The Unseen Sacrifices: A Personal Reflection on Dazey's Journey in Caregiving
The War:
A stone-cold silence prevails—there's no communication, no empathy, and no response.
“What I see is the worst display of anger and contempt, marked by disrespectful and insulting messages, conversations, and most communication from outside the cottage property. These are paired with manipulative 'private chats' that attempt to recreate the past when such behavior consistently achieves the desired results. Current challenges are being used as leverage, causing unnecessary stress to the one I am fighting for. It has become a test of wills to see who will break first. This stubborn and vicious cycle is a waste of time—what is it all for?” LS, Founder of Dazey Diary
The Fight:
“Angry, bitter words from misunderstandings, jealousy, and a total lack of empathy years in the making. Am I an innocent bystander? No, I'm as scrappy as they come, with some spice added for good balance. I have a gift of words that can shatter any hopes of recovery. I was chosen for a specific purpose and can and always will rise to the challenge. It takes a long time to push me to that point, but light it all on fire and watch it burn to the ground! Did I always know when to back off and reassess? NO...I learned to stop engaging in the toxic cycle of hatred and disconnect over 3 years ago. I did not create the argument; I would not back down. ~~~Today is better than two years ago; my world was closing in. So many changes in such a short time with so many opinions floating in this gossipy town that isn't yet a big city because everyone knows everyone and hears the stories. The things they think they know but never ask the one who knows. I can count on less than ten digits who asked for clarification. Less than that for those who asked if I could use a little assistance, guidance, or a listening ear. Because we are all friends and family, right? That is what we do... right? Take care of each other and have each other's back when things are rough. Am I wrong?” ~LS
We are all taught to be there for each other, 'blood is thicker...' is the phrase used during an argument. This particularly nasty argument has a few fun statements:
You need to rein her in.
You are not family and will never understand the dynamic.
You have blinders on.
Get your head out of the sand.
Your dead to me (this was every other week till the unblock button broke)
My question: When did you become so bitter and callous?
The closeness we felt was merely superficial. It was a facade for the world to see, a way to conform to expectations.
“This too shall pass. Everything will work out,” we told ourselves for decades.
“But no, that ship has already sailed. Keep me dead in their minds, we good here” ~ LS
The New Possibility:
Mutual understanding.
Text or email communication only.
Schedule and boundaries.
“Seems reasonable, yes? I mean... I thought so when the professionals guided us to a new plan to 'lower the temp and find common ground.' It isn't that they have a problem with me taking all responsibility moving forward in our journey; they do not want to adjust to the changes needed for well-being and safety. Changes need to come in a small, slow, and consistent manner when able, controlled for that invisible bubble of independence and success in a moderately normal everyday-is-fine kind of way. No one was ever going to step up in the way I was asked and agreed to. The thing is, they didn't get mad until the ‘gifts’ stopped.” ~ LS
Things it is NOT:
Control for control's sake
Unjustified
Abusive
Neglectful
Harmful
Selfish
Actual reasons:
An Invisible Bubble of Independence
Maintain Critical thinking for as long as possible.
Consistency and routine are the absolute best outcomes for long-term care.
IT ISN'T ABOUT YOU! IT ISN'T ABOUT ME!!!!
“If there is only one thing, I ever leave you with in reading my sassy ass blog, Alzheimer's is the all-time worst. Every day we learn more and find new ways to help and cope. It will test your patience, understanding, and peace to your core. My fight is not and has never been with the ones who live inside our invisible controlled bubble.” ~ LS, Founder of Dazey Diary
The fight is only about:
scheduling,
consistency,
empathy,
Understanding.
Money…
“Anything else is stupid bullshit either made up, hyped up for personal gain, or exaggerated to best fit the narrative of a few. A care recipient was recently asked: 'How is the cottage going to be split up when you are gone since it is on S>>>’s property?' The answer is given by the care recipient: “-to ask this is just awful, you all know I'm not dead yet.” (this was paraphrased to save the snowflake sensibilities of the damned)
What exactly is the fight??? you ask….
I asked and asked for other possibilities, but all I get is vague innuendo and blind contempt for boundaries and structure:
You know how she is...
You need to lower the temp.
You need to fix it
You are the blame, you are the sole reason.
No understanding, no empathy, no accountability, no critical thinking. Only entitled bullshit of the spoiled brat type of shit that comes with becoming an adult… In my humble opinion, this house doesn’t roll like that, never has, and never will, especially now in caregiving for cognitive impairment and the needs of one who is brilliant and independent and deserves all the kindness and energy we can give without losing ourselves in the mix.” ~ LS
As I write this, I choose to leave you with our founder’s thoughts:
“Why compromise the delicate and fragile bubble of independence and protection for personal gain, without carefully considering the potential consequences that could lead to chaos and anxiety for those we cherish? In the end, is it truly worth risking the well-being of another?
This thought-provoking question lies at the very heart of Dazey Diaries and our small yet mighty community, which was born from the chaos and trauma of an unfinished story. I am not a medical professional in a white coat; rather, I am a caregiver who embarked on this journey as a family member—daughter, sister, co-worker, friend, aunt, and cousin. Today, I have discovered a way to navigate this complex landscape and make a difference for others who have curiosity, needs, or desires in caregiving and wish to explore the small, often hidden world of cognitive impairment.” ~LS
