Just the beginning ...

First and Foremost, two people that I've never even met are the inspiration behind this blog.  (Veronica, who lost her husband tragically in the Fall of 2010, with 2 children and a third on the way and her newlywed husband, Steve, who just began a blog about remarrying, loving and supporting a grieving wife and/or dealing with your own emotions of loss [forgive my poor summary...here are links to their blogs http://loveintheaftermath.blogspot.com/2012/09/a-unique-journey.html and http://veronking2003.blogspot.com/2012/08/grief-will-always-suck.html]).  These are 2 people getting through TOUGH life trials, both being so transparent and brutally honest about their journey.  When I heard her story, I had 2 children of my own and couldn't help but reflect and sympathize.  Trials tend to put life into perspective...this is not the only reason I am starting this blog.  I pray that my story can help others (both now & in the future) and perhaps opening up will help me to get through this trial too.  It will also serve as a memory, not only for myself, but for my 2 beautiful children. 

The sweet, smiling lady above is my mother.  This picture was taken in Winter 2011 (around February or March), only about 4-5 months after a rough, sketchy diagnosis of pre-dementia.  I want to share that experience with you today, to prepare you and hopefully help your family avoid this same experience!  The doctor referred us to someone who did some testing (to see where she ranked for her age) who then referred us to a psychologist.  He was TERRIBLE, with the worst bedside manor I've ever witnessed!!!!!  After gathering data from my dad and I, he called my mom into his office (keep in mind she didn't have a full understanding, as she felt normal).  When he couldn't convince her that something was wrong, he stormed out to bring me into her room.  Once seated, he said, "Your mother doesn't seem to think she has any memory issues at all.  Would you care to tell your mother what you shared with me?"  As I looked at my tearful, horrified and dumbfounded mother, I took a moment to gather my thoughts and looked at the doctor, hemming and hawing A LOT.  I guess you'd have to have known my mom, but she has always been so head strong (stubborn and independent) and still had most of her facilties about her, she dismissed the one discussion we attempted about disease and therefore, we decided early on not to bring it up.  The doctor then said, "So are you saying your mother is totally normal and has no reason to be here today?" ... I was MORTIFIED!!!!!!  I hadn't even come close to wrapping my head around any of this.  I wanted to dismiss the whole thing and get on with life.  I wanted my girls to have their grandmother (in tact and her fiesty self) longer than I had my grandparents (all biological grandparents were dead by my 8th grade year).  And so, after waiting for results and torturously having to return to this guy, we were told she cannot have meds (because she is already moody) and his diagnosis was pre-dementia.  That was it!  No direction, no nothing...and worst of all, we were left to do the research to find out what's next.

I suppose the first word of advise I can offer anyone questioning whether a loved one has dementia/alzheimer's is to research out the right doctor (and preferably meet him or her before you take your loved one to them).  Usually, they interview you separately first from your loved one.  Talk with them and share your expectations and ask any questions - now is the time.  It's all new, and it's so hard to wrap your brain around it all, but it's just so important!  Spend time online reading about the disease so you can ask specifics.  Mostly, may God bless you as you travel down this very trying road.  You'll need to learn how to be forgiving, patient, understanding, humble and daring to survive.  Also, find support, it most likely will not be those closest to you.  Most of your close family will try to wrap their brains around this too and close friends (unless they've been through it themselves) won't know WHAT to say!  Some may be able to listen, but you really need someone who understands the dynamics this disease brings.

So, why the word play?  Here's how it happened:  I was looking for a name for this blog, which led me to a glossary of terms for Alzheimer patients.  As I scrolled down, I saw "Atrophy:  Shrinking in size; often used to describe the loss of brain tissue seen in Alzheimer’s disease during autopsy or on brain imaging."  Immediately, my brain separated the word into A Trophy.  I chuckled to myself and thought of a few other words I'd replace trophy with, but overall, atrophy is a trophy - it's hitting me as I  type that instead of a souvenir of an achievement, it becomes memories of achievements.  There are times (like 5 minutes ago) where my mom will come to me crying to tell me just how much I mean to her, and that I do so much and she loves me.  I cherish these moments, like trophies, and hold on to them.  They are blessings from God, because that is my mom, the woman that I love and often miss.  I cannot ask my mother questions about rearing my girls, about family history, about a recipe or two that isn't written down...it hurts, but I know we have a long way to go (and many more trials to get through).  For me, I am learning to rest in my Lord and Savior Jesus Christ for comfort and strength and advise on rearing my girls. 

I will try to remember to post blogs from time to time (please be patient with me as I am new to blogging and new to sharing my inner thoughts [which may have some of you questioning me]).  If you are a christian, I urge you to please pray for those of us facing this battle.  It isn't easy, it is very trying/taxing and takes every ounce of energy every single day.  Pray for us, for comforting moments, strength to make it through and God's peace, that passes all understanding (Philippians 4:7 and John 14:27).  Thank you!