Loving and Living Alzheimer’s

Going on our 3rd week of peaceful existence.  The change has been wonderful.  Randy has been happy, playful and mellow.  Why am I subconsciously waiting for the storm? I should be grateful… Tomorrow is Thanksgiving and we are hosting 20.  It also happens to be Randy’s birthday.  I am thrilled to be able to surround him with family to celebrate “55”.  He is blessed to get another birthday.  I wonder how many more he will see. I need to be grateful… We have kept his calendar pretty full, as he is happiest when he is busy.  He struggles to remember when he has plans but never forgets that he indeed has them.  Giving him things to look forward to motivates him.  However, it also prompts the never ending repetitious loop of the same questions. It’s hard to be grateful… Daily, his communication skills become more and more cryptic.  One more time, he asks to “ go to the place, that we went that time, where we can get the thing from that gu...

The last week and a half has been surprisingly peaceful and pleasant.  We had that prior weekend of terrible and then settled into this new place.   Anxious moments have certainly happened, as they are the normal way of things but, Randy has been navigating quite well.   Shirts have been put on inside out and sometimes backwards, socks on inside out or heel up.  Items have been misplaced or lost.  The TV remote isn’t quite as easy to use as he remembered.  All of these triggers are continuing to happen but, he remains calm a pleasant.  He has even gone as far as to willingly ask for help on the occasion he recognizes his struggle. We were blessed to have been invited to speak at an Alzheimer’s educational event this week.  I was nervous as I contemplated what my contribution would sound like.  Randy was calm and confident that it would all go well.   True to his prediction, the evening went well.  He was all smiles and giggles while...

It has been 3 1/2 years since Randy’s last day of work.  3 years and 3 months since his misdiagnosis .  3 years and 1 month since he has driven a vehicle.  2 years and 10 months since being given the correct diagnosis that has altered our lives, forever. While we wait for our referral for a new Neurologist, it is a daily crap shoot in regards to what will be his next trigger.  His next meltdown, fit or verbally abusive rant.  He is suffering.  We are suffering.  The only option is to tread lightly while we wait however, we have become quite comfortable with letting him “pout it out”. His confusion has increased exponentially and his inability to express his wants and needs verbally, is the cause of much angst.  He is diminishing before my eyes.  He has frequent headaches and head pressure.  His shrinking brain is erasing who he is.  Who he was.  What we had.   He is now beginning to exhibit a form of confusion that could b...

 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...