Loving and Living Alzheimer’s

**lengthy blog My mother aptly chose the topic and title for this one.  Disclaimer..she is also responsible for my ability to find humor in the oddest of places. For some unknown reason, Randy fights Mom when she tries to administer his medication.  Whether it be verbal refusal or locking his jaw and pursing his lips, he usually renders her defeated. He has recently become unable to swallow his pills, requiring them to be crushed and mixed into liquids.  Even in this form, he makes her work for success.   Last night, as I was out for a bit, Mom was on med duty.  After 4 attempts to ensure the entire liquid dosage was taken, she gave up, figuring he'd ingested "just enough".  He was manageable and agreeable. Shortly thereafter, and much to Randy's delight, a pizza delivery arrived.  Our roomie accepted the delivery after confirming with the delivery driver, that I had ordered it.   I had not.  He had not.  Texts and phone calls later, it ...

Yesterday he forgot how to eat.   I think of myself as well versed in regards to what is coming in the next 18 months.  I've read the textbook behaviors and struggles that are part of the normal decline. Yet, when they happen, the shock and grief are overwhelming.  Maybe this is true in all of life's journeys when the ending is already known and I've just never paid attention. Per normal Monday routine, Randy spends the afternoon with Julio (best knickname!).  Lunch and as much activity as he can tolerate, which is minimal. It was a good afternoon and I am told he ate well, with a bit of assistance.  One outing per week is generally it for him, as it wears him out.  He was happy and sound asleep by 7pm. He woke around 7am yesterday morning, took his meds and drank a couple sips of coffee.  Back to sleep almost immediately.  He woke again at 10:30am and everything was off.   Unable to speak words, just grunts in reply to my questions.  Gl...

Every week.  New behaviors.  Med changes.  The wheel just keeps turning and turning and..... Each day is a blend of calm, hostility, humor and confusion. His daily disobedience lasts for a few hours.  Name calling, refusal to cooperate with hygiene and mundane daily activities.  Lots of "No's" and attempted aggression.  Thankfully, he no longer has the physical strength to be a harm to others. While I get the push back, ugly comments and mad faces, he is able to switch gears in the blink of an eye.  On shower days, no matter his temperament before his home health aide arrives, he is instantly accommodating. He now either sleeps the entire day and night away or he fights sleep completely.  I'm reminded of being a new mother and the advice of "sleep when they sleep".  (Impossible, BTW).  It's as if he knows I'm trying to rest and is hell bent on thwarting my plans.   FYI, our entire history together he has never once been able to let ...

It's as if a switch has been flipped.  Hospice began and within days he has become more anxious.  More afraid to be away from me for even a moment.  Pacing, wandering cluelessly through the house. The moment I get him settled and tucked in, he's up and needing to get to some unknown place.  Needing to complete a task that eludes him. He also now fights sleep.  He is the worst in the evenings. Sleeping 5 or 6 hours per night, where it used to be 12.  I'm exhausted.  He's exhausted.  We both wear the dark circles of fatigue.  However, I fear he suffers far more than I. His nurses have been wonderful and attentive.  Every struggle he experiences, they adjust his meds.  Their dedication to finding the right balance to calm him brings me peace. Hospice workers are the only professionals who give it to me straight, with compassion.  They give me gentle clarity around what is happening and what to expect.  In the frequent moments...

I am struggling with my anger toward God.  What possible plan could He have for him?  For me?  There cannot possibly be a Divine reason for this. Realizing that I may never understand makes it even worse. Home with him full time now.  Pushed through his Palliative Care assessment.  As of today, he is officially on Hospice. Granted help with general hygiene and nursing services 5 days per week.  Supplies being delivered.  End of life meds, although a tad premature, provided. Trying to digest my shock and relief.  We are here.  I'm scared and angry.  Sad and praying for Godspeed.  (Ironic, I know). In spite of being in the midst of this new hell, Randy is exhibiting a new emotional behavior... Joy. The joy of music. We've all heard how therapeutic music can be but to witness the effect on my gentle giant is astonishing. We are in the bowels (literally) of the part of this disease that most fear more than anything else yet, he sings. C...

 Calls for Palliative Care assessments have been made.  Applications for IHSS have been filed. Documents and files are being compiled. Randy has opened the door to stage 7.  The final stages of his journey. It's astonishing it's only been 5 short (and long) years to this place.   However, he is the happiest I've seen him in years. I'm struggling (once again) with this transition, fretting and willing myself to handle situations I could never have fathomed. All while he is in a wonderful place in his mind. What an interesting place for God to bestow a Blessing. Randy is giggly and all smiles.  Playful and ever the prankster.  He is interactive and silly. Softening the blow of the now daily occurrences of his failing mind and body. He joins in on our sarcastic banter, although gibberish in speech , but we know he's lucid in the moment.  Whatever comment he is trying to make, it's clear he is spot on. Laughing with him is the best. He'll gesture inappropr...

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 ...