Updated: Sep 15, 2020
Stumped Town Dementia is beyond baffled to present:
Stage 7: Easier. Harder. A Lot Less Fun.
A work in progress. Or shall I say, decline?
ACT I: EASIER
I have heard many a family caregiver on the other side of this journey say that Stage 7 is often easier than the melodramatic malfeasance of 1 through 6 that precede it. I'm finding this to be true. Much of Mom's former dementia rage has exited stage right. Her dementia-diva has also simmered down as she requires less entertainment in her day leaving us with fewer opportunities to infuriate.
While we still have driving outings daily, her indifference to these grows. Alternately, her anxiety at being at home wanes.
And at home, when she is not shuffling "The Loop" (bedroom > front door > living room > kitchen > annnnddd back), she is oft times curled up sideways on her bed. She naps! For the love of gawd, she finally naps!
As of late, she is rarely a formidable obstruction while preparing dinner. Many an evening I forget she's in the house at all as I busily chop, whisk, measure, and cook up a feast, lost in my own thoughts when unassailed by even a dash of dementia.
And that feels weird. Taking pleasure in making a meal - single-mindedly enjoying the process without the constant vigilance of guarding ingredients, utensils, cookware - feels familiar, like an elusive aroma of how it used to be.
It feels like... what I once considered... normal?
While the concept of "normal" has been permanently banished in my world thanks to this journey (and good riddance too - what a waste of worry), I have been getting glimpses of what life will be like when dementia no longer dominates. Combined, these changes have made Mom's care an easier journey. Bravo, Stage 7! Bravo!
ACT II: HARDER
Regardless of the rousing applause for ACT I, Stage 7 is still dementia, and still quite willing to rain pain and sorrow down from the lights, drowning those of us with front row seats to this final performance.
You'd think the waning of the aggression would be met with nothing but standing ovations night after night, but I'm pummeled with regret at its passing. Now me thinks the lady doth protest not enough.
While I'm frequently giddy with glee when she walks into the shower with no war waged, it is short-lived as I realize she's giving up skirmishes because she's that much closer to losing the war.
And when that little epiphany hits it crushes my heart, catching my breath in agony, and yet simultaneously washing over me with relief. Conflicted by the twin tracks of "Stay, Mom, stay!" and "End this!" I mire myself in the guilt of the latter; a dark, sticky, mixture of sorrow, unworthiness, and remorse.
Stage 7 is emotionally draining, the end yet not the end. My mind says prepare, my heart says hold on. Outwardly I move Mom and I through our days in the new normal. But inward I am untethered, no foothold in either happiness or despair. Navigating my own brain is exhaustive, I can't light on any logic to clear the haze, to find my way out of this morass of how/what I'm supposed to be feeling, how/what I'm supposed to be doing.
Boo, hiss Stage 7. Boo. Hiss.
ACT III: A LOT LESS FUN
As counter intuitive as it may seem in dementia we've frequently been smothered in laughter and joy these last four years. But that curtain is slowly coming down.
Smiles are rare and fleeting; a slightly upturned lip, a nano second of a glint of mischief in her eyes, then gone for a day or two, swept away by a pervasive indifference to the world around her.
Laughter is rarer still. The other day, as we drove around for over an hour in total silence between us, I realized that I have numbed myself to this defection. It's as if she is a life-sized ventriloquial doll who participates in our scenes only through the funny voices, or goofy animation I bestow upon her.
Me entertaining me trying to entertain her is scarcely responded to and it's a grievous blow to watch my partner in playfulness slip out of sight.
Yet I know not what else to do. When coaxing a smile or a glint of enjoyment out of Mom I am completely focused on her, whether I am successful or not. When I succumb to her slow fade from the spotlight, her retreat to the back of the chorus, I'm left center-stage dancing and singing my heart out to no one, and that, my friends, is no fun at all.
Maybe I'm currently in rehearsal for Stage 8, dubbed by a favorite Alzconnected forum member as the period of a dementia caregiver's recovery after a loved one has died.
I don't know.
But I continue to strut and fret my hour upon the stage, telling my tale like an idiot while Mom's sound and fury fades, both of us signifying nothing.
Life's but a walking shadow, a poor player,
That struts and frets his hour upon the stage,
And then is heard no more. It is a tale
Told by an idiot, full of sound and fury,
~ Macbeth, William Shakespeare