alzheimers

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The Truth Many Times Over


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.”

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Summer Wandering and Mom


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.

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An Interupted Moment in Time


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.

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What Can I Do?


Once again, we Americans sit stunned in front of our TVs and wonder; what can I do? 

It has been demonstrated with pictures and video the brave persons who ran to help those in need during the crisis in Boston. We heard of doctors and nurses who voluntarily showed up to work and runners who offered to donate blood.  But, what can I do?

As is the norm for so many of us we get caught up in daily living.  We work to pay the bills.  We rush out the door to our jobs and hurry the day along until quitting time.  We run home to the commitments we have signed ourselves up to do.  We become irritated with the weather when it hampers our agenda.  We rarely stop to notice the trees blooming in the spring.  We ignore their summer shade and miss their glamour in the fall.  In the winter we forget to sit and listen to the silence of snow as it falls. We overlook the laugh of a child or the gentle touch of our spouse.   In short we miss life.

In forgetting to appreciate the many wonders taking place around us, we disregard the struggles of others.  If you think you are having a bad day remember the person standing next to you may have it worse.  The idiot who butted in line is perhaps worried about his daughter lying in a hospital with cancer.  The slow-moving senior is probably grieving for the loss of their partner in life.  Your neighbor, who can’t seem to take care of their lawn, may have more pressing issues, like paying bills since the lost of their job.  Every day, we come across others who are losing a friend to a terminal illness, or suffering from one themselves.  We run into adult children caring for a parent with Alzheimer’s.  We encounter people who are going through a bitter divorce, or losing their child over a battle they can’t find a solution to.

You don’t know what those around you are going through, how their day feels to them.  You may not understand the grief they are experiencing as they try to maintain their everyday lives, one that may be swirling so quickly around them, they are dizzy with fear.  But, here is what you can do.

Be the person who is gracious.  Smile and greet strangers as you go through your day.  Open doors for others.   Let the car trying to slip into your lane in front of you, in.  Tip your waiter well, even if the service was poor.  Be patient with the older person moving slowly and holding you up as you hurry through your day.  Take the time to actually listen to people as they talk to you.  Simply acknowledge that the person waiting on you, ringing up your purchase, answering your questions, or being rude is a human being.  A smile for a weary soul can make the difference of how their day will feel to them as they crawl into bed at night.  A simple gesture of kindness can give enough light in the haze of anxiety to push the receiver towards feeling some positive.

I understand small gestures can have a large outcome.  On the days I felt low, as I drove to visit my dying mother.  Even as I felt the glow of the sun and tried to enjoy its warmth, a smile from a stranger sometimes made all the difference.  Just that small act of thoughtfulness restored my faith and allowed me to believe that things would get better.  As I fought to get through my day, if I came across a rude person, I reminded myself; you don’t know what they are going through in their lives.  I would try to return their impoliteness with charity on my part.  Because, I hoped they in turn would be gracious to the next person.  Small deeds can lead to tiny breaths of hope, which in turn may lead to big outcomes in the life of one or many.

What can you do?  Kindness to others is my simple suggestion.

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Quotes and Contemplation


????????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.

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A Tiny Rosebush


86th BirthdayI was in the grocery checkout line picking up some last-minute items for dinner.  It was Sunday and our first weekend of skiing and trying out our new seasonal rental was coming to a close.  I was tired, but feeling good with all of the fresh air and renewed friendship that had transpired over the past two days.  As I was piling my items onto the belt something to my right caught my eye.  I turned and there in front of me were miniature rosebushes, the kind you see this time of year in the stores.  In that instant my mood fell and I began to cry.  Not big sobs but my eyes welled with tears.

A tiny rosebush, similar to this one, was the last gift my sister Roxann and I gave to our mother before she passed away last February.  A small token meant to provide comfort and perhaps help guide her way to heaven.  At least that was a tale we had heard.

When my mother died, I was more than ready for her to leave this earth.  She had been struggling with dementia for years and had spent the last six of them either living with me or near me.  During those years I was the one who watched, almost daily, as she slid into dementia.  Consequently, I knew she was ready and most of her children agreed, that her struggle with this life should end.  After she passed and the initial exhilaration of having more free time ran out, I found myself grieving for the mother I once knew.  I grieved for the mother who taught me to cook as I stood in a chair in the kitchen stirring tomato soup.  I grieved for the mother who found her calling working with students as a teacher and counselor.  I grieved for the mother I had hoped I would connect more with me as an adult, but we never quite got there.

Grief is a funny thing.  You can be enjoying yourself and the next moment, because of a song, or a scent or a rosebush, your mood changes and you find yourself sad and crying.  Causing those around you to worry and question what has just happened.  These moments also make me, at least, realize I am not doing as well as I thought; that my recovery over the loss of my mother will continue to take time.  Memories remain with us for our lifetime, both the good and the bad. But, I hope, with time, my sadness will wane and my memories will become more of gladness as I remember the special moments my mother shared with me.

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Thanksgivings Past and Present


Thanksgiving is a favorite holiday with my family.  We love to cook.  Cooking, to me, is a release of my pent-up creativity.  I spend hours thinking of the menu and the recipes; combing cooking magazines and websites.  But, somehow, I always return to our traditional menu for the big holiday.

I would have to say my favorite time during Thanksgiving Day is being in the kitchen with my daughters.  Both of them have picked up my love for cooking and it is a common bond we share.  Some families discuss politics, some sports, my daughters and I talk recipes.   It brings me great pleasure to watch as they find a new recipe and tweak it to make it their own.  Cooking together is a tradition that goes back to my mother and me side by side in the kitchen.   One of my first memories is standing on a chair, stirring tomato soup, as my mother made grilled cheese sandwiches for the family.  It is no wonder that combination is still one of my favorite comfort foods.

My mother was an amazing cook.  Many times, when money was scarce she could still make an incredible pot of chicken noodle soup or my favorite, beef vegetable.  Her forte was fried chicken or round steak with heaping batches of mashed potatoes oozing butter.  Later in life, when I tried to duplicate her recipes for the chicken and steak, I realized she pretty much deep-fried them in butter.  No wonder they tasted so good.  It took me many years to modify her dishes to more healthy servings.  Still, from my mother I learned a love of creating in the kitchen.  The joy it brings to serve a nutritious, delicious, meal to family and friends.  The feeling of giving a part of yourself; a creation sent from the heart.

This is my first Thanksgiving without my mother’s physical presence here on earth.  I say it that way because my mother passed away last February of dementia.   However, for the last few years she was alive she did not truly participate in the rituals of the holiday.  The final time she came to my house for the big meal, she was anxious about not being in the routine of her assisted living home.  She did not enjoy the loud laughter of the many guests and family that mingled throughout the kitchen and family room.  She would not take her eyes off me because my face was the only one she recognized.  Just as we were carving the turkey and placing the food on the table, she demanded to be taken home.  No attempts at persuading her otherwise worked.  So we wrapped the turkey in foil, placed dishes back in the oven and my daughter and her cousin drove Mom home while the remainder of us waited with another glass of wine.  As my mother walked out the door, I felt in my being she would not spend another holiday with me in my home.  It was too much for her.

There is sadness in knowing she and my father are no longer with me.  Thanksgiving 2000 was the last time both my parents were at my house.  Dad passed away the following February.   In my mind I remember the holiday as being perfect and that is the way I like to leave it.  Mom watched as I bustled around the kitchen, Dad helped set the table and clean up.  The ritualistic routines Mom and I had established so many years before in my mother’s kitchen became mine.  That final holiday together Mom and Dad were content to pass on the family traditions to me and my budding family.  And so, I hope that with this Thanksgiving and many more to come I will be able to establish old and new traditions with my girls and create perfect memories.