Susan’s “The Long Hello” Blog
“The Long Hello” is a testament to me and my Moeder’s (I call her Moeder - which means ‘Mom’ in Dutch) journey together with Alzheimer’s – her being diagnosed with it and me watching her struggle with its harsh realities.
My grandmother suffered from Alzheimer’s for years before her death at the age of 96 in 2011. I watched that struggle as well. It was my Moeder’s greatest fear that she too would get it someday. Unfortunately, her diagnosis came much sooner than my grandmother’s.
She is now in the advanced stage of the disease and with that comes acceptance and the ability to adapt to the changes in her far easier than before, but also crippling grief, frustration, sadness, and the feeling that she is taking a piece of me with her.
Watching her slowly and cruelly lose her mind has me feeling like I too am disappearing, but even with this reservoir of sadness within me I still find myself wanting to fight against those feelings. Even though life at times is pulling me under, I choose to kick against the bottom, break the surface, and breathe. Not just live. Live vibrantly. Obviously there are constraints to that, but I’ve carved a couple new paths and this is one: a space where I can grieve, where I can lash out at this horrible disease, and a place where I can perhaps offer some form of hope, and provide resources and support to others who are going through the same thing.
In the face of this incredible void, I am choosing purpose and meaning through this mechanism. I want to remind myself that I am not leaving. Even as my mother’s light continues to fade, and her memories of me fade, I want to feel like I am still here.
I am not leaving. I am arriving.
I read lots of quotes and articles that bring me a lot of inspiration, but some just say exactly what I want to put into this world – and this is one of them:
[Someday] “every inch of me shall perish. Every inch, but one. An inch. It is small and it is fragile and it is the only thing in the world worth having. We must never lose it or give it away… I hope that the world turns, and that things get better. But what I hope most of all is that you understand what I mean when I tell you that, even though I do not know you, and even though I may never meet you, laugh with you, cry with you, or kiss you, I love you. With all my heart, I love you.”
May what you read here resonate with you and bring you purpose and meaning as well. Be well.
Grief in plain sight…
It’s happening again. Deeper into the abyss. Darker now. And with it comes a new wave of grief…
That dark, sinking, relentlessness of March 19th…
March 19th. It’s just another day. Only not to me. I could feel March 19th coming…
You are a prayer in the flesh…
With my impending trip back home fast approaching, I find myself reliving old memories and thinking back to the first time my mom forgot who I was…
To all my loves…this is for you.
When I did my first triathlon in 2011, I knew people who had done the race and I thought they were nuts. It seemed inconceivable to me to be able to get your body and your mind to do something so extreme. And I thought – why would you want to do that to yourself?
Famous last words…
We are ravaged…
I read Karen Wilder’s (Gene Wilder’s widow) essay via ABC News this morning on the subway to the gym. Gene Wilder suffered with Alzheimer’s for 6 years before dying in 2016. Karen was his primary caregiver.
I was painfully reminded that “unlike other diagnoses, even some cancers, this one offers not even a shred of hope for survival.” Oof.
The words were a punch to the gut.
This is a process…
She jokingly called me “Mommy” during my visit. She did this because she thought I was ‘babying’ her. Being an overprotective daughter. My response to this always made her laugh: “Moeder…this is just full service daughtering! Complete with making appointments, replacing light bulbs, bringing in repair people, laundry, grocery shopping, chauffeur service, making funny faces at you, and holding hands!” She got a kick out of my response every time. It helped to lighten the mood…
What are we so afraid of?
I remember I used to get really upset at my mom. She’s suffered from depression pretty much her whole life and she let it control her. She isolated herself from her friends…in part from her family…from living really. She’s experienced so much loss in her life and she let it bury her. And God, it used to frustrate me…
Finding peace in this violence…
She’s lost her empathy.
These days her reactions to the things I say are stoic and unsentimental, or almost as if what I say goes in one ear and out the other. We live in this alternate universe with one another, where she is this impassive person that I don’t recognize and I’m totally great and living this amazing life.
Lies.
A reminder in emotional violence…
June 2, 1991.
She has a scrapbook. It details the last months of his life. Literally all the scrupulous details down to the last moments before the light went out…plane tickets, newspaper clippings, ticket stubs, papers with his writings on it, schedules, pictures, first-hand accounts of his last days…last words…last minutes…even old napkins. She even wrote in the margins about what was happening and how it felt. As if to hold that time still. I get that…
The unknown abyss…
Last year on the eve of my first Olympic triathlon, I wrote to someone very special to me. I wrote to her about how my mother’s illness had advanced over the last several months and how often times I wondered if she was taking a piece of me with her…
The world is upside down…
Ongoing trauma. The things you think about…when you’re in the trench…
The woman formally known as…
“She’s slipping away.”
I have repeated those words in my head and out of loud for the better part of the last 3 days…
Joy is hard…
I look at what’s happening now and I think: this is another defining loss. I was 6 years old when I had my first one (my dad) and that defined my being for a long time…
The art of losing…
The art of losing isn’t hard to master; so many things seem filled with the intent to be lost that their loss is no disaster…
The long hello…
I’ve been writing, cutting, pasting, reading, and re-reading this entry for a couple weeks now. No more drafts. Just throwing it out into the abyss…