Living in the World of Alzheimer's...

    * My Journal *  This is a glimpse of my mother's world.  Mom is in the blue on the left.  She is in her special wheelchair, all strapped in with her big leg braces.  Most...well...OK...all of the time... when I come into this confined, locked up and closed off world, it feels simply pathetic. It breaks my heart.  Mom has outlived most in this unit.  I have seen many many Alzheimer's and dementia patients come and go.  Some of them have "lasted" in here for quite a while.  Some people...some...deteriorate quickly and don't "last" long at all.  Honestly, I would say they are the lucky ones.  Noises, curdling screams, and odd to piercing "sound effects" made by the residents can be as disturbing as seeing the agony over a roomful of too many worn, sick, and sometimes distorted, faces.  Don't get me wrong.  I don't see everything as bad.  There can be many laughs here.  The working caretakers in this field of "Insanity" HAVE to carry on a sense of humor...(for survival's sake...in my opinion).  I myself laugh with them.  We all need to "exercise" a sense of humor in many aspects of life.  I think everyone would agree.  

    

    When I came to see Mom this particular day, she was looking quite stern and not so good as other times.  I rubbed her shoulders and neck, held her hand, kissed her head. I tried to talk to her.  She only stared at me....she has been doing that lately.  She has not been talking her usual "gibberish".  Even though she is slowly deteriorating, she seems to notice me more than before...just like on this day.  As she stared at me with her stern, but expressionless face, she appeared to be looking right into my eyes....almost like she recognized me.  (She can really surprise me sometimes.)  As I was looking right back into her eyes...patiently....for several "moments", she slowly formed her mouth into an O shape.  I brought my cheek to her lips. She touched my cheek.  I pulled away and looked at her.  She shaped her mouth into an O again.  I brought my cheek to her....she was kissing me... we did this over and over...sometimes she actually did a light "smack" on my face. This happens and I don't realize there are still feelings inside her skeletal frame with a soul that's seemingly dissipated.  Then I wonder if she is trying to tell me something?  Is she trying to finally let go.  Is she trying to tell me goodbye?  Is that terrible to say?...I can't help it....it just sort of feels that way when I see her eyes stare at me as of late.

     

    Leaving the nursing home, I couldn't stop thinking about my experience with my mother.

I don't know....maybe I think about things too much. Maybe I'm just completely "off base".  On the way to my house, I did some crying....and more thinking.  As distressing as it seems when I walk into the pitiful world my mother lives in....I realize I am lucky and so is she.  She has me and I have her. I have missed her terribly as the mom I once had.  Oh...do I EVER miss her.  She was a wonderful mother and wonderful friend. ... But, in a way..... I do still have her....she gave me kisses...lots of them....another moment to cherish....and that's another good thing.

The finest of the finest

    My Journal * As I have been going through boxes of photos in preparation for Amy's high school graduation. I came across this photo that made me stop everything I was doing. Oh my goodness!...there is my mom on the right....Marylyn Scheuerman in the middle...and Evelyn Larsen on the left...all dear dear friends. I have known Marylyn and Evelyn my whole life. They knew me as a baby. Growing up I watched these ladies, their spouses, and several other dear couples spend time together, party together, and be there for each other when needed. They were a tight group.  They would take turns throwing dinner parties at their homes. I remember how fun it was for me when we had the parties at our house . Mom loved entertaining. My favorite was enjoying all the appetizers. My dad relished and had a knack for playing "bartender". They would stretch cocktail hour into several hours of fun and laughter.  Dinner would be enjoyed late into the evening. Then dessert...sometimes devoured not until the midnight hour. It was joyous. 

    These ladies have been lifetime friends. Evelyn and Marylyn always treated me as if I was their daughter.  Unfortunately we have lost Marylyn, but I'm sure she is happy to be united and in peace with her two beloved sons she lost...so painfully... in her life here on this earth.  Evelyn and husband, Dale, are alive but struggling in health. Mom...well...Mom has seen better days.

    This picture of the three makes my heart feel warm. It brings me sweet and joyful memories. I cherish those memories.  I adore not just my mom, but also Marylyn and Evelyn ....so so deeply dear.

    I love these three ladies...wonderful friends, wonderful wives, and wonderful mothers. 

Happy Mother's Day to all.  It's a good thing.

IS THIS ME?

  * My Journal * I don't believe I have "blogged" on or about my birthday but this one I will.  I started my birthday today enjoying breakfast out with Roger, and the kids....a rare moment these days.  It was nice.  We all ate heartily...omelets, biscuits, chocolate chip pancakes....yum.  I actually wasn't thinking much about being a year older....that is until we were finishing devouring our delicious breakfast and sipping on coffee.  As we relaxed for a bit, I turned myself slightly and looked to my right.  Suddenly I did a double take.  What did I see?  My brain was feeling a bit weird as it does at times.  There sitting near me was an older "scraggly" but "a little bit cute" lady just staring down at the floor.  She had some wild mussed up hair.  She looked like she was trying to "style" but it wasn't quite working.  THEN it HIT me!  "OMG", I thought, "that is ME in 20 years."  I turned away and looked again, thinking and hoping I would not feel that odd feeling that I was looking into my future.  "OH Geez....YES....it is me."  I couldn't deny.  I then turned back to the table.  I looked at my family and felt the need to tell them about my "into the future" vision and "sighting".  When I confessed to this self truth....I was thinking...."Oh, I'm sure I'm just exaggerating things in my head, and I'm sure my family won't see what I'm seeing!"   As soon as Amy looked at the old lady, she said, "Yes, Mom...that is SO going to be you."  Well...I then knew I could either laugh or cry! :)
     I learned how I have learned before...it's so much better to laugh!  And we all did.  Yep, I'm still laughing...well...sort of...heh!   Truth is, it's been a good birthday today... and that is a really good thing.

Mom and Me

    * My Journal * When my parents were growing up both of them lost their fathers at a very young and tender age.  Mom lost her mother when she was only about 19 or 20 years old.  Her mother was bedridden, not knowing who she was for years before she passed.  As a “self absorbed” daughter I never thought much of it.  I had my mom and dad…Parents don’t need their parents…right?  Ha!…What do I know!!!???  Not until Dad was over 80 years old, during one of our dear conversations, my father expressed sadness to me over not having his father around as a small child and beyond.

    When I heard this I felt bad. I felt really bad that it didn’t “cross my mind” or concern me that my own father did not have a father “figure” for most or pretty much all of his life.  I can’t imagine that for myself.

So, I guess I should obviously feel blessed for the time I have had with my own mother and father. And I do.  But  I am also selfish…still want them around…still want to be able to tell them what’s going on in my life, and what’s not going on in my life...I want them STILL to  help me parent my own kids nearly grown now.....no matter how old I am or how old I get.

    OK.....but....Mom is STILL physically here.  I want to tell her stuff.  I want to go on errands with her.  I want to bake Dad’s favorite pumpkin pie with her.  And I want Dad here to enjoy the finished homeade product.  It can only be a memory…indeed...a good memory that no one can take away from me.

    The photo I show is a recent picture of Mom and me.  Mostly I just stare at her. I talk to her as well. I tell her I love her. Sometimes she seems to notice but not so much anymore. She still “jibber jabbers” when she has the energy.  On this day as I held her hand, she “suckled” my finger.  I believe she was kissing me.  I will cherish that moment.  It’s all I have with her.  It needs to be OK.  So, I guess… I think….that ought to be put on the list as a blessed good thing.  And it truly is.

    Mom turns 85 on Monday.  Happy Birthday my dear mother.  Love you.

* My Journal * Wow...it's October of 2013. I am now a two year breast cancer survivor. I am still under the watchful eye of my surgeon, and as long as I continue to take the cancer drug, tamoxifen, I am in the care of my oncologist. This is only for preventative measures to try and avoid a cancer recurrence.  (I don't know how much longer I will be taking the drug...possibly up to five years.) My medical appointment schedule keeps getting more spread out as I keep receiving "all-star" check-ups!  I would say I am in a "nice place". 

Because of my position, I have gained a high respect for Breast Cancer Awareness month--Pink October it is!  This makes for an attention getting notice for everyone to plan your screenings and check-ups. I like to extend this month of awareness for not only a reminder of breast cancer screenings, but also for preventative and testing procedures for other cancers. I have said this before and I will say it again... and again....I am alive and healthy because of tending to my annual screenings. 

As well as continuing the fight against breast cancer, October is also a wonderful month to reflect on the concept of giving and supporting the needs of others. With that said, let’s continue to come together... make a donation... run in a charity race....maybe volunteer at an event .  Let's make a difference....Believe in the “Power of Pink”.   I do BELIEVE! ... 
And that’s a good thing.

A Dance Recital's Beautiful Moment...(and it's not about "the" dance.)

                                                                                                          (Photo by Kim Pluenneke)  
      

   * My Journal * This past weekend was spent tending to Amy as she performed in three dance recitals over the course of two days.  I definitely had a most precious "feel good" moment... a moment, I will indeed cherish forever.   What captured my heart?  No…it was not about a breath taking lyrical dance, or an inspirational ballet with exquisite precision.   It also wasn't about watching the priceless "little ones" performing in their very first recital...(although I must say nothing gets cuter). It wasn't even about the joy of witnessing Amy and her peers flow across the stage with maturity and grace.

    What I am talking about is simply and perfectly captured in this snapshot.  A slice of life beyond precious. It's true.  A picture really is worth a thousand words.  To see the "older" girls taking time, connecting, and sharing with the "little" girls.  Does it get any better than this?  I don't think it does.  (If only the "rest of the world" could "have" what this picture reveals.)  I believe this to be a most endearing moment....to treasure....always and forever.  And that is truly a good thing.

MY GUILTY VERDICT... (please forgive?)

    * My Journal *  For some time, I have been at odds with myself when I make visits to see my mother in the Alzheimer's Unit of the nursing home.  Wouldn't you think to see my mother having a "good day", (relatively speaking), that I would be pleased for that "good day"?  You would think....but I am not.  And wouldn't you also think I would be happy when one of the caretakers tells me of Mom's success with the latest  "feeding".  As the aide gives me this "good news", I find myself falling into an internal slump with disappointment.  Whenever one of Mom's "helpers" approaches me in excitement with a  "good" report, I seem to have to pretend that so called "good news" makes me "glad".  Nope.  As I smile at the aide with the "good news", inside I am not feeling glad.  I am not feeling happy. A repeated feeling of discouragement that I can't control hits me. ...and hits me again and again.
    Am I crazy....has the devil latched my heart!!?  Maybe.  Don't get me wrong.  I haven't always felt this way.  It seems to be another phase of this Alzheimer's journey.  I just quietly think, every day Mom has a "good day",  just prolongs the agony of living life in such a pathetic state that I see her live, day in and day out... turning into years.... a life....dare I say....not worth living.  Yikes... I did say that!  Let me pause...............this feels wrong... am I just being selfish, insensitive, cold?.... but again I can't seem to reverse my thoughts.
    Only recently, my visits with Mom have been practically intolerable for myself.  Mom, the victim of this disease, has gone through her own unpredictable stages of chaos. Many of which parallel my own emotions as a winding roller coaster turning upside down at times.
    I have been a regular visitor to the John Knox Village Alzheimer's unit for over five years now.  I have gotten to know many victims of this disease where my mother is in this place called "home". This disease can bring on numerous annoying habits and irksome behaviors with these unfortunate human beings. Mom has auditioned habits that are so disgusting, I can't even write about them.  The latest that I CAN write about seems to be the hardest for me to bare but mentioning may sound only silly unless you were to witness this for yourself.  The first time I became aware of this behavior, I did not know what "it" was. I kept hearing a very loud grinding screeching noise almost sounding like styrofoam twisting and breaking, worse than the sound of finger nails scratching down a chalkboard.  The noise is heard all through the unit. Then the discovery.....this mysterious and disturbing turbulence is my mother grinding her teeth.  OK....if you can handle ten sets of fingernails scratching down a chalkboard, and NOT stopping.... then....no big deal.  As for myself, I can't even fathom toleration of this.  I just want to get out of there.  I sense a feeling of suffocation  and I also feel like I'm losing my mind with intolerance.  Then I think, if only it could be "over".  There I go again...thinking bad and unrelenting thoughts.  But is it bad?  Is it wrong to wish my mother to move on to a better place?  That seems justifiable....tell me I'm right?  Even so, I do stand before the judge and declare myself "Guilty".  I am guilty that I keep wishing for the end to come.  Not that I am looking forward to it....of course not.  I am guilty for finding myself growing with less and less inspiration to visit Mom in her state... and now that she has this new "tick" about her, I seem to simply dread it.   I am guilty for not being grateful for Mom having a "good day" or eating a "good meal".  Someday it will finally be over, and then crazy me will be yearning to hear her grinding teeth one more time.
    I recently saw Robin Roberts being interviewed.  She theorized, "No matter how old you are when you are going through a hard time, you still want your "mommy"."She is right.  I truly believe I lost my mom many years ago to the horrible disease that has overtaken her life.  There have been so many moments I have wanted my "mommy".  But as I visit her, only a shell of her sole exists.  Robin Roberts lost her Mom when she was to start her bone marrow treatments.  What a painful time in life.
    I can not overturn my feelings and my guilty verdict, but I do know I need to dwell and focus on the mother my mom will always be to me.  What a blessing my mother has been.  My mother, JoAnn Moll Bryan has been an amazing human being.  One that is "oh" so kindhearted, loving, and generous.  Her life has been simple and pure.  How nice.  She has always been loyal to helping others and being there when in need.  Her life has never been about her... never never selfish, only generous.  She has been a devoted mother, committed wife, and faithful friend to many.  I do indeed miss my "mommy".  However, her sweet demeanor still comes through now and then at the nursing home. That is good.  She is very loved there. That is also good.
Dear Mom....I Love You....and God Bless You!!!
And guilty or not, that is simply a good thing.