Breakthrough Experience

November 7, 2013 

 Although we haven't discussed the topic much, there's been some disagreement among my family members as to when my Mom started showing signs of her Alzheimer's . . . but I believe it all started back in 2001 sometime, 12 years ago, about half way through her 3 year mission in England, around the same time that she came  home for my brother's wedding.  As I look back upon these last 12 years, I have made the conclusion that when a person first starts feeling symptoms of possible Alzheimer's, they probably try to hide it.  They don't want people to know.  This seems understandable . . . it seems like that would be the natural thing to do.  It makes me wonder at what point did my Mom realize the reality of what was happening to her?  Had she been feeling symptoms for weeks or months, before any of us detected anything?  Whenever it was, I'm sure it probably scared her to death as she began to realize the reality!  It would scare ME to death!  

At first we all just thought and hoped that her stress and memory loss were a result of the great demands of being a mission Mom in another country and culture.  Did she believe that too, or did she know she was in the beginning stages of Alzheimer's disease?  I guess we probably will never know the answer to that.   

For about 3 years after my parents returned from their mission, we didn't talk a lot about her memory loss and our fears of what it could be.  I do remember a few conversations with my siblings about it, speculating and wondering and worrying.  I remember having crying spells, usually by myself, fearing for what the future would hold for her, and not ready to have my Mom's journey coming to an end already!  After all, my Mom was only in her late 50's, early 60's when all this was happening!!  

Around 2003 or 2004 at my parent's house . . . one of many Sunday dinners!

It wasn't until August of 2006, about 5 years after symptoms first started appearing, that I believe we had a big breakthrough experience . . . when we were finally able to come out with it and talk about it openly!  It was a relief to me and to my Mom too!  She no longer had to keep it hidden!  

This is what happened ...

August 17, 2006

I was talking to my Mom the other day and she kept saying she just wants to wake up from this horrible nightmare!  She is very aware that her memory is failing her and she’s extremely sensitive about it.  I believe we had a breakthrough experience last Sunday.  Up until last week, we’ve all been noticing my Mom’s memory getting worse, and although we have all talked about it behind her back, none of us had talked to her face to face about it, at least not deeply or openly.  


It all started last Sunday when my immediate family of eight arrived at my parent’s house for our traditional Sunday dinner together as a whole extended family.  All of the siblings that are in town get together every 2^nd and 4^th Sundays of the month at my parent’s house to eat together.  We arrived at the usual time of 5:00 and were welcomed by my Mom, Dad, Grandpa, my brother Steve who is in town from Maryland, and my sister Cammy and her husband, Joel.  


First thing I asked my Mom was how her gospel doctrine lesson went at church earlier that day.  She has been a gospel doctrine teacher for a few years now in her ward -- the same ward that I grew up in from the time I was 7 to 22.  (I moved out when I got married.)  My Mom has taught once a month for a long while now.  In the last four or so years she has experienced unusual anxiety before teaching or speaking that she has never experienced before.  Because of this anxiety, she would start a few weeks in advance of her lesson and prepare and prepare and prepare.  For this particular lesson, I know she had been preparing extremely hard because I had talked to her about it a few different times during the weeks before.  My Mom explained to me that she had ended up not teaching the lesson that morning because of something that had happened earlier.  She couldn’t tell me details right then because everyone was standing around, but I could tell she was really upset by it! 

My older sister Paige pulled me aside and proceeded to tell me what had occurred that morning.  She told me that my Mom was in on the computer that morning working on her lesson when my Dad walked in and said something about having to leave for church pretty soon.  I’m not sure of the exact details but my Mom then said something about it being Saturday and not Sunday.  You can imagine what my Dad’s feelings might have been.  ‘If my wife doesn’t even know what day it is today, there is no way that I am allowing her to teach that lesson!  I will teach the lesson.’  My Dad also has a job teaching gospel doctrine to the single, young adults in their ward and so he was prepared to teach anyway.  My Dad ended up teaching my Mom’s lesson that morning while my Mom stayed home and cried.  She knew that it was the end of a calling that she has loved and learned so much from.  I guess she didn’t so much love the teaching part, but she said that she loved the studying part because she was learning so much.  She knew she would never study that hard again.  She also cried because she felt that now the bishop would know that she had a problem and the whole ward would find out that she is losing her mind.  What she didn’t realize is that people have been noticing for probably about the last year or two that something hasn’t been quite right with her and her mind.

Although she is still very much the same to me, and is still the same great Mom that she’s always been, her short term memory is just not where it should be.  Of course we all lose our memory at times, and for months and months my family all tried to convince ourselves that it is just part of getting old.  Everyone loses their memory to some degree, but I think deep down, we all have feared the same thing – Alzheimer’s disease!  Although my Mom has still not received an official diagnosis of Alzheimer’s disease, I believe we all feel in our hearts that this is what it is.  We’ve all been through this before with my Dad’s mother, my Grandma Margaret, who lived with dementia (possibly Alzheimer's) for about 10 years, and finally died almost two years ago.  

I'm the Family Boob!! 
I got very upset as I stood talking to my sister Paige.  I have privately shed many tears on my own about my Mom this past year, but I just couldn’t hold it in any longer.  I broke down and knew that this issue needed to be talked about!  How could we go on any longer pretending that nothing was wrong?   I am very emotional, and especially when it comes to my family.  My Dad has always called me the “family boob” because I cry very easily when it comes to family and family matters, like when my parents would go on their many trips.  And like when my Dad was diagnosed with prostate cancer 14 years ago, I was devastated and remember crying for days.  Fortunately the doctors found his cancer in time and he is now fine and hopefully remains cancer free to this day. 

I’ll never forget eating Thanksgiving dinner with my extended family about 3 or 4 years ago, with all of us believing that it would be our last Thanksgiving with my Grandpa.  He also has prostate cancer and was not doing well at that time.  I spent much of that Thanksgiving day in the back room at my grandparent’s condo, and out on their balcony because I couldn’t hold back my emotions at the thought that it might be my last Thanksgiving with him.  Again, fortunately my grandpa is still alive and fighting the cancer.  I’m so grateful that he has not passed on yet!  What a good guy he is as I watched him patiently and lovingly care for his wife, my Grandma with her dementia or Alzheimer’s for 10 years.

Back to the story . . . 

I keep getting off track of my story about last Sunday . . . so I pulled my Mom aside and told her I wanted to talk to her.  Crying my eyes out, I expressed how sad I was for her that she would be losing this calling that she loved and that she was not able to teach her lesson that morning.  I can’t remember all that I said at that time, but I opened up to her and basically told her that I’m not ready to be losing my mother.  I also revealed to her that people have known about her memory loss for quite some time.  She was shocked by this news and cried with her hands in her face for a long time.  I think she has believed that no one has noticed.  Although she has been aware of the hard time she has in remembering things, she has not been aware that she has been asking the same questions over and over again within a short period of time.  “If I was aware of that, I wouldn’t be doing it!” she exclaimed to me.  Duh!!  Of course she wouldn’t!


Anyway, although I don’t think I’ve cried that hard for a long long time, I felt much relief after talking about it.  With my Dad and two sisters also in the room at the time, we concluded that there’s nothing that can be done at this time.  This is the way it is . . . this is the lot we have been given in this life, and we have no choice but to deal with it.  I decided that day that this trial is probably going to be one of the hardest things I will have to deal with in my entire life, but I’m determined to pass the test with flying colors and to help everyone else do the same.  I know it’s not going to be easy for us or for my Mom either.  I hope and wish my Mom much happiness and joy along the way.  I know there are many lessons that we are all going to learn from this.  I’m not excited for any of it, but I know I’ll be a better person for it!


It hits me at different times throughout my days of what is really happening.  Is this really happening to me and my family?  Usually things like this only happen to other families!  So I thought.

Thanksgiving trip to St. George, 2012 . . . hiking from Tuachan down through
 Snow Canyon . . our traditional turkey walk!

Introduction and 1st Journal Entry from 7 years ago!

My Mom and I in 2013

A little over 7 years ago I started keeping a journal of my experiences with my Mom and the awful disease of Alzheimer's.  I kept the journal up for about 3 or 4 years until I just got too busy with my life . . . and I feel bad about it.  I wish I would have kept it going!  I've decided to start up this blog . . . to house these many journal entries and also to have a place to continue on with my journal entries presently . . . to possibly help others going through a similar experience, to update people on my Mom's condition, to have a place to express my feelings, and to keep a record of all the many memories of my great Mom!  My Mom has often said to me, "Will you remember me when my mind was normal?"  My answer is YES!  I will remember you always and forever . . . for your great example and goodness.  And I will make sure that others will too!  

November 6, 2013 

By the way, my Mom is still alive and physically able and active . . . and mostly happy.  She has just entered a new phase of this disease where she is starting to confuse family members.  For example, my older sister, her daughter, is often confused as HER sister, and she has asked me a few times who the person is cleaning my house and cooking our meals.  That person she is referring to has been me, but she thinks that I have a gal that comes in and cooks and cleans . . . 

 

Here's my first journal entry from over 7 years ago . . .    

August 17, 2006 (Thursday)

One of my Mom’s biggest fears has always been that she will lose her mind and not be able to care for herself.  “If I ever get to the point of having to have my bottom wiped,” she has said to me many times, “just don’t feed me.  I mean it!  Just let me go.  I would much rather die in a horrible, tragic accident,” she said, “than have to lose my mind.  Can you imagine anything worse than having your mind go?”  Sadly, I believe my Mom’s worst nightmare is coming true!

I am 37 years old, the second oldest child of six children in my family.  I feel that I am much too young to be losing my mother who is also a young 62 years old!  I am married to a wonderful guy named Matt and we also have six kids.  Not only is my Mom’s biggest fear turning into her worst nightmare, but my worst nightmare is also coming true!  I have always had a fear of losing my parents.  It's probably pretty common for kids to fear something happening to their parents, but my fear probably went a little above and beyond the norm.  When I was younger and my parents would go on trips without us kids, which seemed to be quite often, I would always fall apart right before they would leave.  As much as I tried to stay strong, I just couldn't do it and always fell into a heap of worry!  I feared they would die in an airplane crash or a car accident, or something terrible like that.  The thought of losing one or both of my parents has always haunted me!  I even remember being as old as in my first year of high school, going to school with big, puffy red eyes because of my parents leaving to go on a trip earlier that morning.  I had good friends though . . my closest friends would always cover for me and tell people that I had bad allergies. :)

 

A little background about why my fear of airplanes . . . 

I remember my Mom driving me to piano lessons one day back in 1979, at 10 years old, when she told me and my older sister the confusing news that my uncle Rick, my Dad's brother, had passed away the night before in a private airplane crash coming home from Las Vegas.  I was a little young to really understand the magnitude of what had happened, but I believe it was later called the worst small, private jet crash in Utah at that time.  It is unknown as to the cause of the crash, but apparently it was a horrible crash somewhere out in the deserts of Utah.  A small group of them were on their way back home after a little get away.  I remember that next Sunday when we were eating dinner at my Grandma and Grandpa’s house, the parents of this recently deceased uncle, seeing the contents of my uncle’s pockets in a small, manilla envelope.  I’ll never forget holding one of the pennies in my hand that had been in Rick’s pocket, bent all the way in half!  That had a huge impact on me, and obviously influenced my feelings toward airplanes!  

Mom thought she was dying 20 years ago! 

I have a vivid memory of standing at my kitchen sink when I was about 15 years old (over 20 years ago), doing the dishes as my Mom was having a book club luncheon with many of her friends in our living room.  For a few weeks leading up to this time, my Mom had been having some weird symptoms.  I can’t remember exactly what they were, but I remember her complaining of feeling like she was in a fog and having little moments of dizziness.  Since she and my Dad had been on a cruise a short time before that, we just all convinced ourselves that it was all related to that and probably had something to do with her inner ear and her balance and the boat trip.  My Mom had been so worried that she even went so far as to sit down at the type writer and start writing all of us kids letters . . . as she thought she was dying.  I’ll never forget trying to hold back the tears as I stood there doing those dishes . . . believing that my Mom could possibly be dying.  She ended up receiving a blessing from my Dad, and if my memory is correct, she was blessed that she would be able to see all of her children grow up to adulthood.  At the time, it was somewhat of a relief to me to hear that, as my youngest brother Steve, was I believe, only in preschool at the time . . . and we had many more years to go!  In the back of my mind I always dreaded the day that my brother Steve became an adult old enough to be out on his own.  I have feared since that day that someday she might start showing weird symptoms again!  I believe she has probably had the exact same fears!  Now I know my fears were "not for nothin'"!  

First Signs that something might be wrong . . . 
The first sign of anything being different was when my Mom came home from her mission in England to attend my brother’s wedding in December, 2001, about half way through their mission!  My parents were serving as mission president in the London South Mission at this time, and my Mom was given permission to come home for her son (my bro's) wedding!  It was at Christmas time and our whole family (minus my Dad who had to stay in London) was gathered at my sister's house in Pleasant Grove, Utah.  I remember my Mom being quiet and seemingly distant, and I remember having that deep, dark feeling that this was the beginning of something . . . something bad!  Part of me didn't want to believe it and kept holding on to the hope that maybe her stress as a mission Mom was causing this somewhat different and unusual behavior.  I think others noticed too, but there wasn't much said amongst all of us kids at that time.