Loving and Living Alzheimer’s

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...

So many changes.  He seems to be spiraling downward at an alarming pace.   I’m fascinated and in dis-belief, in unison.  My mind can’t accept that this is possible.  How can a person be completely different in the span of a week?  Yes, I ask myself this question frequently but my awe is unending. He can no longer do anything by himself.  God Bless him, as he tries to be helpful.  He relies wholly and completely on me. I am filled with sorrow for the man he used to be.  For the man he is becoming.  The man he feared becoming. He does not know my name or my association to him.  A deeper level of lost, getting worse each day.  I have become the nice lady he belongs with. He is largely non verbal.  He spends most of the day silent.  When he does try to communicate, it is in vain.  Nothing he says makes sense.  Thankfully, he no longer becomes angry when he struggles. He has swapped that anger for his own sorrow. He n...

It finally happened  As of late , he can’t tell me my name, when asked.   If I ask him if my name is Melissa, he tells me “she’s not here”. When I tell him I’m Melissa, he responds with “cool”. Weirdly, if someone else refers to me by name, he knows who they are speaking of. I’ve begun asking him how we are related.  He just shrugs and smiles.   Am I your Mother? “No, I don’t have one”. (True, Mom passed from this horrible disease in 2001) Am I your Wife?  “No, she’s not here”. We are married.  “That’s awesome!” He has even gone so far as to throw his arm around my shoulder and tell me what a good sister I am.  (He has no sisters) And again, if someone else asks about his Wife, he knows it’s me. This disease fascinates me.. when it’s not destroying everything we had, little by little. Over the weekend, Randy stayed with his Dad and Stepmom. When I arrived to pick him up, he was napping.  So as not to startle him, I softly sat beside him and rubbed...

 So many changes in our little piece of the world. I am working from home now.  Our youngest moved home a few months ago and Randy’s cousin departed a little over 2 weeks ago. Being home 24-7 is surprisingly enjoyable and the Mr is so much happier.  Almost zero episodes of angry hostility.  No attempts at escape.  He’s polite and asks permission to do anything. In spite of the peace and calm, I have found I am struggling to blog.  I’ve attempted on several occasions and the words don’t come.  My thoughts are jumbled.  What is my message?  What do I want to share?  Who am I helping?  Am I helping? Things are better than they have been in quite some time.  But, they are not.  Therein lies the dilemma.  I suspect as caregivers, this is a common crossroad.   We have peace.  He is happy.  He is passive and easy to please.  He’s obedient.  He’s a child.  My child. He can’t put his feet into his...