Loving and Living Alzheimer’s

 This disease is cruel. Cruel like I have never experienced. Randy is my second husband.  My first was a classic narcissist who deceived me at every turn and skillfully made me believe it was my fault.  He lied and he cheated and for a time, he broke me.  He was cruel to me, I now know, because he was a coward. Alzheimer’s is a worse kind of cruel. Randy came into our lives 16 1/2 years ago.  This kind, gently, funny man.  He gave my children the chance to see how a man should love their mother.  He gave me the chance to see my children get unconditional love from a father. He gave our granddaughters a Papa. The cruelty of Alzheimer’s, while slowly erasing, is robbing us of his gifts. His demeanor has been changing and altered this past week.  The weekend was truly one of the worst….ever. Fits every single time he doesn’t get what he wants or his way.  Rage is his emotion and it’s frightening.  My mind knows it’s the disease.  My he...

 I have often commented about how painfully aware Randy is about his illness, quietly wishing he were oblivious to that knowledge.  Those quiet wishes sometimes have an odd way of coming true.   Blessing?  Curse?  Alzheimer’s always seems to be a twisted blend of both. Almost daily, he now asks me what he has.  When will it go away, how did he get it, why would his Mom pass something so terrible to him, what does the diagnosis mean, etc… Every time he asks, l search my mind for better answers.  As if a new response will stick in his dying brain.  The answers don’t have to be correct, they simply have to calm his confusion. His newfound ignorance to his circumstances do not bring me comfort, as I hoped it would.  I thought that relieving his anguished, painful knowledge of the truth would be one of the blessings I was searching for.  I was wrong. Don’t get me wrong, less emotional pain for him is a wonderful thing.  I want that relie...

 Wish I had a structured theme to this post.  No pre-determined ebb and flow of thoughts for this one.  Simply saddened and shocked by the changes in such a short period. Our doctors were very clear that Early Onset Alzheimer’s moved faster than Advanced Age Alzheimer's.  Typical prognosis is 6-9 years.  We are 3 years in.  While I feel his odds are better due to his amazing health, the progression is happening.  At an alarming rate. This last week and a half has been hard.  A roller coaster of anxiety and anger for Randy.  Add tears and frustration to the list for Nette and I. He has stormed out 3 times due to not getting his way or feeling stir crazy.  He can’t always wrap his arms around what is happening but he is very aware that he is a grown man with no control of his own life.   He has to be told to shower, helped with water temperature and assisted in choosing his wardrobe.  He struggles to put items of clothing on in t...

 Doubt….about my ability to be the caregiver he deserves is the emotion today. We had a pleasant mini vacay in Las Vegas over the weekend.  He enjoyed the trip, in spite of getting separated from our group twice.  Randy thanked me for the trip upon our return.  We were both exhausted. The flight home?  A mere hour and  twenty minutes.  He asked several times, “ how much longer”, as if we’d flown coast to coast. Doubt….about being able to travel with him much longer. He stayed 2 nights with his Dad this week, per his normal routine.  Lately, I use those nights to escape home, making every effort and taking every opportunity to be anywhere but captive at home.  Out where I can be spontaneous and not be responsible for another human being.  Drinks, dinner, adult conversation with friends.  Trying to find my normalcy in a world outside home. Doubt… about our home ever feeling like home again. His stay with Dad came to an abrupt, hostile...

 Most days, he’s still pretty happy.  He is playful and quite the prankster.  He is easy to giggle and tries to flirt at every opportunity.  Similar to the little boy in class, pulling your ponytail for attention.   He is becoming extremely difficult to converse with, as his sentences are the textbook, word-salad.  He speaks in such a manner that the question is indecipherable.  Frustration is raging as we navigate to my finally understanding.  But, with my clarity comes his victory because he knows his question was valid and the confusion was mine.  He is happy once more. Until his mind wonders “when”? When do I get my drivers license back? **Never When will I be normal again? **Never When will I get to work again? **Never When will I get to stop taking these meds? **Never  When will they give me my brain back? ………! The “when’s” create angst and despair for him.  Almost attached to his subconscious knowledge of the silent “never’s"...

 We had a good week.  Lots of smiles, lots of naps and lots of Starbucks. Today he is tired and very mellow. Yesterday we laid to rest a dear friend and amazing man!  He did well, as it was a long day.  He was sad for the loss he acknowledged but not emotional, for his ability to empathize comes and goes.  Honestly, he was a bit more focused on my legs and made it known several times!  Not exactly appropriate for the occasion but what are you going to do?   Today he is a little lost. Yesterday, at lunch he held up his butter knife and asked me what it was.  My heart sank.  For a moment I was speechless but simply told him it was a knife but he didn’t need it.  Handed him his fork and showed him what to do with it once I recognized there was still confusion on his face.  No issues after that. Today he couldn’t recall the names of our children and grandchildren when asked.   He knows these things but he doesn’t.  His mind co...

 I honestly believe one of the cruelest parts of this horrible disease is change.   Change robs what once was and what could have been. I was once a wife and partner.  I am slowly evolving into a caregiver and surrogate mother. Change has taken 16 years of unending love for one man and morphed that love into an entirely different type.  Still unending but different.  Still to the end but.. so vastly different. Change has taken plans of retirement and growing old and exchanged them for here and now because my retirement and aging will not include him. Change has brought loneliness into a world where my partner still resides.  My brain battles my heart over what feels like involuntary betrayal vs survival. However, Change has shown mercy and spared him the knowledge of our metamorphosis.  He is happy and for him, all remains the same.   I am his safe place.  I am his person.  Whether he calls me Baby Doll, Mom or even sometimes, Dad, I am ...