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 awake.  Why do I feel like some small part of him finds humor in this now?

Saturday was a sleepless night for him.  Roaming the hallway and bedrooms.  Waking his sleeping Dad with pokes and prods.  (It was my night away).  Randy was incoherent and disheveled.  Dad too, looked rough, to say the least.

However, a visit from a dear friend that afternoon, prompted smiles, hugs and he may or may not have grabbed her derrière.  (Sorry X).

My return was even greeted with him taking me into his arms to try dancing.  It was a feeble attempt but heartwarming just the same.  

Monday morning his RN visited and we discussed these behaviors.  His speech is almost gone, in regards to actual words.  He knew his name but was unaware of who I was or his birthdate.  He has to be shown how to sit in a chair.  How to get into bed.  How to drink through a straw.  His food intake has reduced dramatically and he is losing weight.  (He will however, eat ANYTHING fried or sugary)

Based on these changes and the pace at which they are occurring , his RN went over what I should expect next and we had a real conversation about life expectancy.

The short time he has left will be the toughest yet.  I pray for the blessing of Godspeed.  For our suffering to end.  For his father to find peace in losing another child.  For our children to process losing a parent. 

In the meantime, we will endure the rough moments, forgive the unkind words, embrace the dancing and eat all the junk food.

Cheers💜