Me
The aftermath of the dementia journey certainly has more than one, two, or three faces of grief. Hell, the trek from start to finish has got a million ways the sorrow holds your heart hostage, grips your gut and twists you into an emotional pretzel on any given caregiver day.
Like Margaret, I spend time reflecting on my journey with Mom, my sister, all the villagers who walked beside us those last five years. So many memories bring a smile to my face, laughter to my lips (also involving the "commode"). Some make me cringe with shame. But mostly I hold my head high knowing that for once the report card reads "Applied herself. Seriously. Like, over the top APPLIED HERSELF TO THE TASK!"
I also share Matt's anger; this end-of-life experience is so merciless for all involved with little to no support financially, physically, emotionally. Rage is the caregiver byproduct of the general public's collective shrug and "Good luck with that" brush off, and the equivalent "Sucks to be you" lack of political will to help.
We're all just scrambling to put together systems for a semi-decent existence for ourselves and our dementia loved one while pitted against a disease whose whole goal is to strip you both of any human decency you've ever possessed.
Your dementia person forgetting your name is the least of the indecencies that is going to befall them. They're going to forget how to bathe, how to eat with utensils, how to dress, how to go to the bathroom, if they've gone to the bathroom, if they need to wear clothes, if they need to eat, if they need to bathe. And in too many moments with my mom I forgot the decency of patience and compassion - hours, days, months of exhaustion rendering me indecent with shameful words flying out of me at hateful volumes.
Huh. I guess I just identified another of my faces of grief: remorse.
But my most prevalent face of grief seems to be an overwhelming lethargy. I would think that working on the documentary, an absolute passion, would be motivation enough to have me jumping out of bed raring to go. I don't know this person who is increasingly listless, half-hearted, who's brain knows this is an exciting time in my life, who's heart says, "Meh, let me know how it turns out."
The only thing that seems to motivate me is the pursuit of comfort with a vengeance: eating, drinking, smoking until I don't recognize my physical reflection in the mirror either.
Venting to a friend the other day about my embrace of this disinterested self-destruction she asked if it might be a fear of failing.
With the filmmaking process coming to a close I may be masking a deep fear - my fervent belief that if the world can see what dementia does to all involved it will inspire change - proved a falsehood, the world still won't care.
I've thought about that question a lot and come to the conclusion that my situation is a little more perverse... I'm actually spectacular at failing! Failing doesn't scare me at all! I know exactly what to do if this thing's a clunker: blame somebody else! Anybody else! Anyone who's not currently standing next to me, or within earshot.
No, I'm not afraid of failing. It's succeeding that terrifies the hell out of me.
Maybe that's why I am still falling apart a year after Mom's death, six year's after Dad's demise. I succeeded at dementia (as much as one can). I think the documentary is going to be a success. Perhaps the response to tear myself down to defeated loser status is my actual comfort zone.
I guess the real face of grief is an array of expressions. Not one emotion, one feeling, one primary cause, but a complex range of experiences, reactions, growths, and set-backs. I'm striving to be the Phoenix that rises from the ashes, but perhaps I'm just in the bonfire stage right now. I sure do hope those flames tamp down soon.
Mahmoud Farshchian, “The Last Breath of Phoenix,” 1999, oil on canvas
Companion Posts: Three Faces of Grief