dementia

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Changing My World


“When you’re done with this world, you know the next is up to you.” John Mayer

It has been a year since my mother passed away; Twelve months of me reclaiming my life. Although, I’m not sure reclaiming would be the correct term. Instead, I think I am rebuilding my new world. That is why John Mayer’s words resonate with me. The end of my era as my mother’s guardian also coincides with the end of my era as a full-time mother. My husband and I have successfully encouraged our daughters to grow their own wings and leave the nest feeling confident in their lives ahead. Kudos to us. So, the next is up to me. Where do I go from here?
The good news is I can make my choices based on over a half century of living. I certainly have life experiences, and I plan on using them to make, what I hope, are wise decisions. My husband and I live a good life in suburbia. We have enough to enjoy pursuing the activities we like to do. Because we have accomplished this goal, personal happiness is my next biggest objective.
That desire is encumbered with the many heartrending aspects I have in my life involving those I love. Friends and family, who have joy sucking circumstances they are facing. The kind that leave you searching for sunshine even when it is sparkling through your window. I realize that, especially as we mature, my situation is not unique; how I go about living my life, that is what is exclusive to me. I want to be there for those I love and support, a hand to hold, the one who listens without judgment. But, it is also my wish to be able to share some happiness with them. I want to encourage a new thought process, to not dwell on the injustice, if you will, of their lives. Instead I would like to concentrate on the bright spots in life, the obvious and more importantly, the simple wonders of everyday. I want them to feel, we are in this together.
Part of finding my new world is discovering what makes me happy, my purpose in life. Writing, I know, is definitely on the list. My part-time teaching job brings me joy, as I travel from school to school bringing a field trip to classrooms with The Scotia-Glenville Traveling Children’s Museum. I love both of these aspects of my life’s journey. I also appreciate the fact I don’t have to worry about a generous income from either.
Realizing these thoughts, I have decided to practice the art of listening to my feelings and wants. At times, putting my needs in front of others. Something, we as woman or perhaps parents, don’t always get to do as we raise our families or care for others. I have found my needs are not far from where I have been, they have just increased in their importance. Spending time with friends and my sisters is one of the most important aspects of my life. Sometimes, I have to travel to do that, but I am growing more accustomed to the idea that the cost can be outweighed by the joy the trip brings. After all, what can bring more pleasure to your soul than hearing the laughter of those you love, or feeling the comfort of a much needed hug? I am also working on having a more adult relationship with my grown daughters. All involved must change our thought process to include a more give and take relationship. Not the one that served us well as they grew, of parent giving and the child taking. This course of action will take time but I am willing to wait for the fruition of my efforts to develop.
I have learned many lessons during my 54 years of life experiences. My journey has taught me that I will gain friends and lose them. But, more importantly, to hold onto the lessons I learn from those experiences. I hope I taught my daughters the self-strength and compassion it takes to care for your mother as she slides into the nothing of dementia. I know with the leadership of my sister I have gained a new spiritual strength; learning how to accept the guidance of both earth angels and heavenly ones. Building and constantly working on a relationship with my husband is still a continual part of my life. Together we have experienced the exhilaration of holding a tightly blanket wrapped newborn, and the daunting task of helping her grow to adulthood. I have come to understand that some of the most important relationships in life are the ones with your sisters, whether they are related to you by blood or by experience. The love and companionship of those women have, over the years, given me the courage, strength and self-confidence to continue to move forward with my life.
My next world is up to me, and I am determined to make it happy. I hope to find the positive even in a negative situation. I promise to continue to build my self-confidence and make choices based on my wants. I have realized that sometimes putting yourself first, in the end, can be beneficial to those around you. I have come to relish the bliss it brings me to watch myself accomplish goals I have recently set for myself. It gives me the strength I need, to in turn wash my friends and family with the waves of my happiness. I hope it brightens even a part of their day.

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Today I Need To Write


Recording an essay for a local NPR show.

Recording an essay for a local NPR show.

Today I have a need to write. My fingers won’t feel content until they are cruising across my keyboard. Sadly, my brain has no compelling issue I need to expel. So I am sitting here, at my computer perusing websites, waiting for that ding and the notice I have another email that will perhaps inspire me.
What is it about writing that allows me to feel a sense of accomplishment? A few years back I ran into a friend from my junior high (middle school) and high school days. I told her I was writing a story about my mother and me. She replied, “That’s great, you always did like to write.” I smiled but walked away stunned. I did, I thought. I then remembered the variety shows my sisters and I created. We gathered the kids in the neighborhood and gave them each a part in the acts we had spent days writing. I believe our programs were loosely based on The Laugh In Show. The stage was the open concrete parking area at the end of our neighbor’s drive. Our parents humored us, I suppose, by sitting in lawn chairs and clapping at the appropriate times.
I still have stored somewhere, the Christmas poem I wrote in seventh grade that won the school newspaper’s first prize. That was my first accolade for writing. I recall my high school teacher telling me my papers were always her favorite to read; much more entertaining than my fellow students dry essays. She also added I needed to watch my punctuation, a problem that still plagues me today. (Thank you inventor of spell and grammar check)
Consequently, I realized that my friend was correct. I have always enjoyed writing and as an adult I felt it was time for me to return to that love. I joined a writing class at East Line Books in my hometown. I was just beginning my journey with the care-taking of my mother as she slid into dementia. Every week I tapped away on my keyboard, thanking Mom for making me take a typing class. My emotions, held inside as I went through my week, poured forth and appeared in black and white on my computer screen. Often tears trickled down onto the keyboard letters as I discovered those feelings I had so carefully buried. The writing of the essays was obviously therapeutic. I continued with the classes over a period of two to three years. Eventually, some of the ladies I met at the book store branched out on our own when we realized our essays could materialize into book form. We would meet, not only to critique each other’s writing, but also offer support. My writing ladies, as I like to call them, have been generous with their friendship and encouragement.
The idea to blog came to me early. But, sadly I didn’t act on the notion until much later on my writing path. Blogging gives me a chance to express ideas, feelings, and thoughts in a very short form. I truly enjoy the thrill of having others comment on my essays, and I love gathering followers. How surprising for my thoughts to touch a stranger, enough so that they decide to comment or follow me. I somewhat understand an actor’s need for applause at the end of a performance.
All of these thoughts lead to today and my fingers feeling that they require movement over a keyboard. Today, when my thoughts, jumbled as they are, must come tumbling out and be placed for all to see in black and white. Feel free to comment, I love the applause.

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Remembering February


For close to a year the month of February has been looming just outside of my conscious.  February 21, 2013 will be the one year anniversary of my mother’s death and the 12 year anniversary of my father’s death.   I have prepared myself to be sad.  But, what I haven’t prepared myself for are the down times leading up to that day.

On January first of 2012 I was celebrating the start of the New Year with friends.  We were at a bar having chicken wings and beer.  That was when I received the first call about my mother not doing well.  With the help of my sister Roxann, who flew in from Georgia, we spent nearly two weeks watching my mother slowly succumb to pneumonia.  Then, miraculously she pulled herself back from the brink of death.  Bewildered from what we had prepared ourselves for, Mom’s death, and reality, Roxann wearily went home.  As January faded into February Mom improved to the point where some days she didn’t need the oxygen.

scan0001One weekend in February, I visited Mom on a Friday.  I even took her picture to send to my sisters because Mom looked so good after her close call with death.  Unbelievably, that following Monday I was called by the nursing staff because Mom was once again ill.  The change in Mom over the weekend was startling.  I saw the look of panic in her eyes as she struggled to breathe.  With the help of the nurse practitioner, who prescribed, and then the nurse, who administered the morphine, we were able to ease Mom’s discomfort and fear.  I sat with her most of the day until she fell asleep.  I left knowing I would need to get many tasks accomplished before I began, once again, waiting with Mom for death to finally relieve her of her painful existence here on earth.

The next morning, as I prepared myself and my home for the long hours of sitting with Mom the nurse called.  Mom was worse.  Since Mom’s illness the month before, her children had resolved not to continue the brutal cycle of stopping the pneumonia, with antibiotics, only to have the illness return very shortly afterward.  We were committed to shortening Mom’s downward spiral towards death for her sake, instead of prolonging her dementia bound life for us.  But, I won’t lie it was difficult to see my mother laboring to breathe and the fear in her face.  I gave the nod and morphine was administered so that she could rest easily.  That afternoon the nurse practitioner told me this was it; Mom would not recover this time.  I called Roxann.  She made plans to return to Upstate New York.

As suddenly as Mom had become ill, she died.  She died before Roxann could arrive.  She died within 48 hours of my initial phone call.  No one on the staff, not even the nurses, thought she would die that quickly.  Yet, I had a feeling all of that day, because I sensed my dad in her room with me.  I understood that he had come to take her to their afterlife.

I remember many aspects of those long days in January and the few days in February that led to our extended family standing in a grave yard, once again sheltering against the biting cold winds of an Indiana winter.  It is with those days ingrained in my subconscious that I sometimes find myself crying for no apparent reason.  Why certain songs can turn a bright day into one of melancholy.  My conscious mind continues to check items of my list of tasks to accomplish.  I go to work.  I make dinner.  I admire the beauty of the winter blue sky.  I enjoy the company of friends, the stimulation of a good workout.  Still, I never know when or why the tears will come.  They just do.

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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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Heroes Big and Small


Recently, I watched an episode of Glee (yes, I’m a big fan) where the song Heroes (David Bowie) was sung.  The whole episode was loosely based on the idea that some of the characters had started a club of super heroes.  It turns out they were not super, but heroes never the less.  While listening to the song, preformed by Blaine Anderson (Darren Criss) and Sam Evans (Chord Overstreet) I began to think of the many heroes I know and I realized, I can identify many.  I know of women who have lost children or husbands and yet kept their families together; others who battle cancer and keep a sense of wonder for this world.  Parents who watched a child slowly recover from a horrendous accident.  In my mind these people are all heroes.  But, specifically, I want to talk about an incident that happened recently.

I have a friend with a critically ill husband.  Doctors, even after 4 years, have not been able to determine why he can no longer walk, talk, and is continually dizzy.  He has gone from an over six-foot man who loved his boat, his sports car, work, friends and his family, to being confined to a wheel chair and his recliner, unable to participate in life.  My friend is her husband’s full time care giver.  In my mind she is a hero to him and her children.  Her life is difficult; she struggles to remain positive, to not lose patience, to not cry all day.  In turn, my friend has her hero, her mother.  My friend’s mother moved from her home to live with her daughter and provide support, help when she can and companionship.

As far as I can determine heroes come in all shapes and sizes.  Their accomplishments can be big, as in saving someone from a burning building.  These are the heroes we hear about and rightly so.  But, most heroes perform small tasks.  They provide hugs, a meal, an ear to listen, and a shoulder to cry on.  They may run errands or cut the grass because they notice it needs to be done.    I know how important these small gestures can be.  I relied on my heroes many times as I struggled through my journey with my mother and her slide into dementia.

Last night I was given the opportunity to become a super hero.  My friend’s beloved cat escaped from her house.  Scotch is a cat with a big personality and he provides his hero work of fun, silliness and fur therapy in a house missing most of these qualities.  My friend texted a note of panic about her cat’s disappearance.   I called her and heard the alarm in her voice and immediately my inner super hero could be heard saying,

“I’m on my way.  We’ll find him.”

I grabbed my daughter from her room and together we jumped into our super heroes’ car and sped out of the driveway.  But, before we could even make it past the neighborhood entrance my friend called again.

“Scotch is home.” She said with a catch in her voice.

“Do you still need me to come down?”

“No, I’m fine,… well actually can you come and have a glass of wine with me?”

And so, I took my daughter home, left my super human powers of cat recovery there and drove to my friend’s house.  We talked about Scotch and how bad he was that night for normally being such a good kitty.  How he had scared us.  She cried a little remembering how desperate she felt with the thought of losing the joy her cat brings her.  My friend and I shared our wine; she took big gulps of air  to calm herself, trying to regain the control she tenuously holds onto.  I was glad I got to be, if not her superhero, her small hero for a while.

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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.

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Court Date


I have been working on editing my upcoming book, A Slow Slide into Nothing.  Below is an excerpt about an experience Mom and I had together.

    Finally, the day arrived for Mom and me to sit before a judge and for her to explain her concerns.  The small judge’s chamber was filled with lawyers.  There was my lawyer, Mom’s lawyer, the lawyer appointed as her guardian by the courts, the judge and the court recorder.  I was nervous because Mom had been running late when I arrived to pick her up and then was too tired to dress herself.   I ended up having to put her socks and shoes on her.  I had felt rushed, knowing it was my responsibility to get us both before the judge on time.  We sat down; the judge looked at both of us solemnly.

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An excerpt from my upcoming book


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.

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Step back, Let it Go


My impression of the animal known as the Badger is that they are small, fierce, strong, and determined.  Once they have latched onto their prey they do not let go.  My sisters and I often laugh about a trait we call “The Badger.”  We are referring to a quirk of our personalities, the one where we, like the Badger, lock onto a thought or task and become fixated.  This trait can be helpful, for example, if you need to finish a task.  I make lists.  I relish being able to take pen in hand and check off items on my list that I have accomplished. Once the list is completely checked off, I start a new one.   I struggle with my husband, who likes to start tasks but not always finish them, at least in a reasonable manner for me.  We have been working on remodeling our house.  This project, although quite large, is a year and a half in the making. We have very little left to accomplish. But, my husband has lost interest and moved on.   My list sits waiting for me to check it off.  It is covered in coffee stains and more than once I have had to search to find it under piles of papers on my desk.  The “Badger” has lost patience and won’t rest until our final paint stroke is finished, and the final nail is hammered.  Then, pen in hand the “Badger” will check off the last items on the list and it will be time to let go.   The problem is getting my husband to cooperate.

Being a “Badger” can have its drawbacks.  I can become fixated with something, and I am unable to let it go or move on, even though I have no control over the final outcome.  An example would be, trying to help a friend or one of my daughters.  They ask for advice, I give it. But, then I obsess over trying to help them come to their conclusion on my time frame, not on theirs.  The “Badger” wants to come to a quick decision, and then move forward.  But, sometimes these decisions can’t be resolved that easily.  I have to wait because time is needed to find a solution.  This is where I struggle to take a step backwards.  I tell myself walk away, you can’t control this.  Your job is done.  But, I continue to be gripped by the issue.  I worry that the decision they make will lead them down a path that I feel will be more difficult for them.   I want to be in control and walk them through to a happy, final conclusion.  Of course, that would make the decision mine, and it is not on my list to check off, it is on theirs.  So the “Badger” must let go, a difficult maneuver, one that I am still laboring to learn.

I am also working to let go of my mother.  She passed away last February of dementia.  It was a six year slide into nothing.  I know she is in a better place.  But, I miss her.  Not the woman she was at the end, but the woman she was before dementia.  Mom’s passing was a blessing.  Yet, I regret our family didn’t get to enjoy her more, and, that my children lost their grandmother.  Mom and I did not always have this amazingly strong bond, but we had established a loving relationship as I grew into an adult.  Sometimes, I long for advice.  I miss her matter of fact explanations of life.  I have found becoming the “adult” generation is difficult.   I realize this is a normal passage of life, but, the “Badger” in me wants more time to be able to check off of my list things I enjoyed with Mom.  I wanted more time together doing girl stuff.  More quiet talks. More discussions about politics and books.   More laughing at silly things.   I wanted more.  That is a list that the “Badger” had to bury.

This morning I was struggling with an issue that is not mine to make.  Consequently, I did what works for me.  I went to nature.  It was chilly, near 50 degrees, as I hopped on my bike and took a ride on a wooded bike path near my home.  The rush of the cool air produced goose bumps as I headed down my first hill.  My mind was screaming questions and answers to me.  As I rode, over hundreds of fallen acorns and the first leaves of fall, my brain began to quiet.  My thoughts began to untangle and resolve themselves into categories.  It was at the end of my ride that I let the “Badger” grab hold of issues I can check off my list and I forced the “Badger” to let go of all others.  I just hope I can keep the “Badger” in control, today.

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The Caregiver Nation


It seems lately that everyone who twitters has their own nation of followers.  Ryan Lochte, the USA Olympic swimmer calls his followers, the Lochte Nation.  Appropriate.  I follow several Purdue affiliates, and I suppose I am a member of the Purdue Nation.  In fact I like that idea.

Recently, it occurred to me we need the Caregivers Nation.  If you are a parent then you are a Caregiver.  But, talking with woman my age, those of us with aging parents, I find we are more than just caregivers to our children.  We have become the caregivers for our parents.  It seems almost daily someone I know brings up the fact that they are finding themselves having to do more for their parents.

I can certainly relate to this dilemma.  I recently lost my mother to dementia.  But I spent six years prior to that taking on increasing responsibilities for her as her condition declined.  When I hear someone talking about their parents, with that desperate tone to their voice, I feel compelled to help.  Perhaps it is just to listen to them vent their frustrations.  Maybe I can give some advice based on my past experience.  Mostly, I want to tell them, this frustrating time will pass.  Take the time now to enjoy what you can about your parent.  Find things you can do together.  Share their laughter.    You will find it difficult to step up to the parental role for your parent and they will struggle to let you become their caregiver. Consequently, bring in as much help as you can.   Be patient, your parent is frustrated and scared, just like you.  Some days will seem to stretch on forever.  Some days you will think, I can’t sit with my parent one more day and struggle to find something to discuss.  On those days just be there, hold their hand.  You can not be all things, but you can be their companion, their rock to hold on to as they flounder into the sea of dementia.

My mother gave many gifts as she fell to dementia.  One was to look me directly in the eye and tell me she loved me.  Something she had not really done before.  It happened on one of those frustrating days when no matter what I said she just looked at me blankly.  Then from nowhere, as if she had been struggling to say this for sometime but could not figure how to do it, she turned to me and said, “I love you, Posey.”  I melted.

But, before she reached the point of only sitting in her room and staring into space, I  tried to find something positive for us to concentrate on, through each of Mom’s stages.  In the beginning, Mom and I went to lunch.  I took her to get her hair and nails done.  It was difficult getting Mom out of her home and to these places.  She struggled to remember how to get in and out of the car.  She didn’t recall how to put on her seat belt.  I found it was like trying to move around with an infant, but more difficult because I couldn’t just pick her up and carry her.  Besides, I wanted to leave Mom with some dignity.  When she  no longer felt comfortable leaving her home, we did puzzles, and watched day time TV.   With each step down in Mom’s cognitive skills she and I adjusted to what we did for enjoyment.  And, in the end, when Mom sometimes did not recognize me, we sat and held hands and watched the other residents move through her home.

Consequently, yes, I feel I have a kinship with the Caregiver Nation.  We know who we are and we know that it is not an easy life.  And, it is a life that many of us have no choice in whether we will join.  Together we will get through this stage of life and, with any luck, move into the next.  Whatever that may be.