Loving and Living Alzheimer’s

Friday was his 56th birthday.  It held little significance for him overall, however he was jovial.  I even got a dance out of him when I sang him his birthday song. The morning went smoothly.  He watched TV while I prepared a Turkey dinner for a us and couple of friends.  I really felt it was going to be peaceful day. Until it wasn't... While I will spare you the gory details, I was not prepared for the state in which I had found him. He entered the kitchen distressed and trying to alert us he had made a mess.  It takes took only seconds to determine what had happened.  He was so confused but there was a part of him that understood he needed assistance. Got him showered, floors cleaned and settled back into bed. And then I had an epic meltdown. When he was diagnosed, there were two things he was afraid of.  One was being bedridden, the other...this. Why today?  This was supposed to be his day.  My heart broke a little bit more.  My soul ...

I work from home.  Each morning, while I am occupied at my desk, Randy will often get up just to open and close the bedroom door.  Over and over, for long periods of time. Once that activity has run its course, he will quietly walk down the hallway, stopping just short of me being able to see him.  Almost as if he is hiding.  There he will stand, silently.  Until I acknowledge him or until he decides to return to the bedroom. Upon his return to the bedroom, he will either go back to sleep or sit on the edge of the bed, staring at the wall. This cycle repeats for hours. And it stresses me out! I worry that he's distressed or confused or scared or any other troublesome state that my mind can conjure.  When I can take no more, I brace myself and go to him.  Only to discover, he's fine.  Bonus is, he's happy to see me. My brain goes into Mommy mode and the nurture instinct tells me he needs to be coddled and fixed.  He must be struggling. Frettin...

"Everything happens for a reason" "What doesn't kill you makes you stronger" "God only gives us what we can handle" Why..... I have never questioned my higher power more, in my life!  I have experienced tremendous loss but, this!  Dear God!   I've lived through suicide, cancer (multiple times) and mental illness.  My brothers are gone.  My father and my uncle (beloved father figure) are both gone.  No grandparents.   They were taken.  I grieve from time to time but the pain lessens.  I have made peace with these losses. I suppose, one day after he is physically gone, I will find my peace with Randy's death. However, watching someone leave you slowly, day by day, over the span of years, is far more excruciating than sudden loss, in my opinion. Grief comes and goes, like the ebb of the ocean.  While it subsides for moments, it returns like the crashing waves.  Some days, I can dive a little deeper and come out the other side, unscathe...

I blog about all he is suffering.  All we are enduring at the hands of this awful disease.  What we have lost and what he will never get to do.  I blog because I want the journey to be documented.  To help others on this path know they are not alone.  To answer questions for those who genuinely want to know how Randy is doing but are reluctant to ask, out of respect. What I haven't done is document who he was.  His story.  What he was before he became a patient. He was kind.  He was sweet.  He was silly and passionate and brave. He was popular in high school, with a smile that could kill and beautiful blonde tresses.  Played football, swam a little and loved life. There was a period where he was a victim of his own poor decisions and self pity... until he wasn't.  At his lowest point, he decided to save himself.   He joined the program, followed the steps and found God.  He rebuilt relationships and reclaimed his life. ...

So many new changes in such a short period.  (Lord, I think I’ve written that statement more times than I can count) He is fearful quite often now.  Afraid of being alone.  Afraid of returning home after an outing.  Fearful of “trouble” that he can’t explain.   Seeing him frightened is soul crushing.   Fortunately, calming him is still fairly simple, with soothing tones, hand holding and reassurance that he is safe. The routine exchange being my confirmation that I will always take care of him and never leave him.  His response of relief.  Does his brain genuinely believe that he will be left all alone?   Just the thought of him carrying the weight of believing that this is a possibility, sucks the air out of my chest. Along with this, he is recognizing less and less, how his loved ones fit in his world.  He knows we are his people but just how that relates, escapes him. He sees his Dad twice weekly.  This last visit, he asked Pop (...

While my blogs seem to be getting farther and farther apart, my thoughts about this one have been in the forefront of my mind for sometime now. I write about our journey in order to purge my innermost thoughts.  It’s a form of therapy for me.  I also hope to provide knowledge to those traveling this road.  Maybe even provide some comfort to know they are not alone or going crazy, as the role of caregiver makes you doubt your own sanity. I also write to document Randy’s journey.  He lived, he loved and he was robbed of so much however, he was very verbal about wanting his illness to somehow aid in ending this horrible disease.  Knowledge is power.   As of late, the responses I get from my/our story, are those of  great distress and sadness.  Tears have fallen and hearts have broken.  Family, friends and strangers alike, have been touched by these written words.   It is oddly comforting to know my words touch others so deeply.  A sort...

 I have been dreading this stage.  Seeing this gentle giant with fear in his eyes….so very, very sad. He is on the cusp of becoming non-verbal and his mind is in a constant state of confusion.  He remembers his mother is gone yet, has begun asking to go to Grandpa’s.  Do I tell him Grandpa has passed or divert and spare him the loss? I am still the “nice lady” (at least he still like me) when he forgets who I am.   His Dad fluctuates between Dad and his buddy Terry.  My mother however, is always Laurie (correct).  The things his mind can and cannot remember is fascinating, in a weird way. Regardless of who we happen to be to him in the moment, he clings to us.  He isn’t quite sure but some small part of him still understands he belongs with us. He doesn’t know this is home anymore.  He tells me he is leaving now or that he is ready to go now, several times per day.  Each time, as I explain that he is home, that this is the home he worked...