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Showing posts from January, 2023

Bittersweet

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 me sleep if he was

Knowledge

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 where I question myself about doing too little