This word does not exist
I’ve been processing my mother’s dementia diagnosis for years. I’ve many times been at a loss for words. Throughout April I challenged myself to associate one fake word to one real experience.
I’ve been processing my mother’s dementia diagnosis for three years. That’s not counting the years leading up to the official diagnosis; years characterized by a nagging and growing sense she was more than “quirky”.
Over those years I’ve many times been at a loss for words. Starting up a daily practice of making little public Instagram posts has helped me find my words. Throughout April I challenged myself to associate one fake word to one real experience.
Throughout the month I heard from others who resonated with this proposed dictionary. Reminding me that grief shared is grief halved, joy shared is joy doubled, and ideas shared are surely ideas multiplied.
Below are the results, deliberately not in alphabetical order. Dementia is not neat and tidy, so neither is this list. This list then gives a snapshot into one April of one person finding her words, one day at a time.
mulka: When a word does not exist to adequately describe a specific feeling or experience.
hirashi: When you spill your large (unsipped) hot chocolate in the car and it feels like the straw that broke the camel's back.
cushifogging: When you manage to jump through all the hoops while your loved one is asking questions on repeat.
minile: When you wonder why your loved one living with dementia suddenly stopped calling and whether that is the new normal.
dontjur: Finding joy in sadness.
pondolite: Describes a day with no commitments yet a low undercurrent of worry.
vivae: That clean sheets feeling. The best.
scroppy: When you are feeling a little blue from memories and so you go on a bike ride in the sunshine. 🚲
biolaudonic: When the person you are with gets mildly irritated at your mother's continued phone call interruptions during your visit.
corpus lulavium: Making logistics seem effortless and low-key while trying to hurry because you are on a tight schedule.
kirifo: When you casually drop in the lunch convo with a colleague that your priorities have changed with your mom's diagnosis of dementia (thereby hopefully helping to normalize that it’s not just having kids that changes things).
dendyseril: To appreciate the evolution of something natural, even if it's something that others discard and try to obliterate.
frumptroost: The strange and depressing comfort in knowing suffering is shared.
passerbyshire: When you are overcome with the urge to explain and clarify, "she was not always this way".
unventurable: That lingering uncertainty on when this all started and how to count how long it's been and therefore how much longer it might go.
parastetop: When you realize it's a marathon.
leemory: That nagging suspicion you'll miss the things that currently aggravate.
quinquestance: 27 phone calls in one day.
recyclogitation: That feeling of getting retriggered courtesy of your teenage years.
diposinate: To observe that nagging feeling that maybe you are on the brink of a big change.
chemoecon: Someone talking to you instead of directly to your loved one.
incorbid: The complicated shared grief you feel when someone's loved one with dementia passes.
skitterie: An elusive search, like for the perfect round rock.
unapparatchable: Feeling of wanting time to hurry up. But also not.
insentin: Dementia. But diagnosed instead as a caregiver's disease.
antipamidation: That ambiguous feeling when someone says they remember when their loved one was as at that stage.
unconventiously: Your stride, finding its way in a new 'normal.
warpendow: When nearly everything you see or think is seasoned ' with a dementia perspective.
talesome: Feeling of accomplishment when you’ve made it through another daunting challenge!
[Credit to thisworddoesnotexist.com for cranking out the fake words to match my real observations.]