(Warning: An "F" bomb and a bit of food stuck in my teeth
may make this video objectionable to some viewers.)
I am in crisis mode, and it seems to have come out of nowhere, but looking back I realize that since Mom hit the rage stage this January my caregiver acumen has been slowly draining away.
Being so slammed in June didn't help either as I had neither the time nor the will to write - something I now realize could have helped avert, or at least delay, this crisis. I've grown to rely on this process of words-to-screen to release building caregiver pressures, examine my perspectives, and realize improvements to care, for both Mom and myself.
Instead, a volcano of stress has been smoldering; bursts of frustration erupting in the form of horrible words hissed, spat, flung at my dementia mother's heart.
Dementia has been more kind to Mom than I have lately - quickly scattering to the ether the memories of her daughter's sudden whirlwinds of rage.
And what is bringing me down? What has turned out to be the chink in my caregiving armor? A simple, two letter word: "No."
After six months of this one word's constant employment - sometimes uttered in a steely whisper, sometimes hurled at me with ear-splitting force, forever on the tip of her tongue - I realize it's my Achilles heel. "No" she won't go into the grocery store. "No" she won't go to the bathroom. Okay, she will go to the bathroom but "No!" to pulling down her pull-ups, and then "NO!" to getting urine soaked pull-ups off. "NO! NO! NO! NOOOOO!" to showers and a bevy of other innocuous routines, leaving me in utter defeat, beaten down by a little old lady who looks like hell and smells like excrement.
A constant theme in the Teepa Snow training seminar I attended in June was "Don't give up, let go." I am often rigid in my scheduling of tasks to accomplish each day, a personality trait that has allowed me to excel in my other careers, but when it leaks into caregiving it's debilitating. I now try and recognize when I'm stuck in a "must accomplish teeth brushing NOW" loop. I stop, take a breath, and "Let go." The Other Girl and MotherMinder have also offered valuable advice - I try and do too much with Mom; "Let go." I beat myself up too much; "Let go."
I've observed my sister and MotherMinder closely, have worked to adopt their strategies, have incorporated the new caregiving skills I learned at the seminar into my interactions with Mom, have scoured forums and FB groups for tips from other caregivers, and yet I'm still struggling with deep despair; a caregiver exhaustion that has overloaded my body and soul, leaving me a walking, talking shell of nothing.
When MotherMinder took over Mom last Saturday afternoon, I began my free hours determined to hack away at tasks that should have been done a month ago. I started with washing the sheets on my bed and... that's where I stopped. Seven hours later I'm still sobbing on an unmade bed, devastated with the realization that I'm no longer able to provide one-on-one care for Mom in anything but the most minimal capacity.
I couldn't get out of bed, but I still could recognize a wake-up call - it's time to not give up, but "let go" of care.
I am the foundation that the goal of keeping Mom at home is built on - that goal has not changed, and it's how I will continue to contribute to our team, by supporting and managing those who soldier on with the one-on-one care. I will cut back my hands-on care days and focus on what I do well: keeping the carousel of the house, vehicle maintenance, bill paying, financial planning, doctor appointments, etc. spinning right round, baby, right round.
I believe I can retain one of my Mom days. While I'll never have my sister or MotherMinder's patience with Mom's constant "No"s, I am confident that I can manage one day a week without losing my mind on Mom. And this stage won't last forever, my caregiver skills may once again be just what's needed for Dementia's next act.
And if that is still too much for me, well, I'm a caregiver, if something ain't working, I'll fix it.
So, time to start looking for another p/t in-home care person. Recruitment is now open to welcome an additional villager to Stumped Town Dementia! With fewer hands-on caregiving days on my plate I will work hard to banish my rage and replace it with compassion, restoring my caregiver confidence that I can, and will, be Horrible no more.