Want to know my ugliest truth about being a family caregiver to dementia? When struck full-force with the worst of the disease I am capable of pure malevolence.
And it doesn't matter how much respite I've accessed.
And it doesn't matter how much self-care I've practiced.
And it doesn't matter that the day, the hour, the minute before I was filled with calm, patience, devotion.
Dementia will always provide a trigger that will reveal myself to myself as despicable, hateful, cold. Loathsome when I thought I was loving, cruel when I thought I was compassionate.
I screamed lightning bolts at my mother this morning. Uncontrollable in my rage. I stormed her with the force of a hurricane into the shower as her shit filled hands gripped every surface they could find for purchase.
I didn't care that she was scared.
I didn't care that she had soap in her eyes.
I didn't care that she screamed in anger when I had to dig into her buttocks with a washcloth to remove the last of the shit trapped there.
I didn't care.
Just when I think I have this dementia-thing down, that I am handling it with grace and humor, Dementia brings me to my knees, unveils the worst of myself, sneers at my hubris, reveals my past successes as pure conceit, and roars with frenzied glee as the horror of who I truly am envelopes me.
Mom has already forgotten it, but I never will. This morning, facing the cruel self-realization of what I'm capable of when catastrophic dementia adversity assails us, will haunt me to the end of my days.
What is left now is the after effects of the rage - a dull pain that thrums through my skull and a pit of disgust so heavy and onerous in my gut I can't even face myself. But I will. I will examine this morning and in doing so I will note for the future what to do differently - walk away for starters when my brain readies for an explosion, regardless of how much shit Mom spreads throughout the house before I can collect myself and return to the situation.
But right now I need to be sickened. I need to be repulsed.
Because Dementia is not going to leave us alone. Because Dementia is not going to suddenly develop empathy. Because Dementia is not gonna say "Aww, you guys have suffered enough, I'll go torture someone else now."
I need to sear this morning in my brain; drown myself in this, my ugliest of truths so when the next dementia onslaught overtakes me, I will remember this devastation and have a chance that my ugliest of truths can be overcome.
You know what? You're just not in denial!
You haven't left your loved one to live alone. YOU haven't said "it's not that bad yet" and you'll deal with things "as they come"...or rather, that you'll deal with things "when you come" or "if you come".
Others have done that, and then it's neighbors, friends, the caregiver hired a few hours per week, the house cleaners, and delivery persons that deal with things when they come. They are slapped in the face with the smell of soaked furniture, the inedibles apparently eaten, the spill of pills, the nakedness, the lost outside, the distress over invisible crises, the evidence of exploitations, and the textbook "poop art" gallery.
If you could just…
Wow, thank you for sharing that. I can't deny I felt that rage, and how dementia pushes you to your limits. I'm sorry you went through this, but you can't hold on to this. It's emotional torture -let it go, your mum has and as you say you now know how to handle it. Thank you for courage in sharing this, it's real life and shit happens.
Thank you for sharing your ugliest truth. I'm very happy that I happened onto your blog.
Man, sven, I get, get, get you. I hope you have found some relief as the hours march on, putting much needed distance between you and this morning. You are not alone. We are not alone. We are all doing the best we can, and sometimes our best is pretty awful. I'm rooting for 'ya that tomorrow is better day!
I just found this blog and I'm thanking God for you! Your story is so similar to mine. This morning was hell and I've been beating myself up mentally for hours. I thought I was this loving compassionate person but adversity seems to have proven me wrong. It helps to know I'm not alone.