LEFT TURN – A Journey Through Strokes
MAY 20, 2009
A call rang at 5:30 a.m. on the landline, startling me awake.
The bedroom windows were open, birds chirping, and the dawn’s early light of my wedding anniversary streaming in, the beauty of which seemed incongruous to my heart panicking. My husband, Pete, lying beside me rushed to pick up the phone, on the nightstand next to him. He reached over, taking it from its’ holder and held it up between us. The number lit up in yellow: my father’s cell phone.
Why would Dad be calling at this hour, and from his cell?
My mind swirled. Something must be wrong!
Within about thirty minutes of speaking with Dad and calling my older brothers, Bill and John, I packed a bag, showered, grabbed the travel mug of coffee Pete made for me, and drove off from our home north of Boston. My brothers did the same from their respective houses in New Jersey and Connecticut. The three of us were heading in the same direction – Syracuse, New York – where our parents, Ann and Bill Burrows, lived and we were raised.
It was the longest drive home.
And as Dad would later say, when life took a ‘left turn.’
Five hours and fifteen minutes later, I arrived to Upstate University Hospital, a teaching institution specializing in stroke, on the campus of Syracuse University, from which my mother graduated with a B.A. and my Dad a law degree. It wasn’t easy seeing Dad, who had not slept in about thirty hours, walking alone down the antiseptic smelling hall to greet me, then Mom in ICU lying in a bed on life support, her eyes closed and a tube inserted down her throat.
The team of neurosurgeons gathered my Dad, brothers and I in the hall outside Mom’s room, with MRI and CAT scan results open on a computer screen. They explained the seriousness of the situation and that Mom had less than 50% chance of surviving the hemorrhagic stroke she had suffered.
Mom had experienced, they said, a “right side bleed” in the back of her brain, affecting the opposite side – the left – controlling sight. They pointed to the lower left quadrant where the blood, after leaking from the vessel on the right, had dispersed. The path it took destroyed that section of the brain. Once the bleeding starts, there is nothing that can be done to stop it, though it will eventually cease on its own.
The area filled with blood causes pressure on the brain.
“It should subside with time,” one of the doctors stated, “hopefully allowing your Mom’s symptoms to improve. If it does not, or is too slow to do so, intervention may become necessary.”
The scans indicated, too, that Mom had extra protein, called amyloid, built-up within the artery walls (blood vessels) of her brain, which can cause them to weaken. Amyloid angiopathy, as Mom’s condition was called, can be hereditary and is not associated with high blood pressure (hypertension) which most hemorrhagic strokes are.
Some studies suggest that aluminum, used in foil, some vaccinations, food, its’ containers, shampoos, soaps, make-up, deodorants, and certain prescribed and over the counter medicine such as antacids, can cause an increase of amyloid in the body, particularly the brain. MSG also poses a risk factor for amyloid build-up. Amyloid is found in patients brains who have suffered “diseases” such as Alzheimer’s, Lou Gerhig’s, Chronic Fatigue Syndrome, etc.
About noontime on Tuesday, May 19, my mother, age 76, received the Over 65 Shingles Vaccination. By five o’clock, while she and my father were at a neighbor’s house, Mom began to feel nauseous. They left the party for home where Mom’s symptoms went downhill. By @2 a.m. the early morning of May 20th, she and Dad were in an ambulance headed to Upstate.
At Upstate, leaning over the ICU metal bed, I held Mom’s hand, looked at her closed eyes, then whispered in her ear with sternness, “Don’t you go anywhere, Mom. Be strong and hold on. This is not your time.”
Watching Mom fight for her life didn’t seem fair. She’d been herself 24 hours before, driven to and from her appointment, had lunch at Panera Bread, grocery shopped, and dressed for an evening out. Mom had always taken care of herself. She ate healthy, was not overweight, didn’t smoke or drink, walked, kept busy with housework, errands, family and friends. She was calm, always cheerful. Both her grandmothers’ – my great grandmothers – lived to be 98 and 95. I remember each well.
Before long, standing in the hall outside the ICU room, the neurosurgeons introduced the idea of surgery to relieve the pressure in Mom’s brain. A handsome, young, dark haired neurosurgeon who didn’t look much older than the college students walking around campus, explained the procedure, concluding, “There’s risk but it might help save your mother.”
Crossing my arms in front of me, I asked, “Who would perform it?” praying the answer would not be him.
Shouldn’t he be in a classroom, or going to Prom?
With confidence, he said, “Me.”
Dad signed the paperwork. The neurosurgeon performed the surgery. We waited.
Mom survived the procedure.
Over several days, into Memorial Day weekend, as the pressure relieved, Mom became more awake, her eyes opened, and though we couldn’t tell yet how much of or how her sight was affected, it wasn’t long before she wanted coffee, held her mug to drink from it, and began eating, with our help.
And the young neurosurgeon became my hero.
Though things were looking up, privately in the hallways and family conference rooms, my Dad, brothers, and myself were warned by doctors, nurses and therapists that Mom could suffer another stroke, and if so, most probably within the first year. They said Mom was at risk of falling due to poorer eyesight and some connection. They told us that Mom shouldn’t be left alone and that we may need to plan for the future in regards to where she, and Dad would live, etc.
But Mom was with us. We were lucky. And if my mother – Ann Livingston Tracy Burrows – was upset with her situation or afraid, and I imagine that at times she most certainly was both, she didn’t show it. And she never once complained.
Mom finally moved out of ICU for Upstate Rehab on the second floor. There, she worked hard, and rested. Rest was just as important as her therapies. Her brain had been seriously injured and it and she needed times of quiet, darkness, and recovery.
With good therapies, resilience, optimism, and hard work, Mom made great progress. Per doctors’ and therapists’ instructions to work the damaged lower left quadrant which Mom could not see out of, we frequently reminded her, “look left, Mom.”
It wasn’t long before Mom sat in a chair, took the spoon from us and as she practiced walking, freed our hand from around her belted waist. “I can do it,” she said, reminding me of her father, my grandfather, who, almost three decades earlier, suffered similar type strokes and also fought with determination.
He taught me that the surname Tracy means “fighter” and Mom proved she was a Tracy, fighting with 110% effort and grace. In her room, Mom practiced things that were once easy for her which were not anymore, such as dressing, tying her shoes, walking, and using the bathroom in all aspects, such as looking for the soap to wash her hands with, ‘looking left’ for the paper towel rack on the wall, figuring out how to pull it down, drying her hands, brushing her teeth, etc. all while we or the nurses were by her side.
Outside in the halls, Mom practiced walking further. We did laps around the square hall, dodging obstacles, and passing by the nurses’ station, pointing out things such as flower arrangements or candy dishes on the counter. For the first couple of weeks, Mom went to the therapy room by wheelchair, but later by walking.
There, in therapy, she picked up brightly colored cones from the floor in front of her (mainly placed on her left side), practiced ascending and descending stairs, writing her name, playing games, matching items, all while we and the therapists watched and hoped for progress. Sometimes there wasn’t and it could be discouraging. It was difficult, especially for Dad, to watch Mom struggle. But overall, in time, Mom made great progress. We encouraged her and stayed by her side, and let go when we needed to. Mom did not like being babied or to feel different.
One evening before I left to head back to Mom and Dad’s house for the evening, Mom could, for the first time, see enough of the faces on the television to make out that what was playing was an old movie, the name of which she recalled with ease, and also seemed interested in watching. I was thrilled. It felt like a big step forward and a reason to hope that things would keep improving. The swelling was still decreasing.
And for quite some time, although Mom, due to sight, some connection and short term memory deficits, left every bit of food on the left side of her plate straight down the middle claiming to have eaten it all, Mom moved forward in leaps and bounds from the point when she’d arrived at Upstate.
Mom’s doctors kept repeating, “Ann is a miracle.”
JUNE 18, 2009
About a month after Mom’s stroke occurred, early one evening, back at home in Massachusetts, my cell rang.
My brother John’s name flashed across the phone. I knew that he was with Mom at Upstate. We were all looking forward to the next day. After 28 days in the hospital and its’ rehab, Mom was to leave for St. Camillus, a rehabilitation facility on the west side of Syracuse. The idea and hope was that Mom would spend a few weeks or more there in therapy with the next step, hopefully, being home. The following day was also the last day of school for our three sons, then ages 12, 10, and 6.
I answered the ring. “Hi John.”
“Hey, Sarah, so, I’m sitting here next to Mom. She’s okay, but,” he said, his voice starting to crack, “she had another stroke.”
Then, he cried.
I’d never heard John cry.
Mom, as John explained after, had been ‘tucked in’ for the night. Her bag was packed for the next day. Mom was to leave the hospital to go to the next step of rehab at St. Camillus. Dad and John would follow the ambulance, which would transport Mom there. John was sitting right next to Mom when the stroke occurred. [DAD, WERE YOU THERE AS WELL, OR HAD YOU GONE BACK TO MANLIUS BY THEN?]
The second bleed, so soon after the first, seemed like a punch in the stomach. Mom had worked so hard to get to where she was. We all had.
Scans showed that like the first, the location of this bleed, like the first, affected the lower left quadrant of Mom’s brain but also the lower center. So in addition to the lower left quadrant blindness, Mom now lost her lower centerline of vision, posing an even higher risk for falls.
The stroke, fortunately, didn’t hold Mom back too long in the hospital, a couple weeks as I remember. It was then on to St. Camillus rehab, which also serves as a nursing home, where her father had been years before. There, Mom started therapies with a new group of therapists and she and Dad were, for the first time in 39 summers, missing the season at their beloved Adirondack camp on Big Moose Lake.
Though the situation was still difficult at St. Camillus, the room, to me, felt somewhat homier than Upstate. There were no railings on the bed frame and Dad and we could take Mom in the wheelchair outside, where she could sit and/or walk beside the gardens on nice days.
Mom, as always, remained positive and worked hard. Doctors warned us that, understandably, strokes cause patients to be more emotional. We witnessed that at times with Mom, but not often. In regards to this, Dad of course would know better, as husband and wife, they shared the most intimate moments of both triumph and hardships. Dad in general was a great supporter of Mom. His love and dedication was clearly evident. He was there each day for Mom, all day. There was not one in the hospital or St. Camillus Rehab that he missed. Bill, John and I would often say to him, “why don’t you stay home today, Dad, take a break. We can be with Mom. Go for a walk, do deskwork, run errands. Go to camp.” Though Dad went to camp one day, he did not stay overnight, and never missed a day at St. Camillus, or the hospital. He was right beside the woman he had been since they first met in high school, and by doing so, took great care of Mom and set a great example for us.
Finally, in August, Mom left St. Camillus for home. Dad took her and on the way, drove by a cemetery where their close friend had recently been buried – the funeral of which Mom and Dad could not attend.
For months Mom had outpatient therapy sessions – for physical, speech and vision – several days per week at Upstate, about thirty minutes from home, and a good distance from the parking garage.
Mom would suffer the loss of the lower left and center quadrant sight deficits, in the way, for instance, of often not being able to notice someone standing to her left, or seeing a hand that someone put out for her to shake. Walking in general and following direction was more difficult, but this as well as the above, improved with time. In addition, noise and brightness of lights bothered Mom, typical post symptoms for stroke sufferers. Prior to Mom’s stroke, she and Dad had been dedicated fans of Syracuse University basketball games at the Carrier Dome each season and after Mom’s stroke continued to attend [Dad: did you attend in the 2010 season? I have forgotten] but the loud clapping and cheering bothered her as well as the bright lights. A baseball hat helped and Mom, ever an Orange cheerleader, in time, managed the noise and cheered right along.
Mom would not drive again except practicing in the neighborhood with Dad beside her in the passenger seat. I think, for some time, losing that independence was difficult on Mom but she grew to accept it. She didn’t have a choice.
There was, always, for Mom, Dad and us the serious concern and worry about the possibility of another stroke occurring. But overall, with time, Mom enjoyed life again, living gracefully as she always had, never protesting the deficits she fought daily.
I recall the first time I saw Mom after her recent return home. She had woken from a nap upstairs. It was a warm late summer day and after checking on her several times to find her still asleep, I sat on the deck off the kitchen to enjoy the weather, with the windows upstairs and down open, waiting for her to wake. Without me hearing, Mom got up, put her shoes on, tied them, walked downstairs over the yellow duct tape warning the edges, and into the kitchen.
When I heard her footsteps and felt anxious whether or not she was okay, I rushed in from the deck to find her with an apple in her hand, ready to take a bite.
“Oh hi, Sarah,” Mom said nonchalantly.
And that’s how Mom ‘rolled’ the next seven years…
NOVEMBER 22, 2016
My cell phone rang late Tuesday morning two days before Thanksgiving.
It was a warm, beautiful fall day. I was parked at a meter on Main Street in the fishing village of Gloucester, Massachusetts. Our oldest son, Ryan, now 21 and a junior in college, was in the passenger seat beside me. He had recently arrived home for break and we were about to go to lunch to celebrate.
My phone was between us, in the console. I picked it up.
DAD it read.
Our families were planning to meet in Connecticut at John’s house to celebrate Thanksgiving. My parents were planning to leave the next day, on Wednesday, for John’s. Dad still rarely called me from his cell, usually using their landline, only the cell while driving to the lake, which I knew they were not doing now. Suddenly all those years in-between stroke calls came rushing back, seeming like the first call on May 20, 2009 was yesterday.
I looked at Ryan and said, “It’s Grandpa.”
Ryan read my worried expression and life, again, took a left turn, and this time, sharper.
This third ‘stroke phone call’ I received, in many ways, seemed as shocking as the first. Over the past seven years, we’d gotten used to a new normal. The ‘left turn’ had straightened out, so to speak. By November 2009 Mom had made it past the six month risk mark, then, on May 19, 2010, the one year anniversary, and so on. For a long time, ‘Mom had eaten everything on both sides of her plate,’ and life was good.
Maybe it’ll never happen again, I prayed.
Dad worried – “knew” – it would.
During the phone call, which I had on speaker, Ryan and I could hear Mom speak, which comforted me. Before I heard her voice, I envisioned her like before, lying in bed on life support. However, what we learned next from Mom and Dad was that Mom couldn’t see – anything.
Bill, John, and I went into “action.” Bill offered to go to the hospital first. John and I would then take turns. We figured, like previously, we would need to spread out our time and energy, both at hospital and at home.
Bill left for Syracuse right away, however, due to the dumping of two feet of snow in the area, was delayed overnight, @sixty miles from Upstate. When he arrived at the hospital early the next morning, the day before Thanksgiving, his heart sank when he discovered a sign taped on Mom’s Upstate ICU door. He texted a photo of it to us – it read, “Legally Blind.”
Before Bill arrived, Dad spent over twelve hours at the hospital with Mom. A neighbor across the street from my parents home, whose husband had rushed to the house that morning when the ambulance arrived, picked Dad up at @10:00 p.m. in the snowstorm. We are forever grateful for the couple’s help and thoughtfulness of those like them who have shown love and support over the years.
During the next two weeks, which Mom spent in the hospital, Bill, John and I were with Mom and Dad. In ICU, therapies of all types began, like in 2009. As the swelling in Mom’s brain subsided, enough sight returned that she could see enough to function to take care of herself, though she was still “legally blind,” and would remain so.
Once Mom came home from the hospital, I stayed with my parents for @two weeks, helping out however I could. The morning after arriving home, Mom sat at the kitchen table at 8 a.m. and my son, Alex, a high school senior, called. I expected the call. I put him on speaker so Mom could hear and he delivered the news that he had just learned that he’d been accepted early decision to the college of his choice. This added a bright spot during a dark event.
Before I left my parents’ on December 15 I decorated their windows with battery operated candles and placed wrapped Christmas presents on their fireplace hearth. They unfortunately wouldn’t be traveling to any of our homes’ that year. As I was getting ready to go, Mom put her jacket on, the green one she picked out when we all traveled to Colorado a few years before for John’s 50th birthday, and waved goodbye from the driveway, like she always did, before heading back in to rest.
Arriving home north of Boston again, I walked in the front door and set down my bags. Our youngest son, Andrew, almost 14, was glad to see me. He’d worried about his Nana and missed me. Standing in the front hall, I felt as if my legs might give out beneath me. I suddenly realized how tired I was. As the days went on, I regained strength and caught up on things I needed to, but found being six hours away from my parents difficult, worrying about how they were getting along and not being able to help out. There was the concern, too, that another stroke might occur.
During those winter months and early spring, therapists arrived several days a week to the house. That was helpful so that Dad didn’t have to drive Mom the thirty minutes each way to Upstate, as in the past, especially being winter time with bad weather systems often rolling in.
From my perspective – Mom and Dad’s might be different – by spring time, the further we moved away from the stroke occurrence, and the therapies, it seemed Mom and Dad began enjoying a more normal life again. Though Mom very much missed reading books, the newspaper and magazines, she began to listen to books on tape (once we figured the machine out! J), taking walks with Dad and going to the hairdresser again and on errands. Mom and Dad eventually went out to lunch and dinner when Mom felt up to it.
Life was by no means easy for Mom, though she’d never tell you that. In reality, she and Dad were dealing with her stroke repercussions, particularly this last one, which took much more sight than the other two and accumulated on to the others.
There were scares, too, such as the time she felt faint in the middle of the night and Dad called an ambulance thinking it was another stroke, but thankfully it was not. And the time they were driving to the lake for a weekend and Mom told Dad she didn’t feel well and as soon as Dad could, he pulled over.
For them, and us, the concern of another stroke occurring and the possibility of it happening far from home or a hospital made their world smaller. But once again, the further away Mom got from her stroke, we all breathed a bit easier. At six months post stroke, Mom attended Alex’s high school graduation and soon after enjoyed the 2017 summer at her beloved camp with Dad, surrounded by family, grandchildren, and friends.
That summer, Mom was walking, often alone, a distance of almost two miles on the Crag Point Road, admiring the daisies beside it in the tall grass, waving hello to those walking, running, or driving by, many of those who knew and loved her. Although Mom was dealing with many sight and connection deficits most did not see or understand, she and Dad enjoyed the summer and fall weekends together, closing up camp with my brothers on a beautiful, warm Columbus Day.
TUESDAY, FEBRUARY 6, 2018
I put my car in park in the lot at the Beverly, Massachusetts YMCA, where I planned to head in to swim laps. The locker room would be cold. That thought and the predicted Nor’Easter the next day made me stall, as well as the Thomas Rhett song playing on 101.7 The Bull radio.
I turned the heater up and took a sip of coffee from my travel mug, placing it back in the cup holder. Deciding to send a text, I grabbed my purse off the passenger seat and dug for my phone. Alex, our middle son, was on day three of winter break, skiing out west with friends. I typed a message to the hosting parents: thank you…
My cell rang, full volume.
DAD flashed across the screen.
The ring sounded a second time. I prayed that my parents’ landline was out due to weather. With the tip of my index finger, I slid the arrow across the bottom, opening the phone.
“Hi, Dad,” I answered, almost like a question, holding my breath.
“Sarah,” Dad said, his voice calm but quick. “Mom and I are at Upstate.”
My stomach knotted.
“Mom’s had another stroke,” Dad said. “The doctor thinks you and the boys need to get here.”
My heart sunk and our lives will never be the same.
Nine days before – the last weekend of January – I’d visited my parents. It was on a whim. They’d spent Christmas with us just a month before (and we celebrated Mom’s 85th in October and Thanksgiving in Connecticut) but when last minute Pete and Andrew were invited to ski in Maine with Andrew’s friend and father, I took the opportunity see Mom and Dad.
Mom and I walked each day. The weather was nice, like spring. We looked at photo albums Mom had created and/or was given years before. It was one of her favorite pastimes, looking at family photographs, particularly those of her grandchildren. I read Mom short stories her grandmother had written about growing up in Rome, Georgia. Mom and I visited a local woman abolitionist house museum. I noticed Mom grew more tired than usual, thinking it was most likely due to her sight depravations and all that we were taking in. Before I left Monday we had lunch with close family friend, Sue Beeching, and her daughters, and I asked a man to take our photograph. It is the last photograph that I have of Mom before her stroke on February 6. And she looked great – beautiful and happy.
When I was leaving my parents’ house that afternoon, Mom waved enthusiastically with both hands from the driveway like she always did, and I beeped the horn as I pulled out, like I always did. Mom kept waving until I’d driven up and over the hill until I couldn’t see her anymore.
I was and am grateful for those last few ‘normal’ days with my parents, for the stroke soon to happen would cause things never to be the same.
Early the morning of February 6, Mom had been at the ophthalmologist’s office. An assistant dilated her eyes. Just after, in a different room with Dad now sitting beside her on a bench, Mom slumped left, into Dad. She didn’t answer his questions. When he felt Mom’s hand he found it to be cold and clammy and knew immediately what was happening.
An ambulance took Mom to UpState. Dad followed in his car. This fourth stroke/bleed occurred in the front of Mom’s brain rather than the back like the previous three, occuring in the left frontal quadrant which affected the right frontal quadrant, robbing Mom’s ability to speak, move the right side of her body, and swallow successfully. It did not, however, steal Mom’s ability to hear or comprehend.
Sadly, within hours, doctors predicted Mom would not survive, and that she would live only one-seven days.
Lying in bed, leaning toward the left, Mom moved her left side a bit. Repeatedly, she felt her ring finger for her engagement ring and wedding band, which Dad had taken home, as she was not allowed to have jewelry on in the hospital, which he explained to her. She also ran her left fingers through her hair, above her left ear, as if straightening it. It was always a habit of Moms’, especially if something was bothering her. I saw this as her frustration, and/or her trying to “figure” things out.
The doctors asked her to raise her left arm. Mom did.
“Higher,” they said.
And she did.
They asked Mom to raise her left foot. She did. Next, they asked her to raise her leg, which she did, with her knee at a ninety-degree angle. They then asked her the same of her right side, knowing that most likely she could not lift or move them, and she couldn’t.
Later, the nurses helped Mom sit up, to the edge of the bed. They asked if she could stand. She could not and immediately slumped left without them holding her. It was difficult to watch. Eleven days before Mom and I had walked the road side by side.
One of the two nurses left the room, saying she’d be right back. With her came a large banana looking seat machine wheeling behind her.
“What’s this?” I asked, dumbfounded.
“Oh, this is great,” one of the nurses answered, almost giddy. “It’s a lift for patients from their bed to the chair,” she answered. “Every room will soon be getting one.”
Well, when I saw Mom’s expression of both surprise and fear as she was ‘lifted’ from the bed into the air in the ‘sling’ over to the chair, I didn’t think it was so wonderful, at all.
Not long after, a hospital tech came in and, with a tube of sticky gel like substance, placed electrodes all over Mom’s head. The gel stuck in her beautiful, natural dark waves. I remembered this procedure done back in 2009.
After the nodes were applied and Mom looked wired for a journey to outer space, he switched on a bright light he’d brought, and shined it right on Mom’s face. Mom’s eyes squinted and she moved her head away from the light.
He explained he would watch his computer screen for her brain activity.
Why are we putting Mom through this?
I wanted him to stop.
He wiped some of the gunk from Mom’s hair with a warm, wet hand towel but after he’d left, I continued, then brushed Mom’s hair, and covered her up higher with the blanket. Mom didn’t like to be cold and I figured with wet hair and only in her hospital gown she might be.
After my Dad and brothers went home for dinner and the night, a woman came in the room, introducing herself to me as a therapist.
“Ann,” she said in a warm voice to my mother, placing her hand on Mom’s arm and looking in her eyes, “how are you doing today?”
My mother didn’t answer, but did look in her direction, and I felt confident she knew what the woman said.
Good, Mom, I thought.
“Ann,” she repeated, “I’m going to place a box of tissues on the table next to you. Can you reach for them? The box is on your left, Ann.”
Mom sat forward a bit in the chair and managed to turn left. And eventually, Mom reached for the box.
I felt encouraged by this and when the woman left and Mom was back in the bed (by the banana sling), I said goodnight.
“You did great, Mom,” I told her, and reminded her as her nurse had just done, “Don’t pull out your oxygen tube from your nose tonight, like you did last night.” I placed the mits’, which her nurse had left, over her hands, explaining why. “As uncomfortable as the tube must be, if you pull it out, they will have to put a tube down your throat, so leave it be.”
I kissed her goodnight and told her again how proud I was of her and how much I loved her. “I’ll see you first thing in the morning,” I said, and turned the lights off and closed the door, looking at Mom through the pane one more time before I left.
That night, I went back to my parents home encouraged. Seeing Mom sitting in a chair, understanding directions, and reaching for the tissue box, I couldn’t help but think Mom could prove the doctors wrong again and survive. After all, as they had said in 2009 and 2016, Mom was a “miracle.”
She’s a fighter!
Back in Manlius, we spoke of the possibility that with full time care, Mom might live with full time assistance, where Dad could visit or get his own apartment, or perhaps even have in-home care at the house. But, sadly, the next morning when we arrived back to the hospital, Mom was less awake. The nurse said that Mom had a tough night, and yes, pulled out her oxygen, again. That at least made me smile.
Mom is definitely a fighter.
From this point on, it was difficult for Mom to keep her eyes open for long, and she wasn’t lifting her arm or leg as high. It was discouraging, and sad to say the least. She did continue to fuss over the absence of her wedding rings and run her fingers through her hair.
By Friday, three days after arriving to the hospital, Mom’s condition was not moving in the right direction. It was worsening. The doctors and we would, of course, have done anything to save Mom, however, as they explained, that had probably become not possible, and even if she were to survive, her prognosis for a life worth living was not to be.
The head of Palliative Care, a woman named Jennifer, introduced herself to us in Mom’s room and suggested we meet in a conference room. In the small room, about 8×8 feet, Dad, my brothers and I sat in chairs in a u shape against three walls, with five feet at most across from each other. Suddenly, sitting there with just Dad and my brothers, it dawned on me that moving forward, this would be reality. I was really losing Mom. In any family “meetings,” except at times of her other strokes, Mom had always been there, in body and voice. I was suddenly now the only female in my original family. There was so much love and support surrounding me, yet I still had an overwhelming sense of sadness and loneliness from the realization that things for me – all of us, especially Dad – would never be the same without Mom.
A few minutes into the meeting, there was a light knock at the door, and Alison, my niece, just out of class at nearby Syracuse University Law School, joined us, and we were all glad she did. [WAS SARA THERE TOO?]
Jennifer led us through the topic of what we could consider for Mom moving forward, such as stopping nutrition, simultaneously starting morphine and ‘Comfort Care.’ We talked about options of hospice at home or care at a hospice house. Jennifer explained that since Mom’s time before passing would be short and her condition poor, it was probably not an option to move her. We did consider the options of hospice outside the hospital but didn’t see any point in putting Mom through any more duress by moving her.
On Sunday morning, February 11, five days after Mom was admitted to the hospital, we made the very difficult decision but what we thought the best for Mom – to stop nourishment. Over the next four nights and five days, and the ones previous since Tuesday when the stroke occurred, our family was together, whether bedside or on the phone, in telling Mom how much she meant to us, and how much she was loved. For that time, as very difficult as it was on Mom and us, I am grateful. It granted us a chance to say what we wanted and to say goodbye, and vice versa.
On Saturday afternoon when our youngest son, Andrew, age 15, arrived to the hospital on Saturday and spoke to his Nana. Though her eyes were closed and she was unable to move, she answered him. “AAwwww,” Mom said, which told Andrew she absolutely heard him and understood, and that she loved him just like she always did.
From the point we stopped the IV feeding, I stayed at the hospital by Mom’s side each night. Doctors explained that once nourishment was stopped and morphine administered, Mom would become less responsive. That was true, however, I found Mom was able to hear and comprehend, and feel. There were times when I wiped tears from the corner of her eyes, others when she was uncomfortable and moaned to tell us to tell us so, and I would make sure she received more medicine relief.
The first night – Sunday – shortly after Dad, John, and Sara left the hospital at 6 p.m. and arrived back at the house, Mom’s heart rate was up and the on call doctor thought Mom would pass soon. He suggested that they head back, which they did. Alison, who had been by her Nana’s side most of the week, ran over too. We all stayed the night, and my brother Bill, just back to New Jersey that evening, was on cell phone speaker for twelve straight hours. He was right there with us.
Mom, however, did not pass that night as the doctor thought she would. And though, as expected, Mom became less responsive in the days following, she still heard and understood us. Dad sat beside Mom, as he had in the previous days, often speaking to her and always holding her hand, telling her how much he loved her. He gave her his Valentine’s Day card several days early.
Our minister, Dick McCaughey, from the lake visited and after conversing with us, gathered us around her bed and with cell phone speaker on so family could partake, he gave a beautiful prayer.
During the last five nights of my mother’s life, I held her. When we didn’t sleep, I talked and sang to her, stroked her hair, and played Alison Krause music softly on my phone. I walked Mom through every house she’d lived in, spoke the name of each of our fourteen family members and something about each of us, described the hummingbirds she loved to feed and watch buzz to the red feeder outside her camp window, the red geraniums at the boathouse windowsill. When Mom ran a fever I placed cool wash clothes on her forehead, massaged her body with lotion, combed and curled her hair, and in general, comforted her anyway I could. We all did.
At about 8 p.m. on Wednesday, February 14 – Valentine’s Day – before leaving the hospital, Dad kissed Mom goodnight, knowing very well it might be the last time. She kissed him back. It reminded of when I was a child how each morning and evening before Dad left for work and when he arrived home, he kissed Mom. And that was a beautiful thing.
Holding Mom in the hospital bed the last night of her life, knowing the end was near, I felt a mixture of feelings – sad, scared, peaceful, and grateful. Strangely, I think it was, for both Mom and me, the best night’s sleep of the last five. The nurses’ did not interrupt us as frequently as in previous nights. Mom’s body fell to the left, into me, and laying on my right side with my back against the rails, I wrapped my arms about her, repeatedly whispering to her how beautiful and sweet she was, stroking her hair.
THURSDAY, FEBRUARY 15, 2018
When I woke in the early hours of the dawn, I knew Mom’s passing was fast approaching. Her chest was becoming harder, breaths shorter and quicker with intervals up to ten seconds a part. She fluctuated between hot and cold. I held her tight, speaking of all the beautiful things I could think of that I knew that she had seen and experienced and enjoyed in her life, hoping that it was a comfort and perhaps transporting her there.
I repeated how much we all loved her, what a wonderful daughter, mother, wife, and grandmother she had been, how very much we were all going to miss her, that a day would not go by that I did not think of or miss her. I assured her that everything was going to be okay, that we would take good care of Dad, that she would soon get to see her parents, brothers Jim and John, and grandparents again – all the family and friends who have gone before – and that she would watch over us until one day when she greets us in Heaven.
As I lay next to Mom, the sky outside the hospital window, which looked out on the Syracuse University campus hill and clock tower of neighboring Crouse Hospital, was a beautiful pink and blue hue. I spoke to Mom of the beauty of that dawn, explaining what it looked like.
I whispered in her ear, “it’s beautiful, Mom, just like you.”
As hard as it was, I told Mom it was okay to go, that it was time. I said she would ‘fly,’ just like her youngest brother Johnny had loved to. I whispered that he was waiting for her just outside the window and that he’d guide her to God, that she would be well taken care of.
“Mom, we love you. It’s okay,” I told her. “Go.”
Mom did, and to me, by her expression, something incredible was waiting for her.
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