Tranquility at Kennesaw Mountain
"Life is a journey; Death is one too".
When I was a teenager in high school, I converted from Greek Orthodox to Roman Catholic to attend church because there was no Greek Orthodox Church in or near the town where I lived. I don't recall exactly why, but I felt I needed to attend church. Maybe it was from attending all the funerals I went to for a part-time job I had working at a funeral home. During funerals, it seemed that families came together and went to church and that seemed to provide peace to them. As I progressed through life, I questioned the existence of God and the afterlife, wanting to believe in both because it seemed that I should believe or that I had to believe because I was Catholic and that's what good Catholics believed. But the truth was that I didn't know for sure. Today, I don't consider myself to be "religious" or even overly "spiritual". But I do think about many things and have questions including "Why do we exist?", "When will we die?", and "Is there an afterlife?, and "What is that like? I've wondered about my purpose in life (am I here to do something meaningful?) like I am sure many others wonder as well. I've wondered if life is a series of unrelated events or whether the events all relate somehow and mean something that we are not able to understand. I've wondered how those I know are affected by me (if at all) and how they affect me. I've also always wondered, especially recently, about whether someone or something visits you before you are about to die. I've thought that, if so, this person or entity would help you transition from the living world to the afterlife... Sort of a guide to you during your last days on the planet and someone who provides you the information you need about the "next steps".
My mother passed away on March 19th, 2013 in the care of a community Hospice in Marietta, Georgia, while me and my three siblings watched her very comfortably and peacefully take her last breaths of life. Prior to this, throughout my own life, I had sometimes thought of what the loss of my mother would be like. Despite when I had these thoughts, I expected the worst. It made me incredibly sad to think that someday I would be without the primary person in my life whom I've known my entire life... The person who gave me life and who cared and guided me throughout it. Even though me and my siblings had our share of difficulties over the decades with our strong and strong-willed, many times seemingly compassionless mother, it seemed almost unbearable to imagine the loss of her, simply because she had always been there. In reality, my mother's death was nothing what I anticipated. In fact, for the most part, it and the days preceding it were virtually the exact opposite of what I expected. There were things that happened during the final days of her life that I would have never been able to imagine. Those things included questions and answers about her death and the afterlife including an answer to the question about that visitor before death.
This story is about those final days of my beautiful mother's life. It is true. I recognize my limitations for the most part--I'm not smart or creative enough to have made up such a perfect story. What amazes me is how I was able to piece together the puzzle of information I was provided during my mom's final week to understand and to receive and share what I now recognize as the greatest gifts ever. I don't think that I did this without some help from a higher being. But I do think and know that what I was fortunate enough to discover has comforted me, defined my destiny, and brought me a peace in my life that I had never known before. My hope is that I can share that peace with my family and provide hope to others who are seeking the same peace.
On Tuesday morning sitting at my desk at work in Maryland, I heard the familiar "chime" on my iPhone. It was the second text message that morning from my sister Lori who flew down to Georgia yesterday from Pennsylvania to visit our mother who recently became ill. After the stroke four years ago, my mother, now age eighty-six, moved from Pennsylvania to Georgia at the insistence of my younger brother John and older sister Regina, both of whom were transplants to the Atlanta metropolitan area from Pennsylvania. As of the past Friday, Regina took Mom from the latest assisted living place where she lived to the Kennestone Memorial Hospital with what first appeared to be symptoms of the flu or maybe a C. Diff. Infection. This diagnosis later changed over the weekend to gall stones and then to a possible bad gall bladder that might fairly easily be removed and then, following the results of an MRI, to an aggressive cancerous tumor inside the bile duct completely blocking the passage of bile from the liver to the intestines. This problem, which shocked all of us since it was so unexpected, so sudden, caused a fairly significant case of jaundice in our mother. The doctors wanted to talk to all of Mom's children. I'd find this out by the third text message and one phone call to my sister later that morning.
Earlier that day the first text message "R you up" was replied with "Yes". An hour later, the second text said, "I will call you later. On the way to hospital." My reply was a simple "ok". Almost two hours later the next text from my sister "I will call you later I would try to get a flight if I were u. Not good out look" prompted me to call her. After our brief conversation, I decided I would leave work at 11:30 to go home and pack and find a flight that afternoon to Atlanta. I NEEDED to be there... To ask questions of the doctors... To get answers... To see my mother, my brother and sisters. I dreaded this trip... Not because of my mother's condition but more so because I hadn't spoken to Regina and John for several years. I feared the potential confrontation that would eventually arise. I did not know many things and certainly did not know at that time that in one week my mother would pass away. I also did not know that I was beginning a journey of an entirely different type when I boarded the plane for Atlanta later that day.
I arrived late afternoon to unusually cool weather in Atlanta. After a short transit ride to the rental car center to pick up my rental I headed northwest of Atlanta to Marietta where my mother was in the hospital. Atlanta rush hour traffic coupled with taking a wrong exit too far north on I-75 delayed my arrival to the hospital where my mother had been since the past Friday. I arrived and parked the car, and after asking for directions to the room from several staff, I made my way to see my mother. When I walked in the room, she was in her bed and my sister Lori was by her side. I walked close to my mom and said hello and who I was. She looked at me, tired, and smiled. She appeared to recognize my voice but most of the time you could never be sure if she knew who you were. Later that evening I talked with Lori over dinner in the hospital cafeteria; she told me it did not look good for Mom. She mentioned the tumor and a possible procedure to stent our mother's bile duct and we both concluded that all of us needed to discuss this tomorrow with the doctors. Before navigating three exits south to the hotel where I stayed my first night in Marietta, we stopped back to see Mom and found our sister Regina had arrived. She had returned for a brief while that evening and was asking my sister Lori to stay with our mother that night at the hospital. As it turned out Regina stayed with Mom that night. I went to bed that evening knowing I would be up early, rested, and at the hospital in the morning as early as possible to find out more information from the doctors.
Wednesday morning I woke up early, got showered and dressed and headed downstairs to get breakfast before going back to the hospital. The hostess at the breakfast area in the hotel told me they weren't open yet. I waited patiently for my sister to get up and get ready and when we both found out that breakfast wasn't included in our room rate we decided to head to the hospital to get breakfast rather than pay $10.95 per person for what looked to be a pretty mediocre buffet. Our appetites were weak anyway. My sister went to Mom's room while I headed to the hospital cafeteria. After eating a light breakfast alone, I went to my mother's room. My sister Lori was there and my mother was sleeping, and appeared to be peaceful. After a short while, the doctor arrived to discuss my mother's condition. Later that morning after Regina and John and my sister-in-law Trisha arrived, and my mother awoke and appeared to be well-rested and coherent, we would all hear the diagnosis and prognosis again. We'd hear about the tumor and how it was blocking the center of the bile duct where two branches meet to form one duct that drains bile from the liver to the intestine. We'd hear about the stent procedure and the risks of doing this on an 86-year old patient with dementia - she could die during the procedure but that would be unlikely. More likely would be an even less cogent mom following the anesthesia. And the complicated and long procedure would only be palliative, providing three, maybe six months of relief to one side of the bile duct. The stent was temporary and the long, complicated procedure would have to be redone every three to six months to keep the flow of bile moving. The alternative was to do nothing, and make Mom comfortable, in a hospice setting either at home or at a community hospice.
After hearing all that was to be heard, the four of us retreated from Mom's room to a public seating area where we all expressed our opinions on what should be done. Despite me not having spoken to John and Regina for several years we all were cordial and allowed each to present their opinion. As I expected, John and Regina to some extent were initially leaning towards performing the procedure; after all, they had been around Mom more in the last four years being her "primary caretakers", and I think they failed sometimes to see how frail our mother had become. Lori and I, on the other hand, had less time with Mom due to the distance; I know myself that I had partially accepted the loss of my mother four years ago when she moved to Georgia after her stroke. We wasted little time deliberating and after we each stated our opinion on what we wanted I was somewhat amazed that we unanimously decided not to put Mom through the stent procedure! It seemed a "no brainer" to me but I really didn't know how my other siblings would react to the situation... Would they let their personal feelings of pain and loss override what seemed to be the most compassionate choice? Did they want to try to keep their mom alive longer for their own personal needs? I remember discussing the decision afterwards in the hospital hallway with Lori and we both agreed it was miraculous that the four of us could put aside feelings of anger to meet and rationally, calmly reach consensus on what would be the most important decision of our lives to date... That which determined the course of our mother's life, the outcome of which, would be her death.
We returned to the hallway near Mom's room and after a few clarifying questions John informed the doctor that we would not be requesting the stent procedure. The doctor appeared relieved but we all wondered to some degree whether we had made the right decision.
A short while later we were all back in Mom's room discussing the next decision with the palliative care representatives from the hospital. I don't even know if we all knew what palliative care was, but one of the two women assigned to work with us explained that it was about making the patient as comfortable as possible. She was young and compassionate and sensitive to our feelings over the difficult decision we had made. She told us she had made a similar decision for her grandmother recently and understood how we felt. She also asked if we wanted to do home hospice for Mom. John and Regina both honestly admitted they could not do this in their homes. They had each tried to have Mom live with them four years ago after her stroke and knew the difficulty in doing this. I asked about hospice facilities and the representative told us of two local community hospices. She spoke of one older facility and then one newer facility that was built less than a year ago. For the first time I heard the name of this place--Tranquility at Kennesaw Mountain. She spoke of how nice this place was and how great the staff was there. She mentioned the screened-in porches on each room with rocking chairs and how you could actually wheel the patient in their bed out on the porch for exposure to nature. Just based on the name and visualizing what she just said about the porches, I thought to myself "What kind of hillbilly hotel is this?" I didn't want my mom dying in such a place! I just pictured run down shacks with peeling white paint on the clapboards and banjos playing. I had no idea that in just a couple hours from now I'd be walking through the doors of this "hotel" and thinking to myself "this is absolutely perfect".
Offering alternatives, John spoke of possibly moving Mom to a hospice facility near him an hour or so south in Peachtree City; Regina quickly countered that she wanted Mom closer to her in Marietta. Someone, I think it was Lori or Trisha, mentioned visiting the places to compare but we ended up never doing that. John asked about the cost; the other older palliative care worker said that Medicare covered the full cost of this and how wonderful that was... We all chuckled and agreed. For the second time that day we very quickly experienced another miraculous event... Without issue, we all decided to send our mom to Kennesaw Mountain. After this decision, concerned whether we were moving too hastily, I asked John, "Shouldn't we go and check this place out first?" John said, "If we don't like it we won't have her go there"...I nodded my head in agreement. I did not realize at the time how right our decision really was... And that this decision had been made long before any of us had ever discussed this. Thinking back on this event after my mother's death I was surprised at how quickly we decided two important things for my mother almost too easily, especially since other decisions about her life seemed to generate more discussion, deliberation and issues. After checking about whether Tranquility had an available room, the palliative care worker informed us they did and that she would arrange a transport for our mother to this community hospice.
Everyone left the room to plan, to eat lunch, to decompress from the morning's decisions... Except me, and my mother, of course, who lay conscious and upright but quietly in her hospital bed. In the next several minutes, I would have a brief conversation with her that would forever change my life.
I felt I needed to stay... I couldn't leave my mother alone in this room following this decision... This decision that would affect her life... And her death. I stood at the right side of her bed realizing that this was it... Realizing that this trip to Kennesaw Mountain Hospice was confirmation that she was going to die. At the time, I had no idea why the following conversation occurred. What I reveal here is a true account of what happened, what was said between me and my mother. It started with me standing at her bedside and her lying in her bed, propped up. Emotionally, slowly, and tearfully, but trying to hold back my crying, I uttered the following words "Mom,...I promise you... That I will do everything possible to keep this family together. I know we have had a lot of problems but I promise you I will do this. " While I was speaking I was thinking to myself and asking myself "Chris what the hell are you talking about!? Why are you promising this!? You haven't even spoken to Regina and John in years and you know how difficult that is going to be to do... And you know the pain and difficulty and how much time it has taken in the last five years to re-establish a relationship with Lori following the death of her daughter...Why!? Why are you making this promise!?
I moved towards the chair at the side of her bed and sat reaching out to hold my mother's hand. I looked in her eyes, my tears now gone and asked slowly "Mom, do you know you are going to die?"...she looked back at me quietly and almost childlike and very coherently and clearly and calmly said one word..."Yes". Her simplistic and honest answer engaged me further and prompted me to ask her "Are you afraid to die? Still looking at me she said "Nooo" in an "of-course not" sort of way. She said this as if to indicate what a silly question and "Oh Chris, don't be simple", something she had told me many times before in my life. Intrigued and curious if she REALLY somehow knew more about her own death I asked "Well do you know WHEN you are going to die? My mother's response... Again one word..."Eight."
"Eight?", I said. "Eight.", she replied nicely but abruptly and with certainty in her voice. Overcome with emotion, I began to sob and placed my head on her lap... She completely surprised me by immediately placing her hand on my head and patting my hair and very compassionately and clearly saying "Ahhh...it will be alright... Just go up the steps and I'll take care of you". I realized then that she was incoherent as I believed she was thinking back to a time when I was a very young boy in grade school and sick... A time when after determining I was ill with a fever my mother instructed me to go upstairs and get undressed and in my pajamas and she would be up with some orange chewable St. Joseph's aspirin... That is exactly the time in our pasts I thought she was referring to after hearing her response. I raised my head to look her in the eyes once again. Calming myself, and speaking slowly and frankly, my next and final question in this exchange began with "Mom, I don't want you to get in any trouble or anything like that, and I understand if you can't do this, but I would really appreciate if after you passed away, if you could give me some sort of sign, just something to let me know that you are alright". Again my mother looked calmly in my eyes and said just one word. "Tree." Utterly surprised and confused by her response, I looked at her and said "Tree?" and she said once again nicely but succinctly, "Tree." followed by an ever so slight and quick smile. Her response saddened me as I thought it was nonsensical. It was further proof for me that throughout this entire conversation my mother was incoherent... I thought she had no idea what I was asking and this made me sad feeling that my mother really did not know what was happening to her. In some way I thought that might be best... Maybe even easier on her if she didn't know. The hospital room door flung open and in walked Regina and Lori. My brief conversation with my mother ended.
Later that evening in the hotel room I would replay in my head the conversation with my mother earlier that day wanting to believe she understood my questions and trying to make sense of her responses. Did "eight" mean she would die on April 8th, two days after her upcoming birthday? That seemed so far away given her condition. And what did she mean by "tree"? I rationalized that maybe she meant a tree would fall during a storm in my backyard and that would be my sign - my confirmation, that there was an afterlife and Mom made it to there. I'd also reveal this conversation to my sister Lori at the hotel that evening. We discussed and questioned whether it was legitimate... Or whether it was just another conversation with Mom where she really had no idea what we were saying but rather answering with simple one word responses to act like she understood. My sister went to bed thinking my conversation with Mom was like so many she had had with Mom on the telephone in the past four years...unintelligible. I went to bed confused, and not knowing for sure, but trying to understand. I expected I would have to wait for some future storm and for some tree limb to fall in the back of my yard before I would know for certain. And there was always the chance that my interpretation was wrong or this would never happen. Despite my uncertainty about the legitimacy of this conversation, I would not forget it in the coming days. I also did not realize the life-changing impact if would have on me well beyond that week in Georgia.
Mom's transport arrived in mid afternoon. The two friendly blond women helped their "sweetie" move from the hospital bed to the gurney... I went to comfort my mom before they moved her and she touched my face. Actually she touched a scar on my right cheek and mumbled softly and weakly almost a little hoarsely "What's this?" and looked very curiously like she did so many times in the past since her stroke, teasing me about my appearance. On prior visits to see her, she sometimes would also touch my head where I was balding in the back, hold up a few strands of my hair with her aged fingers, and look with surprise as if to say "What happened to your hair?". She'd follow this with a giggle and smile and light laughter as she always found these little jabs at me to be so funny. I guess any mom knows when her child is vain. I did (I guess) as well as my siblings find this humorous too. I said "Mom, you know what that is... And you love to tease me about it... And embarrass me!". Despite her age, and being blind in her right eye following the stroke, I was amazed at how Mom could still see so clearly. Equally impressive, even in her condition, she could still joke about my physical imperfections.
While the ladies were securing my mom on the gurney I asked if one of us could go with her and they said "yes" so I said I'd go. In the hallway of the hospital I remembered I had the rental car and my sister needed a ride so I asked my brother if he'd go instead. He agreed and I handed him Mom's bag as he and the blonds and my mom disappeared down the hospital corridor. Meanwhile me, Lori and Trisha headed in the opposite direction to the parking garage to get our cars and head to Kennesaw.
We got lost on the way even though the hospice was not that far away. It seemed everyone in Georgia had no idea how to tell you to get from one place to another. I pulled over and then Trisha followed in her car and she quickly figured out we were heading in the right direction. We just needed to go a little further up the road and make the next left turn onto Dickson. We pulled out of the parking lot of the nice new commercial development we pulled into to regroup and sure enough Dickson Street was just ahead on the left. We turned and as we travelled down the road on the other side I saw the blonds in the ambulance heading in the opposite direction so we knew Mom and John had already arrived. I also saw old tired-looking one-story buildings that at first I thought were the hospice, but as we got further down the road, I realized I was wrong. Before us to the slight left amid tall pines and majestic hollies was a beautiful large modern arts and craft building that was Tranquility at Kennesaw Mountain. We parked our cars in the new parking lot, stepped out in awe and all said how NICE this place looked! We pressed the square silver handicapped buttons to open the two sets of double doors just under the covered portico to enter the large high-ceilinged entry. Everything was bright and new and beautiful inside. The enclosed chapel with a painting of a waterfall at the altar was to the left, complete with stained glass windows with sunlight streaming through. Ahead to the left was a receptionist desk with a beautiful floral arrangement of white orchids. Beyond this was a hallway with another receptionist desk where we asked where we could find my mother. We were directed to room 7. Along the way, walking atop the grey-green geometric pattern on the modern carpeting, I noticed the very prominent paintings of nature on the wall space in the hallways, much like an art gallery, each a different scene but framed in the same thick bronze-color metallic frames. The paintings were all rich with texture--there were paths with light streaming through the landscape, mountains, water scenes... Each different and each beautiful, although in an unusual way. All of the paintings were soothing to look at but had a strange, almost eerie feeling about them. We arrived in the room to find Mom was comfortable in her bed sitting quietly. My brother John was upstairs completing the paperwork with the hospice administrator. A nursing aide soon entered and after introductions offered to give us the grand tour. She began in Mom's room... There were soothing sage green and beige paint colors on the walls, tray ceilings, generous moldings, "hardwood" vinyl floors, and large French doors that opened to a screened-in private porch complete with two rocking chairs and a small round side table. Beyond the porch was nature--tall pines adorned with birdhouses and redbuds waiting to flower in the Spring light. All this was foreground for the tall Kennesaw mountain beyond. We could take Mom outside by wheeling her bed on the porch if we wanted the aide told us. If she was able to get in a wheelchair we could also wheel her around the property on the decks that extended through the woods to a gazebo and sitting area that was visible from my mother's room. It was cold that day but I heard the weather was supposed to get warmer so maybe we'd do that in a couple of days. Also in the room was a storage area and credenza, private bath, a vinyl upholstered couch that converted to a twin bed with storage underneath, another vinyl upholstered chair and a recliner that could be slept in and a single simple black framed circular clock on the wall. We were told we could stay around the clock with Mom. Above Mom's bed was the only artwork in the room... The focal point, in fact... Another similarly framed picture of a nature scene, as was on the wall space in all of the corridors. This one had a specific purpose... It was concealing the oxygen tanks and other equipment that are behind the hospital beds in hospitals... To soften the room and to make it appear more like a hotel than a hospital room. This looked more like a resort hotel room than anything else, and when we were all back in the room after a tour of the family rooms with bookcases, televisions, couches and tables for eating; library; chapel; kitchens, and all the other spaces that were providing comfort to those visiting the patients here, we sat and talked with Mom to see if she was comfortable herself. Mom sat in her bed and as we all sat on the couches and chairs or stood around her bed my mother announced, almost regally, but softly, slowly, and with a faint hoarseness in her voice,"This is a very nice place". Upon hearing her proclamation, we all laughed and smiled and agreed, "Yes this is!" Mom responded with a big smile and a giggle. We assured her that we were on a "vacation" in the woods and were going to have a wonderful time here, even though none of us knew how long or short the vacation would be.
Everything was perfect it seemed. During our stay there we'd experience the daily round of tea served by volunteers at the hospice, complete with china tea cups and finger sandwiches and sweets provided to the family and friends visiting the patients. On the coming Sunday a trio of musicians playing harps and other stringed instruments would create beautiful soothing music that permeated the hospice grounds. The coming Sunday, I'd break down crying upon hearing the beautiful sound of Puccini's "O Mio Babbino Carro" as I sat on the deck above the musicians making plans to extend my car rental and realizing the emotional and physical stress caused by the event of which I'd suddenly become part--the event that consumed my entire days and nights, my complete thoughts. It was played so slowly and softly it seemed you could hold your hand out to catch the notes wafting in the air. After listening for a while, my tears would subside and I would feel more relaxed, more tranquil. I'd stare intently at the backs of the large traditional homes that bordered the hospice and wonder if the people who lived there looked forward to hearing this music every Sunday, or whether they were annoyed by it.
Everything was perfect. Except our mother... It was hard to fathom that inside a very temporarily cogent and happy, smiling but frail woman there was a serious imperfection that was the very reason she was in this perfect place.
Shortly after Mom's summation I found once again everyone left the room, to get snacks, to buy her flowers, even a stuffed animal, and I was once again alone with her in her room, at her bedside. The dinner we ordered a little earlier had arrived, and I sat there carefully feeding her watching her enjoy what I did not know at the time would be her last full meal, except for a few bites of a cookie or a small bit of fruit in the next two days. It was quiet and the light was dissipating as it approached early evening. I think back on this time with my mother and I realize how fortunate I was to have this rare quality with her while she was aware and happy, even though it lasted only a short time.
That evening Regina spent the overnight with my mom. When I returned the next morning, Theresa, the nurse on duty, discussed with me my mother's difficult first evening. That night, and every night after for the remainder of our mother's stay at Kennesaw, Lori and I spent the overnights with her.
As each day progressed there was evidence of the physical change my mother was experiencing. Waiting, more waiting, and even more waiting confirmed she was slowly slipping away from life to death although, to us observing her condition, she was deteriorating rapidly. She was actually progressing just as the hospice nurses told us she would. Usually, every morning they would talk with Lori and me about the change in Mom and what to expect next. This typically was followed by sadness and sobbing from us over the realization that these changes were occurring... To our mother.
From a cogent pleasant mom on day 1 we found a lethargic less responsive and increasingly yellowing mom who began on day 2 to have symptoms of itching resulting from the buildup of bilirubin, the toxic material in bile resulting from red blood cell metabolism that creates the brown color in your feces. By day 3 she closed her eyes permanently and while she was apparently resting, she had what the nurses called "restless agitation". This resulted in Mom's frequent movement of her feet as she lay semiconscious. She also was no longer taking food or water, having lost her ability to swallow. We were told on our first day at hospice that most people could not survive beyond a few days without water. Swabbing her lips and inside of her mouth with a wet sponge soaked in cold water became a frequent protocol. By day 4, Mom's yellowish skin changed to a deeper yellow brown color indicating an increase in the toxins in her system. The nurses said the absorption of toxins by the brain actually produces a euphoric effect, a "natural morphine", which helps to mitigate any pain she might be in. Following this was fever due to dehydration from lack of fluids on Day 5. Loss of water in her body made her appearance change - her ear lobes gradually flattened and her face smoothed to a more emaciated but virtually wrinkleless state. Eventually, when pain was approaching in her abdomen on the fifth day, morphine every two to four hours put our mom in a painless and restful state. By Day 6, mucous secretions in her throat caused a condition known as the "death rattle" whereby air passing through her windpipe made a loud rattling noise. We all mistook this terrifying sound for a sign that Mom was struggling to take her last breaths. I recall walking past the outside of Mom's room later that day when my brother-in-law Mohammed came running out of the room with a look of panic on his face and saying in English but with his familiar Egyptian accent "Chris, I think your mother is dying now. Get the nurse! She is making a horr-e-bull noise when she is breathing! I stood their unaffected, knowing full well the reason for his alarm, and said rather matter-of-factly, and in my best "Dragnet monotone voice", " It's ok. It's a death rattle caused by mucous secretions in her throat. She's fine." As I walked away from him I smiled and chuckled knowing that every one of us went through this same "alarm" independently. It seemed I was always the one around to provide the explanation for this to the others. Admittedly, my initiation was earlier that morning with the exact same reaction. As soon as I turned my back to Mom, she let out the horrible rattling sound. It scared me to the point of sending me running to get the nurse, expecting the worse to happen any second, as I excitedly tried to explain to her the terrible sound I had just heard.
In addition to the physical transformation my mother was experiencing, there was another change that was occurring too--a change that prior to coming to this hospice I knew nothing about. One night I awoke to find my mother bend at the waist, raise off of the bed, still asleep with her eyes closed, to yell as she extended her arm with clenched fist, "I'm going to punch you Susan! " This woke me up from my sleep in the recliner beside her bed. I knew exactly who Susan was. Susan was my mother's mother... My maternal grandmother. During the week, I'd find in a conversation with Regina that Susan, who died before I was old enough to have vivid memories of her, was not so nice. She and my mother had many difficulties in their lives and certainly not an endearing mother-daughter relationship. One of the only things I knew about my grandmother is that she would not visit my mother until six months after she had her firstborn child, Regina, even though my mom had two miscarriages prior to this. One of the only other things I knew about my grandmother was that my mother would visit her in the Brownsville nursing home prior to her death. My mother was the one in her family of ten siblings who took responsibility for the care of her ailing parents as they entered into nursing homes before they died. I remembered accompanying my mother and taking food--homemade French fries in a basket lined with paper towels to absorb the grease and pink Pepto Bismol tasting mints in a tin with a picture of a general store on the sides and a yellow plastic cover--to my grandfather at the nursing home that was in the white antebellum building down the same street where I was born and raised. I would sit in his bed and share his food with him while the nurses at the home would always kiss my cheeks.
I mentioned my mother's argument with Susan to several nurses in the next days, as well as some other names she was calling out in her sleep that night. Several nurses explained to me that that was very normal. They told me how people not only undergo a physical change or journey as they are dying, but also how many undergo a spiritual journey. They had seen it in practically every patient who comes to hospice, whether they were old or young. There is a process, they said, whereby patients will speak with others, possibly in an attempt to resolve their conflicts in life... To make peace, before they die. This made sense to me after thinking about it. I wondered if my mother's conversation with her mother was an attempt to make peace after all these years. I'd think back on this in the coming days when I thought about my mom, wondering if after her own life, she would see an afterlife... If she would make amends for all that she did wrong and experience Heaven... If there was really such a place. I was so uncertain about the answers to all of these questions.
One thing that was certain to me--throughout her stay at hospice Mom was not in any physical pain. That was the promise hospice made to us on the first day we arrived, and it was kept. Those symptoms that could be managed were managed by medications to provide comfort... To provide peace. We could see the peace in our mother's face. And that is exactly what all of us wanted... For our mom to be peaceful and free of any pain. Because Mom deserved it... We all loved her and wanted her to be at peace.
The peace we wanted for Mom now, before her death, was the same peace we all had wanted for Mom during her life. We knew that in the four years following her stroke she had changed... She had become different... Physically different in that she lost vision in her right eye. She also became weaker. Mentally she was "there" sometimes, but most of the time, not. For brief periods, she seemed to speak clearly and to comprehend what you were saying; other times she garbled her sentences or didn't remember your name. Sometimes it appeared she didn't even know who you were. But she was different in other ways too, especially after she was medicated for her anxiety and the dementia that she had developed in the years preceding her stoke. Over time, this medicine had helped to make our mom different. In effect, she became gentler - kinder - nicer. We almost forgot the pre-stroke Mom, the same mom we lived with throughout most of our lives, was not the gentlest, kindest, nicest mom. In fact, most of the time she was quite opposite.
It was primarily due to her life circumstances--left alone after her husband, the only man she always claimed to have loved, had died young tragically, when Mom was only 45. She was left to raise the four of us, who were all relatively young, and provide for us, despite never having completed high school. She struggled to cope with her loss while also struggling to learn about my father's business ventures, many of which he never discussed at all with her. In addition to financial struggles, she struggled too for many years with personal relationships in our immediate family, with her own siblings and with her late husband's relatives. Our mom went from severe sadness to depression to anger to dementia throughout almost 40 years of her life following my father's death. She was strong and strong-willed, but she was not prepared to handle the life she was suddenly dealt. The four of us paid the emotional price for this, too. I rarely recall my mother smiling or happy in the decades after my father passed.
This mom is who I suddenly came to focus on during my days of waiting at the hospice as the final days of her life unfolded. I had over many years of my own life, through my countless times of being frustrated and angry with her, eventually come to understand and accept her situation and undesirable behavior. I did not hate her for being that way... Instead I think I loved her even more, sympathetic to her difficult life, and understanding of the people and events in her own life that made her the person she was. I always wanted her to be happy... To be gentler and kinder and nicer but it never happened. Never, that is, until the stroke. Looking back on what at the time was a very sad event, I realize now that, in some ways this stroke, was really a "stroke of luck". That sounds awful doesn't it? I don't mean it to be but the stroke did result in a kinder and gentler and nicer mom. It was the only thing in her life that changed my unhappy mom to a mom that was more like the mom I had prayed for for so many years. I think that every one of us had all tried to get Mom to be happy... But our kindness, compassion, understanding, unconditional love... None of it worked to change her behavior. Ironically, we were fortunate to get the mom we had always wanted following that seemingly unfortunate event.
In the past four years I had come to love Mom even more. Prior to her stroke it was too difficult to talk with Mom... It was even IMPOSSIBLE for me the eighteen or so months leading up to her stroke. The dementia she gradually developed resulted in her distrust of me. She was convinced I was driving at night from my home in Maryland to her home in Pennsylvania, almost four hours apart, to break-in and steal "things" from her dining room table...papers, photographs, whatever her mind concocted or whatever she misplaced somewhere in her house. As a result she refused any conversation with me. This went on for about 18 months prior to the stroke. She could not see me or hear my voice without becoming agitated to a state of rage. Sadly, my biggest worry was that I would never have a relationship with my mother again. I expected she would die hating me for the distorted truth her dementia created and that I would live the rest of my life with hurt from never being able to make peace with her. I'd had many difficulties in life with my mother over the years, but this one was the most painful. I was frustrated, as it seemed completely hopeless that I would ever be able to resolve this difference with her. Well, not until the stroke, that is.
On a cold evening in February, Lori called to tell me the somber news - that Mom had a stroke and was taken to the hospital in Uniontown, PA but then transported to Presbyterian Hospital in Pittsburgh, PA. I left the next morning, driving through the mountains of snowy Western Maryland, five hours northwest to see my mother. When I arrived she was in the emergency room and was distraught and agitated. She recognized me but, as she had been over the past eighteen months, when she saw me she began to get angry and upset. This time however her words were unclear... She had aphasia from the stroke so her sentences were not recognizable. I felt uneasy. I didn't want to be there to cause her more trouble then she already had. Over a few hours she became a little less agitated upon seeing me... In fact, she started to become slightly accepting. By the time Mom was moved to her hospital room, the attending nurse told me that she seemed to respond well to my voice. It seemed to calm her. Spending the next several days in the hospital with her and then returning a couple of weeks later when she was released to rehabilitation, I experienced a different Mom. She was weaker and less coherent when she spoke for certain, but nicer as well. I remember arriving at the hospital one morning and my mother lie in bed, already helped by the nurses to groom and dress herself. When I walked in she turned her head to see who was there and when she saw me she smiled and said hello, almost childlike. It was the first time in a long time where my mother was receptive to me. I felt good. Mom had changed. But the change was variable. After rehabilitation, she would move to Georgia with Regina for a short while, then with John for a short while before moving to assisted living. Mom's temperament was hostile at times, placid at others. The new anxiety medications she her doctor prescribed helped to adjust her unpredictable mood. Over time, Mom became less resistant, less angry, softer, gentler and kinder. I'd visit her when I could afford to. Georgia wasn't exactly close or inexpensive to visit. I drove the 12 hours from Washington to Atlanta with Lori and my daughters one year to visit Mom between Christmas and New Year's. That was the first Lori had seen Mom in over a year, so it was a nice present for both of them. Mom seemed happy to see us and enjoyed being taken out, away from the assisted living where she would frequently pack her belongings in sweatshirts she'd tie together to make "carry-ons" and place them near her door expecting to go home at any time. It would be the next summer before my next visit to see Mom. During my stay, Trisha and I would take Mom to the knee doctor to get gel shots that helped her mobility. Mom had been moving slower, having problems with her knees from arthritis most of her life. She again seemed happy, yet passive, most of the time. The next spring, on her 85th birthday, I flew dfown, just for the day, to take her to lunch and shopping. I recall once after helping her into the car and then after getting in myself, my mother touched my face after I asked her if she was okay and ready to go, and she said very emphatically "You are so NICE to me". I kissed her on the cheek and on her hand and I told her "Aww, thank you Mom... That is so nice to hear". My mother's kind remark is something that has stayed with me since. It was minimal time with Mom over the last four years, but it was all I needed, I thought as I sat on the vinyl couch. Surprisingly, I had no idea I would get so much more from my mom, in even less time, this last week of her life.
Every day and every evening at Kennesaw was different. A few days after my mother arrived, Ron, the resident chaplain at Tranquility came to visit my mother one morning and pray with my sister Lori and me. John and Regina were not yet there that day. Lori and I later discussed how comforted we were by his optimism, soothing conversation and prayers. Lori requested that he return when all four of us were there in hopes that his words and prayers might also comfort my other sister and brother who seemed to be having difficulty accepting my mother's imminent death. Ron did get my sister's request and returned one day over the weekend; I don't recall exactly when but I think it was Saturday. In any event, the day and time he returned all four of us were at Tranquility. John was not in Mom's room when Ron arrived, so Lori found him and after introductions, we prayed with Ron by all joining hands, including holding the hands of my mother at my brother John's instruction, as we encircled her bed. I focused very intently on Ron's words especially what he said from Psalm 139. I recall his paraphrased description of this passage---"The Lord loves us so much He knows your life long before you live it... It is mapped out for you long before you are ever born. He also knows so much about us to include the words you will speak before you even speak them." Recalling these words at the airport a few days later would help piece a puzzle together for me that would answer my longtime questions about the afterlife.
Waiting in a room with my entire family was awkward much of the time. When just Lori and I were there in the evenings the conversations were easier. When my other siblings arrived during the day the conversation topics changed and sometimes were a little more difficult to endure. I found whenever discussions about Mom's funeral or her possessions or her house or her money were raised I'd leave the room... I just found it too difficult and disrespectful, I thought, to bring these topics up in front of our dying mom, who was so attached to her material things. One evening I mentioned that thinking about my return flight home made me sad, mostly because I knew it would mark for me the first trip on an airplane without my mother being alive. Lori said she understood. Maybe she felt the same about her return trip home. The others had nothing to say. They just stared at me almost confused by what I had just said. They couldn't relate it seemed. I noticed that throughout the week they would get perturbed if I mentioned the obvious... That Mom WAS going to die. As it turned out, just like many other things that happened this week, my plane ride back was nothing like I expected.
By Monday, the waiting seemed like it would never end. Lori and I had become very impatient. We had no idea how long we'd be there. We also missed our homes and wanted to go back, but at the same time we didn't want to leave and knew we couldn't leave. We had to stay until this was over, whenever that might be. When Lori and I went to bed Monday night we both concluded that we could not spend another night at the hospice... We did not know exactly what to do but we both knew we were exhausted, both physically and mentally, and just needed to be somewhere else.
The next morning, before Lori woke up, I was up very early. I showered and dressed and sat on the vinyl chair waiting for the sun to rise... Waiting again for another day to come and pass. As the hours ticked on and it got close to the time for the morning visit by the nurse, I saw something I had not seen in days. I saw my mother begin to stir slightly. I walked cautiously to her bedside to look at her face just as the sun was streaming around the perimeters of the shades on the French doors. It was then that I realized a change had definitely occurred in our mother overnight. What I saw was incredible, but also what the nurse had said happens to some people. Near the end, some people, after being nearly comatose, will have a spurt of energy, and wake up and appear as if they are recuperating. That morning, my mother awoke and opened her eyes, after having them closed for the past five days! It was surprising to see her raising her head slightly off of the pillow and turning to look back at me. But when I looked into her eyes, I realized that they had changed too. I didn't see the same piercing light blue eyes I had seen all my life when I looked at my mother; instead I saw glassy eyes, still very light blue but almost shining... Shining as if beams of light were coming from inside her eyes! It startled me when I saw this and I backed away slightly, almost afraid to look at her. She smiled sweetly and slightly at me and I recall feeling comforted although I was still a little startled by what I saw. Lori awoke and eagerly greeted Mom taking her hand and saying "Hello!, Good morning Mom!" How are you? My mother said nothing but responded with a slight smile, her head resting on the pillow. As the hour wore on Mom changed again. She closed her eyes once more. The nurse entered to check on her shortly before 8:00 a.m. After taking her vital signs she said "Guys, your mother's condition has changed... Her breathing is different and it could be any time now". "Any time?" I asked. "What does that mean? Hours? Days? Longer? The nurse replied compassionately "It could be any time between now and the next couple of days... Everyone is different. We don't know exactly when this will happen". Lori looked at me and asked if she should call Regina and John and I told her yes but tell them to take their time in getting here. After saying that, I thought back to my conversation days ago with my mother at the hospital. She said "eight" when I asked her if she knew WHEN she was going to die. I wondered if she did know? Was it really time? I wondered if it was meant to be that only Lori and I were there. I thought to myself that might be easier. Maybe our reactions would be less dramatic than if all four of us were present when Mom dies. I also thought maybe this was the way it was meant to be--the way Mom wanted it to be. The clock ticked on as Mom's labored breathing continued--strong but irregular. 8:10, then 8:20, then 8:30. I watched as the minute hand of the clock advanced standing at the foot of Mom's bed watching her helplessly as she struggled to breathe. My heart was racing and I felt warm and wanting to cry. I knew also that John and Regina were not there. I thought she would die any minute, but the clock moved on to 8:45, then 8:50 and finally 8:55. It was 9:05 the next time I noticed the clock, and our Mom was still breathing. As 9:40 arrived, so did my brother John followed shortly afterwards by Regina. Both were emotional and excited as they entered the room and raced to Mom to see her in her final moments. They were astonished by the sound of her breathing. We all expected the end was very near. But Mom, strong and strong-willed, breathed on. I told them the nurse said it could be close or it could be three more days... Everyone is different. As the minutes turned into hours we began to relax and so did our mother's breathing pattern--we realized it was not quite Mom's time to die even though none of us knew when that would actually happen. I kept thinking how stressful this was. The waiting. The unknown. I felt trapped. I wondered to myself, ridden with guilt, "Why can't she just die to get this over with!". Earlier that morning I was convinced it would happen at 8 or shortly after but when it didn't, that just further confirmed for me that my conversation with my mother at the hospital the previous Wednesday was pure babble. I expected Mom would last a few days more, at most.
The day seemed to wear on slowly but looking at the clock the hours were passing quickly. We all stayed around Kennesaw, but wandered in and out of the room. Mom's breathing seemed to stabilize. She was doing fine when the nurse checked again at 12; the same was true when she checked four hours later. She asked if we were eating and getting time away to relax. We assured her we were eating but I said "I can't leave... I want to be here". None of us wanted our worst fear to come to fruition - for our mother to die alone. The conversation prompted John and Lori to leave a short time later to get dinner; Regina and I stayed and talked while we waited for them to return. Regina had leftovers from Marietta Pizza to eat in the refrigerator at the Hospice kitchen; John and Lori brought me back a sandwich that I ate in the room. Eventually, we were all back in the room - waiting--again. Before long, just as the sun started to set, the nurse was back to check on Mom. It was a few minutes before eight o'clock. Within minutes my mother's breathing changed and the nurse said very seriously "Guy's it's time. I'm sorry. She is very close". I looked at the clock... It was exactly eight o'clock pm. Not 7:59 or 8:01, but exactly eight o'clock. My heart jumped. I could feel it racing as I watched my mother breathing heavy and irregular. The tension in the room was thick. Different amounts of time elapsed between each of her loud exhales. Sometimes it was 6 seconds, sometimes 10 seconds sometimes longer, up to 20 seconds. Longer periods created this scary uncertainty of not knowing whether that was her last breath. Her breathing went on for a while like this. John and Regina hovered near Mom's face to tell her we were all here and we loved her and that it was ok, it was ok to go... Everything was ok. I didn't think everything was ok but I let them do what they did without interruption or comment, what they needed to do to say goodbye to their mother. Lori paced nervously on the right side of Mom's bed. Tears were streaming from her brown eyes and Regina was also crying and wiping her tears on Mom's sheets. Mom lay there in bed, motionless, eyes closed, doing nothing but breathing... Loud and irregular. John paced looking at the iPhone clock and hovering around Mom touching her face and hair, kissing her on the face and neck. Regina sat on the other side of Mom holding her hand as the breathing seemed louder, more difficult. It seemed as if that was the only sound in the room, and it was being amplified. I stood at the foot of my mother's bed and prayed for her as I watched my mother and my siblings and the clock, which was getting closer to 9:00. I felt this solemn peacefulness that I had never experienced before... It felt, albeit temporarily, like I had absolutely no burdens, no cares in the world, now, ever before, or never to expect in the future. The feeling was odd but extremely pleasurable.! It was the exact opposite of how I thought I'd react or feel... I just could not cry or feel sad! I knew my mother would soon be in a better place and that comforted me almost beyond description.
Shortly before 9:00 I stepped out of the room and walked the length of the hallways. I did not want or need to see my mother take her last breath. That seemed too morbid and sad to me. I reasoned that I was not there to see her take her first breath so I shouldn't be there to see her take her last one either. Outside of Room 7, the hospice seemed as it always did--quiet. I walked by the same familiar rooms where some doors were shut and others were opening with visitors doing what all visitors did...wait. I saw Theresa the nurse and told her it was happening--she was near the end. She said she would be in shortly. After I returned, so did Theresa, to check my mom's vital signs... I didn't watch, but my brother, hovering over my mother, turned to me and said excitedly but informatively "She took her last breath at 8:59". I instinctively looked at the clock. I was stunned when I heard the time. My mother began to die at 8:00 EXACTLY and took her last breath at 8:59...she was "going to die" at 8, just as she said, and she finished before it became 9. It was exactly the time she told me, days before in Kennestone Hospital.
Theresa, hugged some of us and said how sorry she was for the loss of our mother, before leaving the room. We all said our goodbyes. I kissed my mother's forehead and said I love you Mom, still without tears. Lori said goodbye and expressed her love to Mom as well. John and Regina were more emotional; distraught over the loss Regina sobbed heavily and wiped her tears and mucous on her sleeves. John, teary-eyed, upon seeing this motioned angrily at Regina not to do that I watched as Regina clenched her fists, raised them upwards dramatically and then said as she pulled them down slowly "Why is someone always angry with me!". My heart melted for her--we had all just witnessed one of the most difficult and emotional events in our lives, but seeing Regina's frustration in response to John's callous reprimand was almost unbearable. She moved towards me seeming almost like she would collapse. I put my arms around her as she reached hers around me placing her head on my chest while she cried uncontrollably... It had been many, many years since I had hugged Regina. It felt awkward, but I knew this was what she needed. I told her it would be ok.
As the clock moved forward we all gathered our things and Mom's things from the room. The "vacation" we had begun last week was now suddenly and sadly over and we all felt a need to gather our belongings and leave. Not because we had to... But it was a rough week and it was definitely time to go. In the room, there was quietness and calm. My mother lay motionless in her bed, crisp white sheets draping her body. After we left the room, we all thanked and hugged the hospice nurses and assistants in the hallway before agreeing to meet in the library to discuss plans for Mom's funeral. Now seemed the appropriate time. Once again, that week, the four of us sat together, this time in the four chairs in the library---two on one side and two on the other side of the fireplace--to make decisions. Lori and I were on one side; John and Regina on the other. In the next 30 minutes or so we agreed on the arrangements for Mom; the simple viewing and service Mom would have wanted, the funeral home, the date and time, her outfit, the flowers, and so forth. We all did what was expected of us, and we did it quickly and without dispute.
Having finished our business we walked out to our cars, carrying our bags and Mom's belongings she had brought for her stay. I told Lori we should stay with Regina who lived closer than John did. As we crossed the threshold through the two sets of double doors to the parking lot for the last time, we said good bye and good luck to another group of visitors who were there for the same purpose as we were. Our stay at Kennesaw was over.
It was late when we arrived at Regina's and well after midnight when we retired for the evening. After being in Georgia for the past eight days, tomorrow I was finally going home. I knew after arriving I would be home only shortly since I would still need to travel to Pennsylvania for my mother's funeral the coming Saturday. But still, I was happy to be going home. I had some difficulty falling asleep. I was restless. Maybe it was because I had become used to sleeping on the vinyl recliner in my mother's room at the hospice. Or maybe it was from too many cups of strong coffee I had drunk that day while I was waiting for the inevitable. For whatever reason, before closing my eyes, I lay in bed, thinking about what had happened... I had lost my mother. I pictured her when she was younger, dressed in an orange wool dress with a brown belt around her thin waist--her hair up, beautiful milk-white skin, red lipstick applied perfectly, coming through the classroom door at Gallatin School, to my sixth grade play. Mom was so beautiful. It was hard to believe she was gone.
We awoke late in the morning. In the early afternoon, Lori and I left Regina's house for the airport. After stopping to get gas, we went to return the rental car. I had my carryon and Lori had her bag and a garment bag holding the outfit for Mom's funeral. Lori and I had left the hospice one afternoon to get away for a couple of hours. We decided to look for a funeral outfit for Mom and get haircuts for ourselves. We were not sure how much time we would have to do either in the coming days. We had seen a nice shop, Pendleton in Marietta Square, and decided to stop there. We found Mom's outfit... A lightweight black, white, light blue, and pink zigzag striped V-neck sweater to wear over a simple white top and a pair of black pants with an elastic waist, just like Mom liked. Lori would take this on Friday to the funeral home in Uniontown, PA where she and John would make the final arrangements.
On the escalator to the airport transit I discussed again with Lori my promise I made to Mom the past week to keep the family together. She mentioned she was planning a trip to Disneyworld next May for her daughter's 21st birthday and that might be a good place for all of us to go. I agreed, remembering that one of the conversations all four of us had one evening at the hospice in Mom's room was the price of Disney tickets - probably because that was one thing that was nonconfrontational - easy to discuss. On the transit ride at the airport terminal I got separated from my sister. I stood holding the metal pole to avoid falling, while thinking about the events of the last week. I kept envisioning my mom in the hospital and at the hospice. I also thought about the events of the week, good and bad, with my siblings. I also thought intently about Chaplain Ron's passage he read the second time he prayed with us, especially the part "The Lord loves us so much He knows your life long before you live it... It is mapped out for you long before you are ever born". I got off the train at the next stop to wait for the next one, which my sister would be aboard. It arrived after a few minutes and I jumped on to see my sister. Jokingly, I acted as if we were travelling separately and acted surprised that I ran into her by chance. As I continued my conversation with her, one man standing next to us seemed to marvel at the probability that a brother and sister travelling separately would have run into each other in an airport on the same train. I asked my sister what time her flight was leaving, acting as if I didn't know, and if she wanted to have dinner together. She agreed, going along with my joke, smiling. It seemed like two siblings who had a chance meeting at the airport who also had the fortune of having time to eat dinner together, to catch up, to the bystander.
I was leaving first so we went to a restaurant near my gate to get something to eat. We were short on time because Regina wanted us to stay longer at her house. It had been years since either of us were there. Eating quickly, I pulled out my cell phone to check the time. After putting my readers on to key in my passcode to unlock my phone, I noticed that the wallpaper, which had been a picture of my daughters Megan and Katie this past Christmas, was different. There was now the album cover of Nat King Cole's song L-O-V-E. You know, the song that goes "L is for the way you look at me". At first I thought my iPod was on, but after looking closer I realized it was indeed my wallpaper on the main screen. I remembered the day I bought this song on iTunes last Spring. I had just spoken to Mom and found her happy and very cogent. We talked briefly and I told her I missed her. She asked when I was coming to get her, something she would say often when we spoke. She'd also say that she wanted to move home. I told her my standard response which was not to move because I wouldn't be able to find her. She chuckled. I told her too that I loved her and she laughed and said she loved me too... She loved all of her kids. Before hanging up, I also told her I would come and see her soon. I would not travel to Georgia for a few months. But, by July, Mom was moved from her assisted living to a rehabilitation center following a bout with pneumonia. When my daughters and I arrived, we saw how awful her latest, temporary home was. Mom, along with the other patients, was alone in her wheel chair parked up against the wall, head slumped and sleeping. She woke up only after we coaxed her, but she was extremely groggy. Struggling to stay awake, she sat in her chair and repeatedly dozed off. The nurse explained that Mom was very tired. I decided to let her sleep and return later. When I did, she was in bed already sleeping, even though it was o