"Courage is being scared to death...
Updated: Mar 23, 2018
... but saddling up anyway."
- John Wayne
I receive lots of pats on the back from family and friends regarding my sister and I taking care of our Mom. People always say how "hard it must be," use the words "courage," "perseverance," and praise us with the phrases "Proud of you," and "You two are doing an amazing job." (Which leads me to reflect that my sister and I must have been perceived as true f@%k ups before my Dad died, 'cause people are seriously stunned that we've manage to pull this off so far!) Praise for the job we're doing for Mom is always appreciated. Sometimes the flood gates burst open when I get verbal affirmation from others as Mom no longer has the capacity to thank us in that way, but it's made me examine my ideas about difficulty, courage, and perseverance, and in doing so I've realized the person who is really doing the heavy lifting around here is Mom.
While we start dying the minute we're born, most of us don't begin thinking about our death until well into our 5th or 6th decade, because death is the ultimate fear of the dark. It's why we invent myths, legends, and gods - the original fake news - to give us a sense of surety of the afterlife. Why would we want to give it serious contemplation before we have to?
And yet, this looming last call takes center stage when a terminal diagnosis is received; suddenly shit gets real.
Eight years ago, my parents had to get really real. They had to envision what a dementia future would look like. They had to get their finances and legal documents tidied up, which they did, but how did they perceive their future? How did they talk about life with dementia? I was not privy to those conversations, although I do know Dad was in denial for the first couple of years.
He kept claiming she didn't have dementia, she was just drunk, which did have some validity - Mom, forgetting that she already had one glass of wine poured, would start another, and another. It was a wine mine field around here at times, with half drank glasses in every room!
Of course, he eventually came to accept the diagnosis (and monitor the wine drinking a little more closely), and, besides hollering about missing spatulas every time I came over for dinner, took on the role of house husband, caring for Mom in the way she had cared for him, and us, all our lives.
I can't ask Mom now about what her first few years grappling with the diagnosis was like. Well, I could, but she couldn't remember, or if she could, she wouldn't be able to put those long ago thoughts/feelings into words. I do believe that since day one of the diagnosis, she began fortifying her courage, quietly, to herself, so as not to upset my father, or us. Knowing my mother, I would also guess she deliberately hid a spatula every once in awhile, and slyly walked the house draining strategically placed wine glasses while she faced her fears.
But now? Now I look at a woman who dementia has ratcheted up anxiety to shatter all previous records. Who's apprehension of the most common-place day-to-day dealings is well beyond the fears she harbored a few years ago. And while her previous incarnation may have wished for a quicker end by now, she still gets up each and every morning, and faces enormous challenges. Like figuring out why her feet are cold, how to remedy the situation, how to locate shoes, how to locate feet, how to put the shoes on the right feet so that when she stands up she isn't faced with the new dilemma that something at the end of her legs isn't quite right. And while it is hard, and takes perseverance and courage to help your parent to the end of their life, I know what shoes are, I know where shoes are, I KNOW WHAT FEET ARE AND HOW TO PUT MY SHOES ON THEM CORRECTLY. EVERYTIME.
This is my mother now. A woman who understands about 5% of her life, who is afraid of all unfamiliarity (and unfamiliarity is gaining on her daily), a woman who doesn't know her daughters name, but knows she can trust those two faces, and yet she makes it through every day with a smile, a laugh, a trick played on me or The Other Girl that entertains her to no end.
Her human spirit isn't diminishing with dementia, it's growing.
It's compelling her to trust when she has no reason to, to love strangers she no longer recognizes as family, to live entirely in the moment and be completely open to every person she encounters no longer weighed down by history, past kindnesses or transgressions. Every morning her eyes open and she perseveres. Every night she dredges up the courage to close her eyes, trusting the words of "Girl" that she is safe. Every day, my pride in the entirety of my mother, then and now, grows by leaps and bounds.
My sister and I long ago gave up mourning who Mom was - it did nothing but impede the job we needed to do - and in doing so, found the person she is. And that person, my friend, is Courage.