I like maps that have a little figure or symbol that says “You are here”.  It’s much easier for me to see where I am going, if I know where I am starting from.  The maps in large malls are especially important,  because they help me find shoe stores. Just get me to the shoes, and I am a happy camper. I wish I could print a map that showed me where I parked! Timelines of historical events are also good visuals for me. Besides the War of 1812, I am a little fuzzy on the “when” of historical events.  My own life timeline could show me the order of events in my lifetime. and how I got to 63 years old. I wonder with so many events each year, how one dot can hold it all.

Time and place are ways I use to locate my lost self. For my first 28 years I lived in Iowa, but on May 13, 1980 I moved to Fort Collins. The “here” in “You are here.” changed from Iowa to Colorado, so 5/13/1980 is a big dot on my timeline.  Colorado is my home, but I still say I am going “home” to Iowa for a visit.  Before and after….  Before October 7, 1980, another big dot on my timeline, I was not anyone’s mother. On 10/7/1980, I became my son Tyler’s mother.  My emotional life timeline is a whole different animal, and seems independent of time and place.  Where is “home” in my heart, and how old do I feel?  When did I first feel like a mother?  My emotions are messy and unruly, and I can’t locate them on a map or timeline.  I feel lost and decide to visit Roger.

Roger does not know what day it is or where he is at.  He can’t read a clock or calendar, and points on a map are just points.  His dementia makes time and place fluid, and I don’t try to orient him to reality.  We stick to the basics, like is it cloudy or sunny, warm or cold,  or is he hungry or not hungry, tired or not tired.  These questions help to anchor him, and as I answer these questions for myself, life gets very simple and crystal clear.  I have a large framed poster above my mantle that has a big bullseye on it and the words: “You are here, be present”.  Roger is my time and place. I am here and present.

Adult coloring books are very popular now, and in a moment of weakness I bought one, maybe two, and could have been three.  I don’t dabble in anything.  I really immerse myself in a new interest or craft, and some would say I become obsessed.  They may be right; but don’t tell them I said so.  Right now I have a mountain of markers on my kitchen table, and I was deciding between “battery charged blue” or “blue” for a small detail on a flower.  Of course,”battery charged blue” was my final choice. The designs in the coloring book are usually very detailed with lots of lines and small spaces.  There are claims that adult coloring is calming and can produce a meditative state while the user concentrates on coloring the designs.  I admit that I lose track of time while coloring, and I am very focused on choosing colors and filling in the design.  My worries are often forgotten because I need to decide if “tomato” or “cranberry” red is the color for the job.  I am mindful of the moment, so yes, I quess it is meditation for me.

Some of the pleasures I get from coloring are all about power.  Choosing which color to use, and where to put it are my choices, variables under my CONTROL.  If I am not happy with my color choices I can always buy more choices.  LIFE does not change the design I am coloring when I am halfway finished; there are no nasty surprises.  I can quit coloring when I am tired.  I don’t have to create the intricate design; I simply start coloring and try to stay within the lines. If only life were so easy….

I carry the responsibility for creating my own life map, and both the freedom and burden of choice.  Unfortunately, I am powerless to change anyone else.  The only variable  I can control is myself.  Reality is that sometimes I even lose control of myself, so that’s the ultimate powerlessness. I can’t move people around like color markers, they make their own path.  So what if I have a million choices, the odds of me hitting the jackpot of the “perfect” choice are very low.  Sure I can change my mind, or even decide to make no choices; but the buck stops with me and I know that I am responsible for my own happiness.  As the years fly by, I have a greater sense of urgency to choose “my” colors and get busy coloring and living. I have a lot of gray and black that I certainly did not choose, and I can’t throw them away, or color over with pink.  I need to accept all the colors I have, and that I can’t buy different colors or stop because I am tired.  So I simply start coloring and try to stay within the lines.

I was excited to see the lunar eclipse and the big, red moon this past Sunday night.  At 7 o’clock, the big moon was low in the sky, and washed in red.   My friends and neighbors were looking with me, and “Wow” and “Awesome” were about the only words spoken. Later, I watched the lunar eclipse, and tried to grasp that it was the Earth that blocked the light of the sun, and caused the shadow that darkened the moon. My only role was to witness this incredible happening, and realize how little I knew about my home, planet Earth.

Roger likes to “read” question and answer books, and I love to read them to him. I say “Wow, I didn’t know that!” a lot and I imagine feeling the highest temperature ever recorded on Earth, a blistering, 136 degrees Fahrenheit. Often the questions are simple like “Why is the sky blue?” or “Why are flamingos pink?”, but the answers are not simple. Try and explain how the pit gets inside the peach, and you will understand what I mean!  I am humbled by how little I know about everyday things. Every Fall the leaves on my neighborhood  trees change color and fall to the ground, and I don’t know why. What really bugs me is that I bet I knew why when I was 9 or 10 years old, but at 62 I don’t remember.

Questions and more questions!  I have lots of questions about my inner worlds, but even fewer answers. My spiritual and emotional worlds totally baffle me, but I have not been able to find a question and answer book for these  topics. Question: What is love?  Answer: Love is not an animal, a vegetable, or a mineral. Love is_____. Fill in the blank. Question: Why is this happening to me?  Answer: Why not?   Question: How many tears do I have to cry?           Answer: Humans can cry approximately a trillion billion tears.  Question:  What is a good death? Answer: Please rephrase the question.   This one I know!  Question: What is dementia?   Answer: An eclipse: a falling into obscurity or decline.

Do you know why the sky is blue, why flamingos are pink, or why leaves change color in the Fall. Google it!

“I’m not good enough, young enough, enough enough”, that’s what the voices say.  There’s a large, dysfunctional family of voices in my head: the shame voice, the fearful voice, I’m too old voice, and this is a stupid blog topic voice! Every day, all day, these voices are the narrators and directors of my life, and sometimes I am not even aware of them.   I am feeling content one moment, and the next moment I am restless and irritable.  If I pause, I can usually identify the voice that flipped the switch from positive to negative for me.  Quite often there is a “SHOULD” involved.  I think the voices have hired “SHOULD” as their enforcer.  Whatever I am doing , I should be doing something else: I should visit my Mother, I should act my age, and on and on the shoulds come.  The dictionary says that should is a “verbal auxiliary”, and that sounds sinister to me.

The other day, my sister, Aileen, and I were talking about how amazing it would be if the voices in our heads were positive and supportive.  What if the negative voices packed their bags, took their verbal auxiliary and moved on, and the kind and loving voices moved in?.  When a friend tells me “no”  she doesn’t want to have dinner with me, instead of “Nobody likes me” or “I am boring”, I would hear “It’s o.k., I have loving friends and sometimes they say no”.  Unfortunately, the negative voices are happy with their home, and have no thoughts of relocating. Meanwhile, they make it very difficult for me to hear any positive or compassionate voices, because they make so much noise. Blah,blah ,blah.

For many years, the board of directors in my head have voted to stay with the devil I know, negative and critical self-talk, rather than risk change.  Recently, there has been some turnover on the board, and some new voices that challenge the voice that tells me I am too old to change.The teeter-totter ( not a computer game) has lots more weight on the years lived end, than on the years left to live end.  I am questioning my own mind.  I hear whispers that tell me I can try new things, do poorly at them, and still have fun.  I meditate and hear the negative voices, but I can let those voices just go thru and out.  I’ve learned that voices that use “always” or “never” are not true, and I don’t listen to  them.  I have learned and lived long enough to always question authority, especially if the authority is my own mind.

I have had swirl brain and have not been able to settle on one topic to write about. It has been like a novel that jumps back and forth between character voices, and back and forth in time, and is just too hard to follow.  All the characters are voices within me.  My memories are taking me back in time, and my worries are focused on the future. I am juggling many story lines and I want to be the hero in all of them.

There’s the “How did I get to be so old?” story.  I am bewildered by the face in the mirror and by the jumble of feelings I have about turning 63 next month.   I know that age is so much more than a tally of years.  Chronological order is a way to tell a story and to record events, but the stories I carry are more like 2 steps forward, 1 step backward. My memory can distort the truth so that even I can’t follow the story line. Madlibs fill in the blank stories make more sense!

History, her story, my story and the “Why am I here story?”.  I want to be a hero, but I know I am a very small speck of humanity.  Lately I have been thinking that the better question might be “How am I here?”. If I am loving, kind and brave, then the why question gets answered by default. So what’s the storyline?  My life is a process and the jury is waiting for the conclusion to make a determination.

In the “Roger and Me Story” the villain is Lewy Body Dementia(LBD). Roger is declining and LBD is relentless. I am not a hero in this story either. I am scared, tired, and defeated.  Grief is the story line that I follow with my tears, and I know how this story ends. Sometimes the dialogue is so painful and beautiful that every cell in my body reacts.  Roger no longer understands death and he does not understand that he is dying.  Dementia has given him this one gift.  We talk about heaven as a place where he will go and he will be able to bike and hike again.  I tell him that he will get to order all his favorite foods, and watch all his favorite movies with lots of popcorn. Yesterday I asked him if he was ready to go to heaven soon and he shook his head no. I asked him why and he said “Because I know people here.”.

Is there ever really a “lived happily ever after”?

Why do the Canadian geese cross the road?  In Fort Collins, we are so used to seeing Canadian geese that they are barely a blip on our radar; that is, until they decide to cross the street!

The geese are not the size of “What does the duck say?  Quack, quack.”.  When they stretch their necks and hold their heads up high, they are about 3 feet tall.  They waddle with large, webbed feet that carry a body weighing 25-30 pounds.  Honking and hissing, they gather on the sidewalk until one or two decide to test the water by stepping into the bike lane.  Traffic slows awaiting their decision, until sooner or later (usually later), one by one, the geese slowly cross the street and traffic backs up while we wait.  What psychopath would run down an innocent goose?

i looked around at my fellow drivers, and I saw smiles and grins as we watched the spectacle.  For a brief time, we were distracted from our worries, and were witnesses to the slow and impressive geese crossing.  Finally all the geese arrived safely on the other side of the road.  What treasures would they find?

i wondered about what treasures awaited me on the other side of the street. In spite of the dangers, uncertainties,  and troubles I faced  each time I crossed to the other side; I knew it was the journey that held the treasures.

Envy is one of the 7 Deadly Sins, but I am not talking about that “envy”.  The Envy I’m referring to is a variety of apple.  Envy is my absolute, most favorite variety of apple.   When I bite into an Envy apple it is just the perfect crisp, the perfect juicy, and the perfect sweet. The produce manager is my best friend for introducing me to Envy.

From apples to dementia…  Deep onto dementia, my husband, Roger, invites me to stay present and experience moments with him.  Lewy Body Dementia, causes wide fluctuations in awareness and responsiveness from day to day, and sometimes from hour to hour. So I ride this roller coaster with Roger.  I want to be with him, so I have to pay attention to how he is engaging with the world at the moment.  We don’t have conversations, we have experiences. Some days he will enjoy looking at books about animals, insects or an Atlas of the U.S.  On other days, he keeps his eyes closed and may want me to read to him so he can hear about these topics. On the days he is not able to leave his world and join me, I rub lotion on his hands or wipe his face with a cool washcloth so he can feel my love.

I see,hear, feel and taste more each day because Roger is teaching me to be present and experience life. I relish every bite of my Envy apple and never rush the experience. I laugh and I cry with gusto.  There were times when Roger was well that I was not really present; I wasn’t paying attention to him.  Now I beg Roger to pay attention to me.

According to my birth certificate, “Baby Girl” is 62 years old.  It’s a dark and stormy Monday afternoon and I am staring  at a blank screen.  I think of “It was a dark and stormy night….”and I smile.  This is English Comp 101, and my writing prompt is a question by Satchel Paige: How old would you be, if you didn’t know how old you are?

Now I am 18, a freshman in college, and staring at a blank sheet of paper while twirling and tapping my pen.  I am afraid that I don’t know what to write, or how to write it. I am nervous because some of my fellow students are writing furiously.  I am 5 years old and just figured out that the “Redbirds” are the slow readers.  I am a “Redbird”.  I want my Mommy.  And then I am 33 and a new Mother, and I hug and comfort my 5 year old self and my 1 year old son.

My son is 5 and playing on the playground.  He’s about to perform a daring feat and he yells, “Look at me Mom, look at me!”.  I turn to look at him and he’s in his cap and gown graduating from high school, and I am 50. I shake my head to clear my thoughts, and suddenly I am back to 62, and my screen has 221 words on it.

How old am I?  I am a year younger than my husband, but he has late stage Lewy Body Dementia and I can’t really know how “old”he is. My son is 29 and this makes me feel old!  My calendar age is 62, but I feel young or old depending on my mental or emotional status report for the moment.  As a young girl, I remember pedaling hard to get to the top of the hill, and as I went over the top of the hill I could stop pedaling and feel the speed and the wind in my hair.  I wanted to do this again and again… and I still do.

When I tell people that my husband Roger has Lewy Body Dementia, my least favorite question is “Does he still remember you?”. This seems like the morbid curiosity that compels people to drive past the horrible car accident so they can see it. They seem to need to know how bad Rogers’ dementia is, and how much I am hurting. So yes, Roger does know me. Lewy Body Dememtia (LBD) has a pattern and timing of memory and other cognitive losses that differs from Alzheimers, but is no less devastating to me or to Roger. The “scene” of dementia is horribly real.  When I am feeling sarcastic, I want to be able to say “It’s great that Roger remembers me; his dementia is a mild case and he will recover quickly and I am fine.”  Unfortunately, I would be lying.

My second least favorite question is “Lewy who?” Then I end up spelling it out, L-E-W-Y Body Dementia, and giving a short tutorial about how it’s not Alzheimers. I am passionate about increasing public awareness of Lewy Body Dementia, but sometimes I just need to know that people care about Roger and I, and are sorry this is happening to us. Maybe I will get cards printed that show how Lewy Body Dementia is spelled and include the website  for the Lewy Body Dementia Association: lbda.org and (horrors) suggest they Google it. The burden of explaining LBD can sometimes put a shadow on expressions of concern and support.

i certainly don’t want to sound whiny because  support is not always expressed perfectly. Awareness of how I feel when expressions of caring miss the target has definitely made me more careful about what and how I say “I care about you.”  Life is not fair and I don’t know why, but I can decide how I want to face this horrible challenge of  dementia.

My friend Susan worries she laughs too loud.  She doesn’t.  Her laugh is like a great big hug, a hug that says “It’s alright, laugh with me, life is funny.  After many years of living, loving, and learning, her laugh is rich and confident.  When the joke is on her, she laughs first because she knows that she is “crazy”,  life is “absurd” and it’s really all very funny.

Yesterday on our beautiful drive to Red Feather Lakes, we talked about her 45 year marriage. She is sure that her husband is surprised every day by her changing moods. She can leave for a meeting feeling and behaving fine; but return from that meeting scowling and asking “Don”t you have some place else to go?” She expects her husband to just know what to worry about and what to do, then she remembers that he can’t read her mind. That’s good. We both have a good laugh at how unrealistic our expectations are, and even in a marriage 45 years long, we forget that we can still surprise each other.

Then we remember our late night discussions , fueled by beer and cigarettes, about the meaning of life. A silly topic really as we agree that there is no ultimate goal,  and it is the living of each moment as it comes that creates a Life. We laugh because we were so sure that we would find the meaning of life, and now in our sixties we laugh at the silly question.

If you don’t at least chuckle at this quote, something is wrong with you.

When people are laughing, they are generally not killing each other. Alan Alda

And to Susan, thanks for all the healing laughter.

LAUGHTER IS THE FIREWORKS OF THE SOUL. Josh Billings