A sampling from my book, Forgetting Eileen. To be published this Winter. (Still being edited...and I value your thoughts) These are just tidbits from various chapters.
Forgetting Eileen is an account of my last year with my mother, Eileen, as she began forgetting her life. Alzheimer's took her memories; her memories of herself. The very second I was told of my mother's disease, Alzheimer's, any negative memories were wiped out of my mind. Period. Yes, just like that! In a mere instant. Only remaining memories were the beautiful ones. My life as a caregiver continued but in a more immediate capacity, with the end of days imminent. Caregiving for a loved one with Alzheimer's, or any disease, is 24/7, all-encompassing, and depleting. It is also so precious and every moment pronounced. Loved ones suffer from this disease also, and it changes the alchemy, the very essence of our being. Life never looks the same, does it? 47 years of history my mother and I shared, in the end, both my mother and I began Forgetting Eileen.
Forgetting Eileen
“Where were you in the years I’d learn to walk alone and all those months
I never could quite seem to grasp
The concept of a soul.
Or, the days I’d sit and watch the windowsill While nature bathed it clean
And try to understand
Why mama feared
God’s great and mighty tears...” AH.
Chapter One
November 9th, 2014
Tick, tock. Tick, tock. A mantle clock echoed in the beige room. It is' sounds like that of dripping water that occurs during the nighttime when rest and respite are needed, plaguing the silence of a home. The ticks seemed like torture. I can overcome this, I thought, and soon I began counting each tick, challenging my focus, as I tried to count to one minute. One one thousand, two one thousand, three...Ahhh! A minute seems so long. And, they say time moves quickly. My musing interrupted, “Andrea, let’s talk about what brings you to seek counseling today”. Geez! Let’s see! Cynicism, despair, aimless void, meaningless existence, and a world that seems so removed. “My mother passed away a little over a year ago from Alzheimer’s”. My breathing deepened moving along the back of my throat reverberating out my nostrils, sounding like roaring ocean waves. “The thing is” another heavy breath, “The thing is, I have forgotten really, who I am. What I mean is that I don’t know a life without her”.
Post-Alzheimer's: Hospice gone, family gone, therapist remains ~ Grieving remains!
Chapter Two
November 19th, 2012
Fuck! A snail can move faster than this traffic. I felt my heart racing in my chest as I drove to my mother's assisted living apartment. It was that anxious feeling that always came from phone calls regarding my Mother’s health. Probably a hundred calls throughout my life; paramedics, doctors, drug counselors, family members, nursing home ~ all strangers intruding in our life, thinking they knew best. This call was different. An hour prior, the head nurse at my Mother’s apartment building phoned telling me a kind policeman found Mom wandering the streets. Mom didn’t know who she was or where she lived. He drove her to the nearest facility in the area, finding that it was indeed her home. “I’ll be right there”, I told the nurse, on the phone. I WILL BE RIGHT THERE! I WILL BE RIGHT THERE! Perhaps they will inscribe that on my tombstone as Andrea’s epitaph.
Mom was in the kitchen preparing some sort of salad when I arrived. Apparently there was an early Thanksgiving party in her building that evening. The food she was cutting was moldy and looked like something in a compost heap. I gently asked her to sit down. I could see that she had a distant, glazed, look in her eyes. Through my medical training and years of caring for Mom, I knew she most likely had another Stroke. Her words were slurred, blurring into each other like water on a paint canvas. “Mom, I would like you to come with me on a drive. I think we need to have the doctors run a few tests”. I had put on my best counselor voice, low and reassuring. “Nooooo”! She screamed in a defiant, adolescent way, picking up the TV remote control, the closest weapon in her vicinity, trying to hit me with it. Clearly, the situation needed my patience and resolve to bring her to the hospital. “I have a party tonight" she yelled, "and I want to go! I’m not going anywhere”! So began our conversational posturing, back and forth, like a ping pong match. It was like arguing with a drunk; nonsensical. After much debate, Mom went to the hospital.
Mom endured CT scans, X-rays, testing, all the while reminding me that she needed to be back for the party that evening. A few cousins came to the hospital to lend support to their favorite Aunt. A final test administered, a general Dementia Evaluation. A nurse hovered over my Mom, imposing her large figure, asking “Do you know your name”? I watched Mom stare at the woman with disdain. I quickly surveyed the area for weapons. Good! No TV remotes around. A long quiet pause in the room, as everyone collectively held their breath, and Mom just continued staring. The nurse repeated the question. What a bitch! Give her a moment! I could see Mom’s chest rising up and down as her anxiety rose. Finally, “Of course I know my name, Eileen! Now I need to leave and go to my party”!
Vascular Dementia; Stage 1. 2-3 years left to live. Live? Don’t they mean exist!
Chapter Five
December 21st 2012
Winter morning chill seemed to creep its way into my body that day and I couldn’t get my flannel robe on fast enough. I always threw robes into the dryer to heat them up; Mom loved it! “Mmmm. Warm” she would sigh. One month had passed since the day of the phone call. God! How many phone calls did I make in one month, to doctors, homes, insurance, Medicare, family, and sisters? All wanting to know every single, tiny, little, minutia of detail. Of course, they needed to know. My head hurt! Thank God I was able to stay home with Mom and care for her. As fate would have it my work took an unexpected turn, and I had all my time free; 24-hour care. I am not even certain how my savings lasted during the last year of Mom’s life. Perhaps it was divine intervention, like the story of the fish and loaves of bread that Jesus supplied to masses from only a single fish to start. My entire life really had stopped.
I had been dating a man but I was just too exhausted to find the energy for him. My relationships, education, work ~~ all on hold. I realized I needed to give her 100 percent of my time, which is required of someone suffering from Dementia, and yes, I mean suffering. Life doesn't quite prepare you for this disease or the type of care.
One night, I awoke startled from an eerie feeling, ran downstairs and found her hovering over the gas stove with only the gas on. Of course, I quickly Mom-proofed my home! There were so many scenarios that warranted my concern that month but in short, I needed to find a home for better care. So began the onslaught of medicare officials, mostly nurses that came and ran tests to determine her level of facility needed. Her doctor determined her rapid decline moved her into Alzheimer's affecting her swallowing, balance, and sleep, to say the least. This time was so surreal. No one prepares you for real life, do they!
Alzheimer's; stage 3. Six months left. Assholes! Inept Doctor piece of shit Assholes!
Chapter 8
January 4th, 2013
My Mother’s condition worsened almost hourly. Her speech was hugely impaired. She could only say a few scattered words and even those didn’t make sense. Nothing made sense since that original diagnosis. Each time I went to the doctor they drew an alternate conclusion; clearly they knew NOTHING! Mom and I were inseparable. We watched quite a few movies and cuddled on the couch. Mom’s past seemed to disappear before my eyes and I could only see this sweet woman dying before me. As I looked at her I realized that I had forgotten all the pain and sorrow that my life embodied due to her alcohol and drug use. Yes, not all Alzheimer's patients have white picket fence histories.
There wasn’t one event in my entire life, not even my daughter’s sweet sixteen party that my Mother wasn’t high or inebriated. My sisters and I were cynical and sarcastic telling each other jokes to ease our pain; it was either jokes or drugs, Right?! Mom had an addiction to alcohol and drugs, prescription, or not, since my birth and most likely before. She wasn’t the junky sort that looked disheveled and couldn’t live life but the type of Hollywood Mom that always looked glamorous and maintained a household; well, for a while with nanny and maid at tow.
Evenings, before my Father and her would leave for a night out on the town, she would retreat in the bedroom, beautifying herself, while my Father drank a beer and waited, watching a sports program. Sometimes, he would leave to the corner bar and come back a few minutes before she made her unveiling; I always wondered about his instinctual timing. She would open the bedroom door and come down the stairs twirling before us like a Princess from the Disney movies, only she was a tad bit sexier. I thought her the most beautiful woman in the world. She would kiss me goodbye leaving her beige shade of lipstick on my lips and the scent of her perfume lingering on my pajamas. As they left, I felt the world to be a beautiful magical place. If only my bubble wasn’t burst, awakening me from my sugarplum dreams, six hours later with the sound of vases crashing, Dad yelling, and Mom screaming. It was a cycle that continued until their divorce upon my eleventh birthday.
After that, I went to live with Mom (I still don’t know the reason to that to this day) and the cycle most definitely continued, replacing my Father with men that she dated. Child Services could have used me as their poster child for years, but they never came. Despite the unsafe and unstable environment, Mom also had a tender loving side that when engaged, a person felt they were in the midst of an Angel. Even though Mom may have yelled and fought in relationships, she never once, in my entire life, uttered a negative word to me. She always put all her hopes and dreams in me telling me that I could “be anything” and how “beautiful and talented” I was. She believed I could become anything. Even my failures and mistakes she forgave without hesitation, saying only “Did you learn from them”? It wasn’t until later in my adulthood that I realized she suffered her entire life from losing her father at a young age. If I only knew back then what the future would hold. One day, while Mom and I were driving to yet another doctor visit, for yet another infection, that the doctors had no clue how it started, Mom put her hand on mine. “You take good care of me, you are the most giving person I have ever known. Thank you”. It had been over a month that I even heard Mom utter a cohesive sentence. My eyes welled up with thoughts of losing her. All I could see was my Mom; vulnerable, dying, in need. I couldn’t remember the Eileen that was, the Eileen that existed before this disease. I realized then that we all have our burdens to carry. “Of course I’m here for you. I love you Mom”.
Latter Stage Alzheimer's: Does anyone in this entire aging community know a Goddam thing about Alzheimer's?! Idiots!!!!!
Chapter 10
March 3rd, 2013
I moved Mom into a Memory Care Home, more like a prison ward, and that was a mixed bag of emotion that day. I had relief for her managed care and also the realization that she wouldn’t be coming out alive. I thought that I would have more time for myself to attend school, spend time with my guy, and breathe. The truth? My man and I separated; I took incompletes in school, and my nerves were heightened. I would like to say that I was able to live my life again but the reality was that I spent hours upon hours at the memory care. I bathed Mom, feed her, cleaned her room, made certain that her care was the best possible. I left when she went to sleep. Of course, there were the momentary lapses of decorum as one of the caregivers did something not fitting to my standards. Fire that incompetent! How dare she! Dozens of ER visits occurred during her stay there. Her cognitive functioning was dying including her organ functioning.
Chapter 12
July 10th, 2013
Mom was rushed to Emergency as she couldn’t swallow anything, even water. They feared she would choke herself. All faculties were shutting down as Alzheimer's kills, no, fucking smothers every brain cell. An ER doctor, probably 30 years of age, and too important to even look me in the eye, asked to speak to me. I followed him into a small sparse decorated room, lined with chairs and unused hospital furniture. This was where he chose to chat?! He closed the door. My sisters were conferenced on the phone. “Your Mother is at the End of Life Stage. You should prepare”. He stated as nonchalantly as ordering a cup of cappuccino with extra foam or telling the dry cleaners to use more starch on his shirts; the banality of it. The screams in my head came rushing forward like a fiery blaze burning all coherency, I could hardly hear my voice when I spoke, “her doctor said another year or so. I don’t understand what is happening”. The doctor looked placidly at the phone. Hello! I am right here! Look me in the eye, you coward! His mouth moved and I could see what looked like dialogue on his lips. I could hear nothing. I ran to the trash bin and vomited.
Alzheimer's; End of life. What the fucking hell is happening here! Stop Time!
Chapter 14
July 19th, 2013
There were so many elements to her decline that I could write volumes about, it was a slow, painful letting go of my past. All the memories of my Mom and her alcohol and drug issues seemed faint. I could give a shit about any of that now. My only memories of Mom were loving ones, like how she made each birthday special with her elaborate birthday parties; how we always found fun in every situation; our mutual love of classic movies; her tender soul and sweet spirit; her eternal optimism. My compassion for her extended for her own plight in life and the burdens she carried. Only one remaining emotion ~ Love. Love. Love!
My last encounter with Mom was my kneeling beside her wheelchair, holding her hand. I don’t know why these words came to me “Mom, do you know that God loves you”? My eyes were welling up with tears as she just stared blankly at me. “Do you know I love you”? Still, blank stare. I willed her to nod. Perhaps she did, but I can’t say for certain. “Mom” I looked deeply into her eyes wanting to dive into her soul to touch any remembrance, any trace of her. “Mom, do you know who I am”? Please know me! Please, I pray to God for one more moment with her, Eileen, the Eileen I knew! Tears were flowing gently now.
Mom touched my face, “Andrea”.
7:15pm, later that evening, a phone call.