dear dementia, i hate you. your sinister ways of deception and demise are a killer. but her spirit is strong, and her doctors can't believe she's lived this long. she's been yanked away from us but the shell of her remains and i only have you to blame. you are absolutely the ugliest disease imaginable and my beautiful momma has been emptied by you. dementia, you fuck with my head more than anything else in this world. you bring bad days and hospice nurses to manage the constant pain with morphine and oxycontin and vacant faraway eyes and the illusion of smiles in a nonverbal patient with nurses left to read grimaces, the gnawing of hands, the furrowed brow. no emotions or real tears but instead silent cries and subtle recognitions that may or may not remain... based on superstition? the moon? maybe it's the tide or barometric pressure in a brain that's lost all cognitive impairment but always perks up and somehow remembers how to hold and eat an ice cream cone. sometimes these tiny truths are hard to swallow. my momma loves me like a rock. she rocks me like the rock of ages. forever and ever amen.
I will not be angry with god, the universe, the karmic wheel or the divine plan. I will always trust and believe in the power of love. my heart will not turn to a small bitter stone. and I will continue to say thank you, for the rest of my days. #dementia
oh mom. you're a baby bird and I curl up in the nest of your bed just to get close. your eyes only opened once these past few days. when I laughed, they fluttered open like it took all your strength but you raised them to the window, to the light, like a flower reaching for the sun. your pupils as tiny as a pinhole. where are you now? I wonder. what stirs your soul? if there's anything beautiful about dementia it's astral projection. her ability to come and go between the thin veil that separates our worlds. she's in Maine, she's in Colorado, she's in his bed in Virginia. she is, eternally, the thread that ties us.
I am helpless in the presence of her pain until a nurse brings more OxyContin. eyes squeezed shut all language is unspoken, gestures of discomfort nearly unbearable to witness. that was yesterday, on the tail end of a flu epidemic that had her facility on lock down. today is a world away and she arrived eyes bright. then later, the whispered hushed words only spoken to herself. she was trying to tell me something and I grasp at these silent prayers, her lips moving to no one but herself and the thin line she walks between heaven and earth. this is my reality, this is not my reality. this is my life, this is not my life.
"rejoice rejoice we have no choice but to carry on" the power of favorite songs from my youth come at me from all angles here. I push her in a wheelchair today just as I was pushed in a wheelchair yesterday through two different airports. this is end of life dementia. it's different this time, I can feel it as can everyone around her. life used to move at a snails pace and i didn't think it possible to move any slower, but this is life standing still. waiting. cocooned and withdrawn. this is her no longer eating more than two bites, no longer swallowing, no longer opening her eyes. like a majestic clock winding down until it stops ticking completely. she had a beautiful life, it wasn't easy, but she's the strongest woman I know and I like to think she taught me that strength in her own quiet way. "carry on, love is coming to us all." I love you mom. always and always. forever and ever, amen. ~
"Everyone was supposed to help their family, so gifts were usually handmade and took all year to prepare and write appropriate poems to go with them." -
A memory of Christmases in the early 1900's in rural Whitewater, Wisconsin.
By: Anne Auten
Recently, a friend posted that we had 7 weeks until Christmas. My first thought was wondering how this was possible, when in Georgia, we've still been enjoying 70 degree afternoons. My second thought was a horrifying realization. "Oh no! When does that damn elf show up and reek havoc on my bedtime rituals?"
When my daughter was small, some marketing genius made a fortune turning a creepy looking elf into a family tradition. I wanted no part of it, until the day that my sweet and precious little girl said, "Mama, why doesn't Santa send me an elf?" Drats, foiled again by Christmas marketeers! Pronto, the elf appeared, a little late, but much to the delight of my child.
Last year, I thought I might get some reprieve, as my little girl is now a teenager and professes not to believe in the Santa that I still insist is real. Alas, my mention of wouldn't it be great if the Elf-on-the-Shelf just got to sit on the shelf this year, was greeted with a resounding, drawn out, "Nooooooooo!" large puppy dog eyes, and a confession. "Mama? You know how I tell you that I don't really believe in Santa and all that Christmas magic stuff? Well, a little part of me really still wants to believe." So, I will embrace the elf, because I believe in Christmas Magic and in family holiday traditions. But most of all, I believe in the magic of the memories that transport us back in time to places so real and palpable that we can taste and smell, see, touch, and hear our thoughts, like my memory in the 1970's kitchen of my childhood home.
A raw and honest journey of grief, love, and self-rediscovery unfolded through writing and art.
Writing and Artwork By: Anne Auten
In 15 horrible, excruciatingly gut-wrenching minutes, it was over; Mama was gone.
I was not prepared to watch my mama die.
Twice before I had sat in silent vigil, holding the hand of someone else's loved one, while they discreetly drifted away in a coma-like state over the course of several hours. But, not Mama. She was wide awake. I don't think that either one of us thought that her hospice care would only last 23.5 hours. But, mercifully, that was it.
I had no idea what hospice care in my home would mean. I only knew that after 7 weeks of hospitalization, on 4 different floors, 3 stays in CCU, 5 different procedures, 1 operation and innumerable labs, x-rays, and nights in a sleeper recliner, we were both exhausted and had no fight left. Mom said, "Let's get out of here," and so we did. In a few short hours, Hospice managed to deliver an entire roomful of equipment, and my mama, into the parlor of my house. My husband had arranged her bird feeders outside the large window so she could watch the outside world go by. The medics propped her up in a railed, hospital bed with every pillow in the house stuffed under her knees, arms, back, and head, and there she sat, like Cleopatra floating down the Nile on a barge, with oxygen blowing up her nose like a cyclone. Then, everyone left.
I hadn't realized that we would actually be alone or that I would quit being the patient advocate and become the lifeline.
Mom and I had talked about how great it would be for me to be able to sleep in my own bed. We had even purchased a baby monitor, so that I could hear her in the night if she needed me, but I was terrified to be that far from her. Her one night at home, I spent sleeping either on the couch or straight up in a chair next to her bed or wide awake wondering how I was going to be able to do this night after night.
I was so grateful the next afternoon when the hospice nurse showed up and had an official way to log the barrage of medications that I was responsible for administering. We freshened Mama up, and she wanted to sit on the side of the bed. During the night, Mom had had an episode of feeling like she couldn't breathe, and I had turned the oxygen to max. The nurse tried to whisper that I needed to lower it again over the next couple of hours. Of course, Mom's selective hearing kicked in. She told me that she didn't trust the nurse and thought she was trying to do her in. But, the truth was that my mama was dying. Her lungs were full of fluid, and she was drowning. I only had morphine and anti-anxiety drugs to combat time.
Imagine my stupefaction when the nurse told me that she was leaving, that it would be a couple days before someone else would come, and that I could call the hotline number for any questions. My last nerve was blown to kingdom come! So, I did what any woman would do; I made myself an elixir-of-courage martini and started cooking dinner.
Mama had had a little burst of energy while she sat on the edge of the bed that afternoon, and we had talked about nothing and everything for a couple of hours. She suddenly looked very tired, so I propped her back in the bed and brought her supper. She wasn't really hungry. She tried about 4 bites of a soup that she declared was the most delicious thing she had ever eaten, and commenced gazing out the window.
As I wondered what she was looking at, she began a low, guttural, rhythmic humming and started shaking the hand rails of her bed. I called the hospice hotline. I gave her the medicines they prescribed, like bringing the hemlock to Socrates. "Mom, do you want anything?" She shook her head no, but kept making the sound and staring out the window. I knew this was the end, and so did she.
I sat on one side of her, holding her hand, and my husband sat on the other. For 15 minutes we served as witness, watching 90 years of memories of life dissipate into the ethers: growing up in the Great Depression; watching her classmates trudge off to WWII and not return; knitting for soldiers; canning Victory gardens; working in an ammunitions plant; attending the Vogue School of Design; contracting Polio; regularly donating blood for the Salk vaccine; working as a milliner; flying all over the country for work as a woman in the 1950's; meeting Dad; giving birth to me; losing her own parents. Christmases, Thanksgivings, birthdays, big things, and tiny details fleeting by until the final grains of sand slipped through her hourglass, her labored breathing became less frequent, the shaking ceased, the humming faded away, and the light extinguished from her eyes.
It was over… and, then it began.
I knew nothing about grief. I knew a whole lot about how to shove every emotion into the darkest crevice of my soul and lock it away. I had been practicing that for years; I was the consummate emotion hoarder. I knew a whole lot about picking up all the pieces and putting them back together in new, easier to deal with ways. I was accomplished at recreating undesirable history into new and magnificent plots. The problem was that Mama was the glue that I had used to hold my puzzles together, and now she was gone. And, as the pieces wouldn't stick together anymore, I discovered that not only was there no more room left to hold any of my grief over losing Mama, but without the glue, all those ancient, shrouded feelings began to pry their way out of the catacombs where I had left them buried.
At first I didn't notice it so much. After a few weeks, I trudged back to work. My auto-pilot's auto-pilot was on auto pilot. Every day I would climb into the car and drive 30 miles to work and try not to think about anything other than how much I hated driving those 30 miles. But one day, all those locked away feelings trying to escape managed to eroded a small fissure in the core of my being. The dripping leak became a flood, and my flood of once-trapped emotions fractured my spirit and left me with a raw and gaping wound that felt like an abyss.
I was Wylie Coyote, leaning over the precipice, contemplating the distance to the bottom, and hoping that the Road Runner wasn't going to sneak up and scare me over the edge, leaving me as a tiny plume of dust at the bottom. The irony of my mother drowning in her own fluid and me drowning in my own despondency was not lost on me. I, too, felt unable to breathe, engulfed and sinking, and gasping for air, for life. I needed for the constant bombardment to stop; I was pummeled in every direction by sounds, smells, voices, and responsibilities.
At the pinnacle of my inundation, a miracle occurred. Some base, primal instinct took over. I knew that in order to survive, I would need to make as much of my world as possible come to a screeching halt and try to learn to breathe again. So, I took a sabbatical from work, a whole 24 weeks, a gift from God and the Universe.
The first thing that I learned is that I show myself no compassion. I am a relentless taskmaster, an unyielding overachiever of the worst kind. I had my first week of leave all planned out with schedules and project lists for each day, trying to wrap up Mama's estate into a neat, little, time-lined package. After a week or so of that, I sat on the deck one morning having coffee, and realized that I had made myself so busy that I had no time to heal or to grieve, or even to think. I did need to accomplish some important things during my time off, but I didn't have to do them all at once. Back off and relax a little; so, I ordered some watercolor pens and began painting.
I have a BFA with a concentration in painting, but hadn't painted since college. I lost my mojo when I graduated and got my first real job. Unfortunately my real jobs have sucked the creative life out of me and left me with no artistic energy for most of the last 27 years. Trying not to intimidate myself with a large, blank piece of paper, I bought watercolor postcards. I sat outside each morning and made myself fill one up. What ensued was a series of 13 self-reflective watercolors.
Initially, I didn't realize the depth of allegory and hidden meaning that these paintings would have for me. It wasn't until I began talking and writing about them that their lessons began to emerge and continue to reveal them selves like layers of an onion.