheeled it into that large room. Richard, the chaplain from Heartland Hospice, started off with a few remarks and a prayer and then introduced me for my eulogy. I eulogized Gram by reflecting on the last several days. I cited hers as a life well-lived. I then read a story that I had previously written about her arrival at ManorCare and her miraculous recovery from near death to a long-term, active force to be reckoned with. I sobbed through the whole thing.

                Chaplain Richard led a beautiful sermon where he talked of how Gram served God through her faithfulness as a wife, mother, and grandmother. He spoke of how she also served the staff at ManorCare by giving them the opportunity to live out their vocations as caregivers and to be the best they could be. He spoke of my and Michelle’s faithfulness to her over the years. His reference to Gram as the “Energizer Bunny” brought laughs. Finally, he entrusted her to God’s welcoming, loving embrace and asked God to grant her happiness and peace forever. We prayed.

The service was brief and when it ended, we all said our good-byes to each other and disbursed. Jude and I went to eat. The waffle and hot fudge sundae I consumed at Eat'n Park were much-needed comfort foods. Gram’s solution to emotions was food. This time, I concurred.

I slept well that night, exhausted.

Eulogy:

Anyone who knows me knows that Gram has always been a huge part of my life. I am blessed to have had her as long as I did. I mean, how many people at 53 can say they still have their Gram?

Gram did so much for me throughout my life, so it’s been an honor to care for her. Apparently I’m not the only one who feels that way.

Over the last several days, even before Gram passed, there has been a steady stream of visitors. Staff and fellow-residents stopped by to say good-bye; to say a prayer; to give a small gift; to hug her; to kiss her. There were those who don’t even work at ManorCare anymore, but came to say good-bye.

Among all the visitors, common themes have emerged: First, a story - always a story - funny, and told with smiles and tears. The stories exemplified the personality and specialness of Gram. Words like spitfire, spunky, tough, and determined were interlaced throughout them.

There was expression of deep love, too…and there was gratitude. “Thank you for sharing Gram with us,” is a common sentiment that folks have been expressing over and over again.

Then there’s Gram’s Facebook page. The sharing of love and photos over the last days is overwhelming for me and I can’t even get through all of the posts because the tears are so thick that I can’t see through them.

It’s clearly evident that Gram, even in the throes of her disease, touched many people over the last several years. She didn’t even know it. That is truly a life well lived.

I’m happy to have shared her journey with her. I’m happy for the chance to share her with others.

The Final Journey Part 9 (The Viewing)

Tuesday October 11

Perhaps this was what Gram meant when she said those last coherent words on Wednesday: “I have to get the hell out of here.” Those words kept ringing in my ears all morning Tuesday as I woke up early and got ready for the viewing that would begin at 2 p.m.. I kept asking myself, did she know or were those just random words that turned out to be coincidental? Could this be why she shook her head, “no” when I asked if she wanted to go to the hospital for the transfusion? I’ll never know.

I tried to emotionally prepare myself for the day and evening ahead. I was restless. I felt lost and empty. I was terrified and couldn’t stop trembling.  Although I was fine being alone with Gram’s dead body while still at the nursing home, seeing her in a casket and being in front of loved ones would be different. Real. Final.

I kept busy. For some reason, I had an overwhelming urge to give of Gram – to share her with my family. I began to go through boxes of her things that I had stored in my house since I moved her out of hers. When I emptied her house seven years ago, I packed things hurriedly in an attempt to avoid realizing the emotional impact of what I was actually doing. I went into “task mode,“ whereby I did what I needed to do without allowing emotions. Many of her things I had since unpacked and either given away or sold – any proceeds going to what would become her assisted living fund. Other things – those more personal, such as boxes of knick-knacks and items from her bedroom, framed pictures I took from the walls and dressers, and even some kitchen items, I couldn’t bear to unpack back then. It just didn’t feel right. Now, today, it felt right.

I discovered items that I had forgotten existed. Memories of Gram and all the years in that house came flooding back. I had placed the items in the boxes systematically based on location back then and that made it easy now for me to remember exactly where each item was in her house – how things were arranged on the furniture, how pictures were hung on the wall, how pots were stacked in the cupboards. There was clothing, too. I had kept some of her clothing at my house as it was too much for the nursing home. 

I thought of my family – my nieces, Gram’s great granddaughters, mostly. They were the youngest and knew Gram the least. I wanted them to have something – something that might prompt a story or a question or even a memory. I thought of my sisters, too, and Mom and Jude. I wanted to give each of them something and this was a good day to do it, knowing we would all be together. Tara and her daughters, Olivia and Bella, live in Virginia and I didn’t know when I might see them again. I found a dainty, embroidered kerchief that I gave to Aubrey. I found Gram’s wind up musical dog statuette that she bought because it resembled Bobo, the Bichon Frise and Poodle mix that drove us all crazy for years. I gave that to Bella. There was another kerchief for Olivia. There were sweatshirts and sweaters that I would give away – either to those who bought them or anyone who wanted them. There was a Steeler sweatshirt that Jude bought. Heather took that. There were her gloves and a colorful, nylon headscarf that Gram wore with her red winter coat. There was a photo collage that Michelle had made for Gram’s wall at Elmcroft. And there was the bright orange pumpkin sweatshirt that Jude bought. It had the face of a Jack-O-Lantern - triangle eyes and nose, and a serrated mouth. I loved when Gram wore this sweatshirt at Halloween. I called her my Great Pumpkin. I gave the sweatshirt to Jude.


I packed the items for the kids into small boxes and put them into the back of my car along with everything else. I would hand them out when everyone was together at the funeral home.

We had all agreed to all arrive at the funeral home by 1:30 p.m. That would give us thirty minutes as a family to do our private viewing before it was opened to the public.

I had several stops to make before then. I needed new pants for the viewing. I headed out toward Gibsonia. I knew I could hit Kohl’s there. I also needed to stop at the credit union and while there, I would ask about the process of closing Gram’s account when that time came. I would stop to see her old doctor, Ginny Balderston, too, whose office was right across the street from the credit union. Dr. Balderston wasn’t available to talk when I stopped in, but the staff was kind and sympathetic and agreed to pass the information on. Dr. Balderston would call me later that evening to express her condolences. 

Since Gram’s old house was right behind the doctor’s office, I drove by it, too. Actually, I parked in the lot across the street and just sat and reminisced for a few quiet minutes. I allowed the rush of forty plus years of memories to overcome me for those few minutes. I bawled, then I had to go.

I went back home, showered, and got ready to go to the viewing. I would stop at Carlisle’s Bridal Shop on the way to the funeral home. After many years on the North Side, the owners had recently located the shop to McKnight Road. Gram had retired more than 20 years ago, but if there was anyone still working there who knew her, I wanted to tell them of her passing. Over the years, I had emailed Blaine Workman, who was the owner, Betty Workman’s, son, about Gram's condition. Gram always liked “Blainey." Those times and now this time, Blaine responded graciously and with true love and concern.

“Can I help you?” I heard as I walked into Carlisle’s. The woman’s voice sang the words in a necessarily loud way due to the almost acoustic nature of the racks of gowns that filled the showroom. I couldn’t see her at first. I only heard her friendly voice. There were a lot of mirrors in the place, which explained why she saw me before I saw her.
“Hi, I’m Elizabeth Berberich’s grandson,” I began. She walked toward me as I explained how Gram worked for Carlisle’s on the North Side for forty years and how she had passed away a day earlier.

                “I wondered if anyone who knew her still works here.”

                “I’ve been here thirty years,” the woman looked at me, perplexed. “I don’t remember her.”

                “Oh. Ok. Well, I’ll just write down the details of her viewing and leave it here in case there is anyone who might know her.”

                “Ok, thanks. I’ll make sure I post it here at the desk where everyone can see it.”

                As I finished writing and turned to walk out, the woman threw her arms up in the air, “Are you talking about Betty? Betty Berberich?!”

                “Yes.” (I had forgotten that her colleagues at Carlisle’s knew her as Betty, not Elizabeth.)

                “Oh, I remember Betty! I worked with her for years! I’m so sorry to hear.”

                “Thank you.”

                “Oh, I could tell some stories! She said in a way that spoke directly to the mischievous and sometimes crazy character that Gram so often was. “She was a spitfire.” She smiled a wide smile. “I’m Charlene.”

                Over the next two days, I would hear the phrase, “I could tell some stories” many times. It was always accompanied with a smile. And with each time, I would smile knowing that so many people shared memories of Gram.

I arrived at funeral home early – around 1:15 p.m. My family would arrive by 1:30 p.m. My arms were loaded full of things: the small jar containing a portion of Chubb’s ashes, the small urn that contained Bobo’s ashes (Gram wanted Chubbs and Bobo buried with her.), some photo albums that Michelle had made over the years that I grabbed as I left my house. These albums were beautiful and perfect to share at this time. They were loaded with photos from Gram’s 80^th and 90^th birthday parties among others. I also had my laptop and bag full of paperwork in case I needed if for the funeral home "business."

As I walked in through the characteristically somber and quiet entryway toward the viewing room where Gram was, a heavyset woman in a “mourning-appropriate”, all-black, one-piece dress and dark-rimmed glasses approached me. “Hi, can I help you with those things?” I don’t even know if I responded as I turned and dumped the things from my arms into hers. I was focused on and cautiously walking toward Gram. “I’m ______. You may remember me from Ogrodnik’s. I used to work there.” She followed me toward the viewing room.
“Oh OK,” I replied, distracted and very nervous – afraid of how I was going to react to seeing Gram there. I was too much of a wreck to even note her name, but I did notice the nameplate above the viewing room that said, “Elizabeth ‘Gram’ Berberich.” “Gram" had become her namesake these last several years, so it was appropriate.
“I remember her,” she continued, as we approached Gram, who looked so beautiful lying in that casket. “I took care of her son when he passed.”
“Oh yes,” I said. I was longing just to be alone with Gram.
“OK, let me know if you need anything.”
“Thank you.”

Gram did look beautiful in that casket – at least to me. Her new red sweater stood out over the perfectly pressed white blouse that I had previously obsessed over. Her hair looked better than it had in months. Her hands were peacefully folded over her abdomen in the typical way. But she was thin, frail, and tiny. Her face showed the weight loss now more than ever. I could tell by the irregular lines at the corners of her mouth and the slight distortion that they had broken her jaw to get it closed. I sobbed uncontrollably. My knees trembled and wanted to collapse my body. The kind, heavyset woman, whose name I had already forgotten, turned back and came to me. She hugged and comforted me. I don’t remember what words came out of my mouth while I sobbed. I was hyperventilating. It was probably fifteen minutes before I was calm enough to speak clearly.

I walked outside to find my family arriving. We all walked in together and each proceeded to the casket to pay their respects.

Later, I asked them to come outside as I had some things to give them. We stood together in a circle at the back of my car with the hatchback open. Once again, I was sobbing as I reached for the little boxes I had packed so carefully for the girls. I handed them gently to the girls as I explained why I wanted to give that item to them. Then I proceeded through sweaters and sweatshirts and pictures. We were all sobbing by the time I finished.

I’m not sure why I was driven to give those things away that day. The urge to give of Gram was strong, no doubt, but there was perhaps another reason, too. I was compelled to finish my “job;” to be the good grandson and make Gram proud of me one last time for doing it well. I had been the dutiful Grandson; the good steward. And don’t misunderstand me, I loved every minute of it, was honored to do it, and never for one minute resented it. But now, I wanted to wrap it up - the “stuff,” the paperwork, all of it – neatly, well-organized, and put away – for Gram and for me. I wanted to be left with just my lifetime of memories. Gram used to say, “Finish what you start, Mikey.” Wrapping these things up would be a testament to what she taught me about caregiving. She was the expert, after all.

Much of that day and evening at the funeral home is lost from my memory, overshadowed by emotions. I remember, however, the outpouring of love and sympathy throughout the day. And there were many visitors - staff from ManorCare, friends that I haven’t seen in years – some didn’t even know Gram. “I feel like I know her.” Of course, there were family members. I loved hearing all the stories. There was so much love and laughter – reminders of a life well lived.

At home that evening, I finished the last of Gram’s laundry and neatly folded and packed it away to donate to ManorCare. I kept a sweater and pair of pajamas for myself. I wanted to remember her scent and have it when I missed her. That scent that was so familiar for so long. I didn’t ever want to forget it.

I found a rusty old nail in the washer. I laughed out loud and shook my head as I picked it out. I never knew what I would find when I did Gram’s laundry. She picked up so many things in her travels at ManorCare. A nail was only par for the course. I smiled as I picked it up and held it between my fingers. I reminisced for what seemed like 10 minutes. I will keep this nail forever.

The Final Journey Part 8 (The Passing)

Monday October 10

“Michael? This is Sandy from ManorCare….Gram passed.” Her voice was sympathetic but professional. For all these years, I dreaded getting this call. In fact, every time I got a call from ManorCare during the night, I thought it was this call. But this morning – this time- I knew what it was. There was no dread; I expected it. It was why I had placed the phone right next to my head when I went to bed. I was oddly calm but I’m sure I sounded as deflated as I felt. “Sigh. OK. I’ll be right there.”

I don’t remember if I even showered before I left the house. I don’t remember being in a hurry. There was no point now, except I wanted to get there before anyone else. I wanted some quiet time with Gram before the commotion with hospice, family, and funeral began.  I longed for a few quiet moments as I knew my life was going to get very busy coordinating things and very emotional dealing with it all.

I walked down that long hall to Gram’s room like a zombie. I was completely oblivious to what was going around me. It was as if I was walking through a dark tunnel with no visibility, but somehow knew where I was going. I heard nothing; I saw nothing. It was as if the place was completely empty and everything was still. I only heard my own heart beating intensely in my ears. My breathing was short and quick with anticipatory anxiety.

The door to room 141 was closed, of course. I walked in slowly, turned, and closed it behind me. Gram’s body was still slightly warm. Her mouth was so wide open that it looked like someone pried it that way. The first thing I did was try to close it, but it was too stiff. I couldn’t budge it.

The bright sun was shining in the window and it draped across Gram’s lifeless body, which now was grayish in color. I touched her arm and hand. I instinctively felt for a pulse. I kissed her cheek and forehead. I pushed her hair back behind her ears as I spoke softly to her. I expressed my disappointment that she wouldn’t let me be there when she left. “I understand, though," I said. “You’ve always protected me.” I said good-by, I reassured her that I’d be OK. I thanked her for teaching me how to be OK. I thanked her for everything she had done for me. “I’ll be sad; I’ll be lost for a while,” I said. “But you’ll always be with me – in my heart…I’ll take good care of Teddy, too. You’ll be with Chubbs now. Send him my love... and Bobo... I love you.”

I sat quietly like this with Gram for about an hour before I called the hospice liaison to send the nurse. I had contacted Michelle earlier and she, too, was on her way. As I waited, I realized that this would be my last time in room 141 – or it should be anyway. So I began cleaning things out. I gathered the few things that I wanted and decided to leave most other things – Gram’s clothes and TV – at the facility as donations to other patients who might need them.

I went about removing clothes from the closet and drawers in the same matter-of-fact way I always put them away if Gram was in her bed when I brought her clean laundry. I organized and folded them by placing them all over her body and bed. During the course of Gram’s illness, it was always important to me that I be matter-of-fact and go about business as usual. I believe this put her at ease. I had to do it now, too.

I was grateful to have this last quiet alone time with Gram. Even though she was dead, her room seemed full of life. Perhaps it was because of the flood of wonderful memories that passed through me while I was there with her.

When the hospice nurse arrived, she asked me for the name of the funeral home to contact. Gram had pre-paid with Ogrodnik’s back in 2008. She had asked me to take her to do it. She was wary back then to pre-pay, though. “What happens to my money if you go out of business?” I remember her asking the funeral director.
“The money is put in a separate investment fund and is technically independent of any funeral home. It can be used anywhere. But you don’t have to worry. We’re not going out of business. People are always going to die, right?”

Ogrodnik’s went out of business just the week before Gram died. “We’ve been in the process of sending letters to all of our pre-need clients,” The guy on the other end of the phone said to me after the nurse handed it over.
“You are kidding me,” I said, almost chuckling as I remembered that conversation back then.  Gram was right for being wary, I thought. They were able to suggest another funeral home in the Dignity network – H.P. Brandt. It was actually a better location with ample parking. Michelle and I planned to meet there at 1 p.m. to discuss the arrangements.

By the time the funeral home representatives arrived to take Gram’s body, I had packed up all of her clothes and belongings. Although I know would come back to the facility in the future to visit, I didn’t want to come back to room 141. At the very least, I didn’t want to have to come back and pack up her things. This way, when they arrived to take her body, Michelle and I were able to leave, knowing that part was done. I took pictures of Gram’s room as we walked out. I wanted to remember it.

I went home after leaving ManorCare. I felt empty. Never before had I felt like such a huge part of me was gone. I knew now what people mean when they say that upon losing someone. I immediately got busy. I had a couple loads of Gram’s laundry that needed done. I would finish that and donate it to ManorCare at some future date. I pressed the new blouse I bought for Gram to be buried in. I wanted it to be perfect. While pressing it, I remembered how Gram taught me to press my own shirts. “Here Mikey, let me do it,” was usually how that ended up. It was a sweet memory and I got so lost in it that I grabbed the hot iron and burned the hell out of my finger.

In the meantime, Michelle went shopping for a red sweater. Gram had told Tara that she wanted buried in the red blazer that her son, Chubby bought her many years ago. We had no idea where the blazer ended up and we knew it wouldn’t fit her anyway, so we decided a red sweater was appropriate, especially since she wore sweaters a lot over the last several years. She could always be seen in one, since she was always cold. We had grabbed a couple purple sweaters from Gram’s room to take to the funeral home just in case Michelle couldn’t find a red one. Gram always looked good in purple.

At the funeral home, I was amazed how technology had infiltrated even funeral planning. Peter, the funeral director sat across from us at the table in what I would call the “showroom.” There were caskets on display and urns on shelves and marketing materials for the many things you could purchase to memorialize your loved one, including a pendant with a fingerprint imprinted upon it. On the wall was a large flat screen TV. Peter walked us through the “wizard” of funeral planning on the screen as he reviewed Gram’s pre-need - now at-need - selections. “Most everything is still good,” Peter explained, “But I want to review things with you.” He did. The casket Gram originally chose was no longer available, but they were able to find a comparable replacement. And there was the question of flowers. “How do you want to handle flowers?” We didn’t know. I did know that Gram always felt cut flowers were a waste. I sent her roses for Mother’s Day once and she said, “These are nice Mikey, but why did you waste your money? They’re only going to die.” Peter suggested live plants that could be given to family members at the end of the viewing. Michelle and I agreed upon Mums. They were perfect because they were fall flowers and abundant right now. Plus, for many years, Gram was known to everyone as “Mum.” It was a perfect choice.

I handed Peter the white blouse I had bought and pressed. “Please touch this up,” I asked. “It must be perfect. Gram was a presser. She wouldn’t tolerate any wrinkles.” Peter graciously and gently obliged with a nod. Michelle also brought a couple different red sweaters she bought. We chose the one we thought would be perfect.

I can’t say that I was fully present during all of the discussions regarding the arrangements. For that reason, I was so grateful that Gram had asked me to take her to pre-plan and pre-pay everything all those years ago. Back then she even bought her headstone. All we had to do was commission the scroll that would contain her date of death. It was already paid for; it just had to be placed. The funeral home would handle this, too. Gram really took good care of me.
Michelle had talked with Tara and they were on their way up from Virginia. They would arrive Monday night. We would all plan to meet at the funeral home Tuesday at 1:30 p.m. for a private family viewing before opening to the public.

When I arrived back home, I wanted to be alone. I didn’t want to talk to anyone.

I posted the following on Gram’s Facebook page: At approximately 4:45 this morning, Gram peacefully succumbed to her disease. We are so grateful for the love and kindness Gram experienced in her last years.

I slept well that night.

The Final Journey Part 7 (Peace and Love)

Sunday October 9

I arrived early in the morning again on Sunday. Gram was resting peacefully now; her breathing was still heavy and deep, but that was characteristic of her when she slept. She always slept with her mouth wide open, too, but today there was a stiffness about it – as if it was stuck that way – like she couldn’t close it if she tried. The end was drawing near. I knew this. And at this moment, more than ever, I found myself drawn to her just as I was as a child – longing to be close to her for comfort and strength. It was ironic that someone who was now in such a vulnerable state could still provide me that same comfort and strength she always did. But it was her true essence – her soul or spirit, more so, that provided me with what I needed now, not her physical presence. Her essence was still very much here and that bond - that ever so amazing bond we shared - drew me to her. It did now as it did all those years ago being a troubled child growing up in a crazy household. Whether it was fear of a nightmare, a monster under my bed, or thunder, she was always there to comfort and reassure me. It’s an untouchable but real force.

I can’t remember exactly who worked what shifts that day at ManorCare, but I know at some point, Tracy was Gram’s nurse. I didn’t know Tracy well, but she knew Gram of course - everyone did. I had talked to her on the phone a few times over the years when Gram fell, injured herself, or got mixed up in some type of trouble. What I do remember is that day was filled with lots of kindness and compassion, much of which came from Tracy. She was very kind and attentive.

Throughout the day, too, just like the day before, there were visitors – other staff members and residents, paying respects, saying good-bye. There was even one young lady, Resa, who no longer worked at ManorCare, but wanted to come and say good-bye. “I took care of her for two years. Of course I wanted to say good-bye.” 

I sat with Gram all morning. It was peaceful and calm and quiet in room 141. Nurses and aides came in throughout the morning to check on Gram and me. They asked if I needed anything and once again, wheeled in a cart full of drinks and snacks.  

I found solace in the quiet of the room and the perfect rhythm of Gram’s breathing. It relaxed me and allowed my mind to wander. Memories flooded my mind and images of my life with Gram flashed before me as I took an emotional journey backward. Some memories made me smile and others made me cry, but they all made me thankful – thankful to have known Gram and thankful to have been a part of her life.

I recalled Friday night at the hospital and remembered how making the decision to not proceed with the transfusion made me oddly calm and at peace with things. I still was. I knew now that I was losing Gram and I was ok with that for her sake. I knew I had done right by always her by putting her first, considering what was best for her, and doing my best to represent and advocate for her when she couldn’t. I had no guilt; no regrets. I did, however, have deep sadness.

What I wasn’t at peace with, however, was what would happen to me after. I had never been able to imagine my life without Gram and soon I would be living that life. What would become of me? What will I spend my time doing? I hadn’t allowed myself much time on these thoughts because it hurt to do so. Furthermore, I needed to be present for Gram. I wanted to experience every moment of this process with her and not miss a thing. I knew I’d be OK, though; Gram taught me how. I’d be sad and lost for a while; I’d have to take things one day at time. But notwithstanding my need to focus now, I couldn’t deny that the strong, brave, front I was putting up for Gram was being challenged constantly by underlying emotions regarding my future. They pinged at me and despite my best efforts to fight them, would unexpectedly surface at times and I’d find myself sobbing. I cried a lot that week.

I left ManorCare around lunch time. Gram was despondent and appeared unconscious as she had been since Saturday. I needed to buy her a new long-sleeved, white, button-down blouse for her viewing and I became driven to do so. I wanted her to be in white and it had to be crisply pressed. Being a presser by trade, she wouldn’t have it any other way. Even at home, she always pressed her blouses and looked neat. In my search, I went to Kmart, Target, Kohl’s, and Walmart before finally finding what I wanted – the perfect blouse. I took it home and washed it (Gram always said you should wash new clothes before wearing them.) I would press it tomorrow.

When I returned around 3 p.m., Tracy stopped me and called me to the nurse’s station. “We were trying to get a hold of you. If there are other family members you want to have here, you may want to call them.” I already knew what was happening, but hearing this made it, again, very real.

Gram’s blood pressure had been dropping and her pulse increasing. Throughout the afternoon, her breathing had slowed and become shallow and erratic. Between each breath, there was a 15-20 second pause.  For some odd reason, I recorded Gram’s vitals throughout the morning.

10:15 am: Blood pressure 80/40, pulse 116

11:30 am: Blood pressure 103/50, pulse 99

I contacted the family. Michelle came over right away. Paul, Aubrey, and Andrew came later. I suggested that Heather and Mom not come because they had a long drive and at that point, I didn’t think they’d make it before Gram died.

We all sat together and we waited.

At 9 p.m., Gram’s blood pressure had dropped to 60/30 and her pulse was 114. And at 10 p.m., it was around the same. Her blood oxygen had dropped to 86%, despite the concentrator. The nurse turned up the oxygen, knowing that it would make us feel better.

Sandy, the night shift nurse came into the room, introduced herself, and immediately asked if we needed anything. We didn’t. “We’re going to take good care of Gramma,” she said.
“Thank you,” I replied, welling up with tears. (The expression of love and compassion that I experienced from the staff at ManorCare touched me in a way that I was often brought to tears. “You do God’s work,” I’ve often said to them.

Michelle and her family left after 11 p.m.. “You should go, too, Mike,” Michelle suggested.
“I’m not going yet. I’ve been with her for this whole journey and I want to see her through to the end.”

After Michelle left, I sat next to Gram’s bed, which was slightly raised at the head. In that position, I was able to somewhat comfortably rest my head on the bed next to hers, while sitting in the chair next to her. Gram’s breathing was very slow now. Every inhale was long and slow and after each, there was a long delay. I anticipated every corresponding exhale and wondered if it would be the last. I tried to sleep a little, but couldn’t. I dozed off, but quickly awakened. I didn’t want to miss the end. This went on for the next few hours. Periodically, I’d check Gram’s fingers and toes and they had become cold, and bluish in color. Sandy was in and out administering the meds and checking on her, too.
Around 2 a.m., as Sandy was giving Gram her meds, I raised my head from the bed to hear her say, “Her breathing has stabilized.” I looked at Sandy in a confused and surprised way, but realized as I listened that she was right. I had been told by hospice nurses before that often the dying don’t want to die in front of their loved ones. I know this was the case with Chubb’s when he waited for Michelle to leave and within minutes took his last breath. I didn’t expect it with Gram. But then again, she always protected me.
I looked at Sandy and back at Gram, who, just as Sandy said, was breathing normally – as if she were sleeping in her normal way. “I think I’m going to go,” I said immediately as I realized what was happening. “I don’t think she wants me here.” I believed even now, Gram was protecting me. I gathered up my things, dimmed the light in Gram’s room, and left.

When I got home, I logged into my computer and there on Gram’s Facebook page, was a lovely, touching tribute: Tracy had posted a photo of several of the ManorCare staff members conducting a toast using a caffeine drink – the same drinks that Gram loved to steal from them. The caption said, “Cheers to Gram Berberich. We love you!”

I wept.

The Final Journey Part 6 (The Long Goodbye)

Saturday October 8

The walk through the front door, into the elevator, and down the hall to room 141 was particularly long this Saturday morning. I wanted to get there quickly, but at the same time, was terrified for what I was going to find. I was still reeling from the anger over the hospital keeping Gram waiting over twelve hours for an ambulance to bring her back and then releasing her without calling me. My emotions were piqued.

Two women staff members saw me as I walked into Gram’s room. Gram was lying in her bed in the same fetal position she was the night before at the hospital. Her eyes were still half open and pasty. Her breathing was deep and heavy. She was wearing only a hospital gown and a diaper, which was exposed because the blankets were partially pulled off.  Did they just toss her there? As I moved to cover her, the two staff members walked in and quickly took over. I didn’t know these two women well, but they sure knew Gram. They were night staff, I surmised. They took control of the situation with a sweet gentleness and conviction that touched me to tears. I stepped out of their way, “Let’s get her into her PJ’s,” one said, more to the other than to me, as they frantically and dutifully positioned Gram to change her. 
“Gramma isn’t Gramma without her PJ’s,” the other said. I left the room to allow them privacy. 
As I walked out, I heard one of them say, “We can’t have her like this, Gramma runs this place.” Even teary-eyed, I couldn’t help but to chuckle under my breath.

Shortly after the two women left the room, the ManorCare nurse came to check on Gram and took her vitals. She asked if I needed anything. “No, thank you.” I said. Gram looked so much warmer and comfortable once she was in her PJ’s. Those women were right; she needed to be in those PJ’s.

Michelle came shortly after I arrived and we sat with Gram throughout the early morning. We reminisced. We laughed. We sat quietly at times. We were sad and there were moments of tears. There was disbelief – lots of disbelief – this was all happening so quickly. But this time with Michelle and Gram was special to me. Through these years of Gram’s illness, it had been the three of us. So it was appropriate that it was the three of us now.

As the morning went on, Gram became increasingly restless. I grew impatient waiting for the hospice nurse, Tonya, because, as brave as I was trying to be, the restlessness was difficult to watch. I felt helpless. The random arm movements weren’t as bad as the grasping and rubbing of her head she kept doing with one or both hands. It was similar to what one might do when suffering from a severe migraine. I didn’t want to think she was in pain – I couldn’t bear it. I’ve experienced migraines and I know that pain well. I didn’t want to think it.

Gram was repeatedly grasping the edge of the blanket, too. As I watched her do this, I flashed back to childhood when I used to do a similar thing. I got comfort from the nylon ribbon they used to put on the edge of blankets - its cool softness was soothing and felt good between my fingers, on my face, and on the tops of my feet. I would bunch it up in my hands and rub it against my face. I would position my feet in such a way that that nylon would slide across the tops of them. It calmed me and at the same time distracted me from the bad thoughts. Now, I was hoping it was doing the same for Gram.

I knew once Tonya arrived, she would get Gram started on Morphine and Ativan. The Ativan would help with the restlessness and the Morphine with pain, if she was having pain. When she did finally arrive around 11:00 am, shortly after Michelle left, she quickly ordered both medications.

Within a couple of hours, the meds arrived. Once they did, though, someone dropped the bottle of Ativan and it broke and spilled all over the floor. The original pharmacy didn’t have any more so they had to seek out another one. In the meantime, they began administering the Morphine, but it only calmed Gram slightly - mainly because it put her to sleep. It was something, though, while we waited for the Ativan, and I was thankful for it.

In the meantime, Mom and my brother, Bill, and sister, Heather, and her boys, Kody and Zach, arrived around noon right after Michelle left. Jude came later, too. I was happy to see Bill come. Bill is my oldest brother and losing Gram was going to be at least as difficult for him as it was for me, probably more. Over the years, Bill couldn’t seem to handle Gram’s disease and slow decline very well, so he didn’t come around much. Over the last few years, though, he had bravely begun to come for our holiday gatherings and I was happy for that. Bill was Gram’s real favorite, even though most assume I was. I had no issues with their relationship, at least since I became an adult. They had a very special bond. And now, more than ever, Bill needed his time with Gram - his chance to say good-bye. Gram did, too. She always worried about Bill and loved him deeply.

The Ativan finally arrived around 3 p.m,. The nurse began administering it immediately, but the effect was not immediate. I expected it would take a couple doses to establish the proper amount and get it built up in Gram’s system before we’d see the results.

Throughout the day, most of the entire family would make their way to see Gram. Jude, Mom, Bill, Heather, Kody, and Zach, came early. Later, my sister Michelle, her husband, Paul, and their kids, Andrew and Aubrey, would also come. Additionally, there was a steady stream of staff and other residents who stopped by Gram’s room throughout the day to express well wishes, say goodbye, and offer a prayer, a story, or even a gift. Cynthia, a resident, offered a page from a coloring book she colored specifically for Gram. It was accompanied by a letter she wrote. “I heard you’re getting ready to break my heart,” the letter started out. “…Believe me they’ll be a lot of others, too. Everyone loves you so much. Like the beautiful blue skies open up to you. I love you honey. You earned your peace and are saved by grace.” Cynthia cried when we told her of Gram’s condition. Kevin, another resident, came by and asked the family to join as he said prayer for Gram and for us.

As each shift ended, staff members finishing the shift came to say goodbye to Gram. They didn’t know if she’d still be there for their next shift. Some of those moments were more poignant than others, such as when Chris, the tall, young aide, who always took such good care of Gram, came in, got down on his knees beside her bed, lowered his head next to hers, kissed her, and said, “I love you Grammy.” I tried to hold back the tears, but could not. How nice that Gram was surrounded by such love.

As I sat at her bedside throughout the day, there were times that Gram would reach for and grab my hand, pull it toward her, run her hand up my forearm and back down, and then squeeze my hand. Then she’d push it away and repeat the process. Once again I was taken back to my childhood, to her comforting me during the nightmares I used to have. I hoped, now, I was doing for her what she did for me back then. She provided me great comfort during those scary times as a kid.

Heather, Mom, Bill, and the boys left around 5:30 p.m.. Gram hadn’t opened her eyes at all Saturday, but when Bill leaned over to say good-bye, she opened them. She only did it for him and he spoke of it as he walked out, “I think she was trying to say something to me.” Perhaps she wanted to see his face one last time. She didn’t see him often. Perhaps she was saying, "I love you."  

Jude stayed with me well into the evening. She was a huge support for me and I was glad she stayed. Michelle came back minutes after Mom and Heather left. Paul, Aubrey, and Andrew came later. Gram was still somewhat restless when they arrived and Aubrey and Andrew were concerned. I didn’t tell them what happened to delay the Ativan, as I didn’t want to further upset them. By now, the Ativan had helped some, but it hadn’t reached its full effect. Aubrey and Andrew also expressed concerns about Gram’s breathing. It appeared belabored. Her mouth was wide open, as it always was when she slept, but today, that aided in the appearance of a struggle. Tonya told me earlier that she was not struggling to breathe but it was typical for families to think otherwise. Nevertheless, we expressed our concerns to the ManorCare nurse, who, without hesitation, brought oxygen. Tonya may have been right. It didn’t seem to ease Gram’s breathing at all. We felt better though.

Again, we sat and reminisced. We told funny stories. We sat quietly. We wondered. Again, there was disbelief. I mean, just four days earlier, she was still wheeling around. She had just said to me Wednesday night, “I have to get the hell out of here.” Although her words were disjointed Wednesday, she still had some of that characteristic spunk that endeared her to so many. But now, she lay lifeless. None of us knew what was going on in her head. I only hoped it was peaceful preparation for her transition. I hoped that those she loved that had gone before her were reaching out to assist with her journey.

I learned that evening what NPO meant and it was a harsh lesson in reality. I was asked about Gram being NPO. I Googled it: NPO is short for the Latin, nil per os, which means ‘nothing through the mouth.’ I knew Gram hadn’t urinated or had a bowel movement in at least 24 hours and I knew she wouldn’t and now, couldn’t, eat, but hearing NPO and learning what it meant made the finality of things painfully real – this was the end.

I also experienced first-hand what I had hoped I never would, but nevertheless had read about. That is, how often Alzheimer’s patients die of starvation because they lose the ability to swallow. I believe it’s called Dysphagia. Gram was starving to death as we watched and she had been over the last months – slowly, but definitely. But today, as the nurse, Ang came to administer the meds from the oral syringes, I understood well what losing the ability to swallow meant in the final stages of this disease. And it was horrifying to watch. The medication was to be placed under Gram’s tongue and absorbed there. Naturally, though, some drops would dribble down her throat, which by now was so dry and brown that the tissue and dried, pasty saliva looked like stalactites hanging from a dark cave. When some of the medication hit Gram’s throat, she would immediately go into a spasm - mouth wide open, shoulders tensing, head bobbing forward, in a clear struggle to swallow. It looked as if it was purely reflexive and without all the muscles actually working to push those few drops down. This seemingly automatic, but not actually functioning, attempt by her body only caused her to gag and let out strained and raspy, weak, shrieking noises that originated from deep in the back of her throat. I’d place my hand on her back and lift her to an upright sitting position as I rubbed her back and neck in an effort to help. As I looked over to Ang who was sitting across the bed from me, I could see the big tears in her eyes that spoke to the helplessness that we were both feeling at that moment. It would only end once the drops were able to finally pass beyond Gram’s throat on their own. By Sunday, these moments had stopped, thankfully. They were the most difficult part of the whole dying process to watch.

Later in the evening, after Jude left and when Michelle and her family left, I left too. I had to go home and take care of my dogs. Gram was resting more comfortably.

By the time I returned later that night, the meds had fully kicked in and Gram was resting peacefully. It was probably after 9 p.m. when I walked into Gram’s room. I found Stefanie and Monica, two of Gram’s favorite aides, sitting with her. They had cleaned her up and finally got her positioned from fetal to lying on her back. Her arms were no longer moving; rather they were resting over the blanket that was neatly folded and covered her to her waist. She looked peaceful. Her mouth, of course, was wide open.

Stefanie and Monica have always loved and taken such good care of Gram, so those quiet moments of them sitting with her when I arrived, were some of the most poignant that I will remember.  The room was dimly lit, which provided a softness and solemnness to the experience.  They were sitting quietly. And when they spoke, they spoke softly as if not to wake Gram. “This place won’t be the same without her,” Monica said.
“No, it won’t, “added Stefanie. I was profoundly touched.

Tonya came back, too, to check on Gram. Tonya explained what Gram had been experiencing earlier. “It’s called terminal restlessness,” she said, describing the restlessness – the flailing of the arms and rubbing of her head that Gram had been doing incessantly until the medications fully kicked in. “It doesn’t mean anything,” she went on, “They’re just random movements that people experience when they are dying.” She reassured me again that Gram was not struggling to breath or having pain. It was probably due to delirium from the dehydration and severe anemia she was experiencing along with her organs shutting down. Tonya looked at the oxygen concentrator next to Gram’s bed. “Oxygen is for the families.”

Friday was a day of gut-wrenching day of decision-making. Saturday was a day of settling and acceptance, peacefulness, and good-byes. By the end of Saturday, Gram was finally resting and peaceful. Hospice was engaged and providing comfort measures. Sunday would be about waiting.