Giveaway ends September 29, 2015.
See the giveaway details
at Goodreads.
Giveaway ends September 29, 2015.
See the giveaway details
at Goodreads.
My art work
When I was young and living in the small town of Wabash, Indiana I used to dream of different ways to become famous. During mass I often fantasized a record producer would, for some unknown reason, be in my church, hear my voice and offer me a contract. Or, I would dream a modeling agency would see me as I vacationed with my family and rush over to tell me I would be the next big thing on the cover of Seventeen Magazine. Even though I spent many years with these images in my head those events never took place. Instead, I went to college, graduated, found a job, got married and began the life I lead now.
It has only been recently that I remembered those long ago dreams and realized it is very unlikely my face will grace the cover of a fashion magazine or my singing voice be heard across the airwaves. I’m okay with this reality because I understand if I truly wanted those goals to happen I would have worked a little harder at accomplishing them. With this realization however, I wondered, have I made my mark on this world? When I’m gone will I have left a legacy? After some consideration I recognized leaving my mark does not require me to be famous. Keeping that in mind, I settled on a list of lasting qualities, I believe, I have managed to accomplish.
I have been a good daughter. While growing up I never caused my parents much concern. In turn they gifted me with their love, a comforting home, siblings to have and cherish my entire life and a college education. As an adult I welcomed my parents into my home. I enjoyed their company and we shared some great meals, laughter and many adventures when they graced my doorstep. For six years as my mother slid into dementia, I comforted and counseled her, fought her medical battles, sat through doctor appointments, made more than one run to the emergency room and, fought my own guilt feelings of inadequacy. Finally, on the day she died I held my mother’s hand and read to her the poems she recited to my siblings and me, and sang to her the songs that brightened our childhood days.
Friendship may be one of my strong suits. I love that shared intimacy. And, nothing seals a bond of camaraderie like the struggle of raising children. Many reassuring conversations took place during the frustrations and joys of raising children. I have been there through health scares, holding hands, sending cards and making phone calls to check in. I have consoled woman friends through the everyday difficulties of marriage and they have returned that favor to me. Most difficult of all I have been with my friend as she fought to keep her husband alive, then, in the end, as she graced him with her love and the permission to leave this earth.
Together my husband and I have created and raised two amazing daughters. They are kind to others, responsible for themselves, fun to be with, gifted with creativity, athletic and smart. As parents we gave our daughter many material items. When they were very young it was toys, dolls and stuffed animals. As they grew it became sports equipment, namely downhill skis. We offered opportunities to try new adventures. We bought a boat and took them tubing, cliff jumping and island camping on Lake George in the Adirondacks. All of those material presents brought the most important gift of all; a family. We formed a bond as we traveled for ski races, or huddled together in a small tent to avoid a storm on Turtle Island. We grew as a family having fun together, sharing dinners, laughing, arguing; just spending time with one another.
With this inventory I have concluded my legacy is one of kindness, love, fun, support and a future generation. Consequently, I think my daughters and our family are far more of a mark to leave on this earth than my past dreams of being famous.
Lately it seems, I am constantly running into people stumbling through the care of their parents. I realize there are many reasons for this phenomenon. One is of course my age. At mid 50’s most of my friends and acquaintances have elderly parents as I once did. The other is that because I went through this journey with my mother I am open to discuss the emotional ups and downs. The frustrations of dealing with uncaring hospitals and doctors, the joy of finding the perfect fit for a parent with caring doctors and nurses. And the fright of walking everyday down a path that you truly don’t want to be on. Getting a diagnosis for dementia can be heart wrenching for all involved, the parent, spouse and the child.
After Mom moved in with me, I luckily found a geriatric doctor who had established his practice based on making house calls, he did not actually have an office. Dr. C was a kind, calm man and my mother immediately trusted him. Over the course of several visits he took the time to get to know my mother, her past life and to understand my concerns. Eventually, Dr. C instructed me to make an appointment at the nearby dementia clinic. With dread, because I felt I knew what the answer would be, I made the call. The expert there concluded what Dr. C already knew. Mom was suffering from dementia. The question remained, How or should Mom be told?
Following is an excerpt from my upcoming book A Slow Slide into Nothing.
With guidance from Dr. C, we determined it was best for him to tell Mom the truth about her condition. He arrived on one of those summer days that makes me realize why I live in upstate New York. The sky was bright blue, with light green spring leaves just beginning to turn to their darker summer shades. The temperatures and humidity were at a level to enjoy the warmth of the sun and the cool breeze, as it brushed the hair from my face. I longed to be outside doing something, anything, different from what was happening in my home.
While Roxann and I gently took Mom hands, Dr. C, with his kind eyes and soft voice, gently told her she had dementia. It was brutal to watch her expression change from denial to realization. Mom asked a few questions, then became silent and eventually lost interest in what was going on around her. Roxann and I questioned Dr. C as to what we should do next.
Later that evening, Mom did not seem bothered at all by this news and the three of us avoided the topic like the proverbial elephant in the room. Roxann and I were amazed at how she accepted her fate so easily.
Mom’s reaction became apparent and heart wrenching upon Dr. C’s next visit and for subsequent visits afterwards, each time, Mom would ask him the same question. It wasn’t that she didn’t believe him, the truth was, she couldn’t remember from visit to visit what he had told her. I grieved each time along with her. In a strong voice, determined to handle her own life and the unknown, she would ask,
“What is wrong with me?”
Dr. C would answer every time as gently as he did the first: “Corki, you have
dementia.”
This has been my summer of travel. For pleasure, my husband and I took several days and meandered down the east coast, then we bee-lined across the state of North Carolina to my favorite southern lake for a family Fourth of July party. I went on a working adventure with my daughter to help her move into her new apartment before she starts law school. I discovered, while I traveled for The Scotia-Glenville Traveling Museum, the varied regions around the upstate New York area that until now were unknown to me.
During all of those hours of wandering I let my mind wonder, hoping to be inspired. To my disappointment no words jumped out of me begging to be put to print. But, a realization did occur. I have written, over the course of several years, my feelings, frustrations and the day to day surprises that helping an elderly parent with dementia can bring. Consequently, I feel it is time to share some of my words as they form into my forthcoming book.
Recently, I recalled a conversation I had with Mom on more than one occasion. This was several years before any of us suspected something was wrong with her.
“Rosemary, I seem to be forgetting things a lot.”
“Oh, Mom, that’s normal. Heck I forget things all the time.”
“Yes, but this seems to be more than normal.”
“Mom, I wouldn’t worry about it.”
Thus, I brushed her concerns away before she could elaborate more. I suppose I didn’t want to hear about anything being wrong with my mother. So I felt dismay when I recently heard a doctor on a news program say that many people know that they are having early signs of dementia. They realize something is not right. It pains me to think my Mom was alone in this knowledge and that I avoided that conversation more than once.
Eventually, my siblings and I did become aware that Mom was struggling and that something needed to be done. I recall vividly the day I entered Mom’s house to pack her suitcase and bring her to my home for what I thought might be just a long visit. It turned into so much more.
The following is an excerpt from:
A Slow Slide into Nothing
I arrived at the Indianapolis, Indiana airport, rented a car and drove to Wabash. As I pulled the car into the driveway and parked, I realized it was already warm for a day in May. I walked up the sidewalk; I could smell the fertilizer being spread on the fields just outside of town. My nose crinkled and I sucked in and held my breath so I wouldn’t smell the ripe aroma of manure in the air. When I stepped onto the porch, I expected to see Mom at the door, but, instead I had to let myself in. There she sat in the dark living room. I glanced around, remembering the salmon pink limestone fireplace that fills the wall at the far end of the living room, the family portraits, and my wedding picture. I waited for the years of childhood memories to come flooding back but they did not, could not as I looked at my mother. She looked frail, tired, and scared. Her clothing was dirty and full of stains. I was taken aback. How had Mom let herself get to this state? Mom always took pride in her clothing. She had dressed competently for her job as a high school counselor, later sternly as the city court judge. Now she wore clothing that did not match and food had dribbled down the front of her shirt. Seeing her this way was terrifying. I took a deep breath; I struggled not to appear shocked. Mom seemed embarrassed by the way she was dressed; the mess the house was in. Yet, she was unable to make any decisions or act to change it.
In a few short hours, it became apparent that Mom was far worse than I had thought. When she had mentioned on the phone she couldn’t pack her suitcase I assumed, it was not that she couldn’t but that she didn’t want to. I quickly realized she didn’t have the stamina, or the power to decide what to pack. Our past phone conversations raced through my mind, and I concluded she must have been lying to me about her lifestyle. I attributed her condition to depression about my father’s death and her forced retirement after losing her re-election as city court judge. Instead of haunting familiar places and reminiscing, I spent four days visiting Mom’s doctors, getting her car in working order, throwing out rancid food and packing. Mom sat on her bed and weakly told me which clothing she might want to pack. Most of her clothes were not clean, so I stuffed them in a suitcase knowing I would need to do laundry once we returned to my house. Just going through her medication was over-whelming. There were many duplicate prescriptions, some unopened bottles; others were empty with no replacement for them. I was frustrated trying to decide what prescriptions Mom actually needed to take and why.
Over the next few days, besieged with decisions about Mom, I was the picture of business on the outside. But, on the inside emotionally, I was falling apart. I suddenly realized that Mom was now the child and I had become the parent.
On the last day, I helped Mom climb into her packed car. We pulled down the driveway. She barely looked back. I gazed at the house I had grown up in, literally since birth, swallowed my tears, put on a good face for Mom and drove away.
One year ago in February our family gathered to bury and then celebrate the life of our Mother, Grammy, and Great-Grandma. One of my nieces, who holds a special place in my heart because she grew up spending many summers staying with my husband Paul and I, was in attendance with her family, including her infant son, Kian.
I wanted to hold Kian but, with all of the commotion I thought I would bide my time and wait until he was more receptive to unfamiliar arms. Besides, my sister Roxann and I were overwhelmed with still trying to pull off the calling hours, small family service and the celebration of life we had planned for the community, made more difficult as we worked from out-of-state. I felt like a loose thread being pulled from its stitches as I tried to hold myself together while racing from one spot to the next, answering questions, and solving small crisis.
I was also in the grips of the sorrow I felt trying to consume me as I said goodbye to my mother; one that was bittersweet. I knew she had been ready to leave the confines of her dementia ridden body, still, it was sad for those left behind grieving the woman we had missed for years.
Three days later as I settled into an uncomfortable plane seat for the return to my home I actually gasped in anguish. With tears clouding my vision I turned to Paul and choked out, “I never held Kian.” The prior crushing days, in fact, years, of my sorrow accumulated in the knowledge I had missed a wonderful opportunity to hold this precious child whose mother meant so much to me. I grieved for many months at my failed, once in a life time, opportunity.
It took over a year for me to finally be in the same room with the now toddling Kian as we celebrated the family milestone of a nephew’s graduation from high school. Of course Kian was adorable, how could he not be? Still in the stage where everything is new and exciting, he was mesmerized by all of the decorations. Joy filled Kian’s face as he played with balloons placed on the floor for him. His whole body shook with delight as he discovered yet more of the breathtaking orbs on a nearby table. Kian’s wonder and shear happiness enveloped everyone who had the occasion to observe him.
I too, watched with delight. At this point I was bidding my time for that split second when I could grab him and scoop him into my arms when he did not suspect it. I hoped he would give me at least a few seconds of his attention before wiggling free of my grasp. With that plan in mind I turned and became involved in viewing short videos created by his older cousin sitting beside me on the couch.
I felt tiny hands on my knees. Unexpectedly, here was Kian climbing into my lap. He wiggled up, as if he knew this spot of comfort. His small arms wrapped around my neck and his soft curls brushed my face as his head came to rest on my shoulder. Kian stopped the constant motion his little body had been consumed by and sighed. Instinctually my arms surrounded him as my heart thrilled with the weight of this child against me. The tears I had once cried at missing the opportunity to hold him now became ones of gratitude and joy. I clung to Kian and his gift of sweet toddler warmth. We were suspended there, in a crowded room, where the only thing I felt and heard was this baby I had loved and never held.
Kian graced me with his hug for a few minutes, time enough for him to catch his breath, then he was back to exploring.
I tried to secretively wipe the tears from my eyes as the room once again began to buzz around me. Even now, as I recall that my moment, elation still causes mist to cloud my vision; as I relive an instant of interrupted time so well worth the wait.
Prologue
I have been absent from my Blog for a while. In this away period I have been working on editing my book in between the call of my daily life. I am including the prologue to my book, a work in progress.
In the spring of 2007 my widowed mother left her place of birth and a lifetime of living in Indiana and moved to my home in Upstate New York. It had been apparent to me and my siblings for some time that Mom was struggling to live on her own. But, my mother’s independent streak and her fierce Irish-German stubbornness did not allow her to leave her residence of fifty years easily.
When Mom moved in with my family and me, I thought she was still grieving the death of my father, her husband of over fifty years. I had learned Mom no longer participated in the activities she once enjoyed; she rarely ventured out of her home. All signs of depression I assumed. Naively, I believed that once Mom came to live with me she would find a new direction in life from the love my family would give her. I hoped that my relationship with Mom would evolve into the nurturing, mother-daughter connection I had sought for years. Yet, after only a few short weeks it became quite apparent all of my assumptions were completely wrong.
Learning my mother had dementia, although not truly shocking, was not the ending I had in mind for our story together. Eventually, during the six years that she lived with or near me we did develop a new relationship. One I had not considered, but, still based on trust and love. Getting to that final rapport took years of struggle between us. In the beginning it was who is the child; who is the parent? Later, that trust was required to let a loving bond blossom into total faith that decisions made on her behalf were for the best.
My emotional journey also sparked a transition of my faith. My feelings about established religion had been evolving for several years. Soon after Mom moved in with me, I stopped my rare attendance at mass. My choice had nothing to do with my mother. Rather, it was a decision that had been growing within me. I felt more in touch with my idea of God when I was out in nature, or doing an activity with my friends or family. Mass became a ritual that I dreaded and consequently attained nothing from. Yet, the more involved I got with Mom’s care, the more aware I became of an inner voice guiding me. I am by character a non-confrontational person. Still, as I heard myself questioning doctors, working with insurance companies, dealing with family members and lawyers, I found the words coming from my lips sometimes were not my own. I had not thought to say them, yet there they were being said. I began to call my inner guidance my Angels. It was through this realization that my spirituality grew and I connected with these higher beings that were sent to guide and comfort me. I believe it was my Angels who first directed me to begin writing.
I did not write my thoughts down immediately upon my mother’s arrival. It was only after many months that the need to release my growing frustrations began to take shape. I joined a writing group at a local book store because I felt driven by my inner sense, what I call my Angels, to put my feelings into written word. During my first session I met a group of ladies and we formed a lasting bond that strengthened as we each transformed into writers. It was this group and our instructor that gave me the courage to record my feelings. Even then, I did not believe I would take my thoughts and turn them into the book that follows. As my writing developed, I realized my essays could be a comfort to those walking zombie like through the days of unknown dementia care and decisions as I was. Consequently, I continued in my pursuit of finishing this book not only for myself but for others who would walk down the path my mother had taken me. I hope it will bring them comfort and the knowledge they are not alone in their struggles.
To do justice to the 85 year life my mother led I have given you, the reader, a brief history of Mom’s life. I felt that was important so that you too can understand the sorrow I felt in watching this woman, who accomplished so much, slide into nothing.
The essays written about the journey Mom and I took together fall in chronological order. It is my hope that you will garner some camaraderie from my honesty, frustration, laughter, unexpected hurt and overall grief. This book is for all of us struggling together in what I call, The Caretaker Nation.
I like to collect quotes that at a particular time provoked contemplation or simply made me smile. Some passages have made enough of an impact to have changed my life. For example, to be gentler on myself or perhaps the words encouraged me to move forward with a dream I had been pushing to the wayside. One quote I found particularly relevant was the following.
“We must be willing to let go of the life we have planned, so as to have the life that is waiting for us.” Joseph Campbell
These words written together as one thought caused me to stop and reflect. I am definitely a planner. I sometimes plan out intricate details months in advance. On Sunday evenings I look at my calendar and plan the following week. I put to memory what I am doing. I look up how to drive to the school I will be working at on a given day. If I’m not teaching then I set up in my mind’s datebook when I will write, clean, do laundry or run errands. When it comes to running errands, I don’t just hop into my car. I plan a route that will eliminate crossing traffic and cut down on driving distance. I rarely go to the grocery without a list, which consists of an inventory of what I am having for meals that week and the ingredients I need. I plan because it is a comfort to me to know ahead of time what I need or want to do each day.
As I search back through my memory of myself. I try to recall, was I always a planner? In college I never pulled an all-nighter. I often had projects done a day or two before they were due. I understood even then, I did not work well under pressure. I jokingly tell others that when my now husband asked me to move to New York from Florida, not to marry, but so that we could be closer to each other, I packed my lime green Jetta and drove. The real truth is I recall agonizing over the decision. Eventually, my older sister who I was living with at the time, said; “just go, you are young, and have nothing tying you here.” With no true plan, I left, a huge leap for me.
Recently, as I cared for my mother I gradually began to accept the idea of Joseph Campbell’s quote. When Mom came to live with me and my family I was at a turning point in my life. My two daughters were either in college or heading there. My husband and I were soon to be empty nesters. I had many proposals for myself running through my mind. I had great ideas for finding my midlife career. None of these mind diagrams included being the caretaker, then guardian and eventually hand holder of my mother as she slid into dementia.
Certainly, I knew that taking my mother into my life was the right thing to do. Soon afterwards my frustration blossomed inside of me as I fought against the reality of my life and what I had envisioned. At times I resented my mother then, I chastised myself for feeling that way. My aggravation at not achieving my perceived goals grew. I would push myself down the path I thought was my destiny, only to be waylaid with the more insistent care of my mother. One day I stumbled onto the aforementioned quote. It was a slow process of comprehension, like a flower slowly blooming until the vivid colors demand your attention. That led to a recollection of words of what another sister often repeated; “If what you are trying to do keeps getting blocked with obstacles, then maybe your guardian angel is trying to tell you to go another way.” I realized it was time to let go of the life designs I felt I wanted or were required by me to accomplish. Instead, I unhurried my pace. I slowed my thoughts and my relentless running towards an objective that was frustrating me. I listened to the very subtle guidance from what I consider to be a higher being. I watched for signs, sometimes confusing in their very nature, but a sign never-the–less.
Over the course of a book club meeting someone mentioned a new writing class that was to begin soon. I heard, but felt I couldn’t take the time. While reading the newspaper there again was the suggestion of this writing class. Finally, because most signs need to be very obvious to me, a friend sent an email with the subject line, thought you might be interested in this. Why she thought that I’m not sure. At least this time I took the hint and signed up for the class. That small gesture has led me to follow this new life course of writing. Something I purely enjoy.
More opportunities opened up once I let go of my preconceived destinations. Several years before, at the persuasion of a friend, I had applied for a position as a teacher for The Traveling Children’s Museum. Nothing came of it and as I became more involved with the care of my mother the idea was swept from my mind. When my life slowed somewhat from the attention I needed to give to Mom, completely out of nowhere I received a phone call from the Museum. Now my friend was in the position to hire and she had found my long ago resume buried under stacks of the previous administrators papers. “Was I still interested in the job?” I laughed, “Of course.” Because I had waited and not pushed to reach a goal when the goal was unachievable my reward was great. I love my job and now have the time to commit to it.
I certainly don’t want to lead you to believe I think life comes to those who wait. No, in my interpretation of Joseph Campbell’s thought I don’t believe he meant for us to do nothing and expect our lives to materialize in front of us. I do think his intention was to allow yourself to open up to opportunities that come your way. Even if those possibilities have nothing to do with the course you have chosen to walk down.
As a planner I have struggled to let go of my big ideas for my future. Now, it seems I don’t even remember exactly what they were. I do know because I allowed myself to find the life that was waiting for me instead of the one I planned, I am happy and look forward to allowing more doors to open.
Recently, I went on a road trip with two lady friends. A long weekend spent being a groupie for the band, Trial By Fire. My friend’s son, and a young man I have known since he was a baby, is a member. We had a great time, but quickly realized staying up until the early hours of the morningwas tough work. We were no longer the college students partying away our stress over upcoming finals. Instead, we were three older woman escaping the confines of our daily lives. Our getaway was a needed escape from being the caregiver for a very ill spouse and the sudden, unexpected, responsibility of a mother and nephew. I was the one that had no true commitments. In February I had passed the one year anniversary of my dementia bound mother’s death, and with that, a release to determine what I want to do with the rest of my life.
We three adventurers set out on a journey deemed, Moms Gone Wild. But, how wild can you get in a mini-van? The first night earplugs were distributed so that we could all attempt a good night’s sleep. On Friday we awoke and piled back into our vehicle for a six hour drive. We arrived in Greensboro, North Carolina in time to have a beer while the band set up and did a sound check. I got a thrill of boastful pride when we told the bartender we were related to one of the musicians. That night at the show, with the music thrumming in our chests and the crowd clapping and screaming encouragement to the rock group, we decided to celebrate with a jello-shot. We couldn’t resist as the somewhat solidified alcohol came in a huge syringe. I’ve been in bars before where a band was playing. But, this was different. I delighted in watching the crowd watch our favorite band member. I pondered on how it must feel to be on stage and realize I was bringing such fun to the crowd. What a rush it must be. The night finally ended, for us at least, as we made our way to our beds around 2 a.m. On Saturday afternoon, after two more hours of driving we landed in Charlotte, North Carolina and began the whole process again.
Along the journey, of our weekend away, the three of us shared many thoughts. We reflected on the circumstances of our lives. It never occurred to any of us to complain about what life had thrown our way. Instead, we accepted the obligations and knew we would not do anything differently. Still, that does not mean we did not question what the future would hold and how that now would be so different from what we had envisioned. Yet, we understood we are not unlike so many of our generation, taking on the care of aging parents just when we were ready to enjoy empty nest adventures with our spouse. Or perhaps, as my one friend, realizing those golden years will never come for her and her husband.
That is why this weekend away was just what the doctor would have ordered if prescriptions can be written for such an excursion. A few days in which we came close to reliving our youth; the one that seemed so burdened at the time and, as we have come to understand, no where near that complicated. During the weekend the three of us spent the days enjoying the warmth of the southern sun and hanging in bars with the band at night.
But real life rushed in and on Monday we made the grueling 15 hour endurance test back to our homes. I awoke Tuesday feeling disoriented and exhausted, only to look out the window to an inch of snow on the ground. Welcome back to reality.
Rosemary Christle-Renaud 