Triplett - Mommy Jagged Pieces Along the Road to Dementia

Mommy?

Jagged Pieces Along the Road to Dementia

by Dr. Brenda Triplett

Contents

My memoir is dedicated to my daughter Lauren who walked every step of this journey with me, and to my husband Larry who carried me through the storm. It is also dedicated to all the caregivers whose paths I have crossed; as comrades at war, we have cried together, prayed together, and fought a brave battle. At the very least, we have tried our very best. We are human. We are forever blessed and humbled to have taken the journey.

A special thank you to Dr. Ajaanu, M.D., for his compassion of the plight of the elderly and for recognizing the power of God over all else.

I also must acknowledge the nurses and support staff of Unit G2 at South Nassau Community Hospital and two angels named Melody and Anne Marie for caring for my mother as if she were their own. You will forever be within the folds of my heart.

Introduction

I am a caregiver. I am you. I am here to validate your journey. Enraged at my siblings absence and apathy, I began writing as a means of preserving my sanity and allowing myself the chance to process all that I was experiencing, yet so unprepared to handle . I am not a clinician recounting a sterilized rendition of the caregiving experience. There are already hundreds of those books on the shelves. My accounts are firsthand, real, and raw. This memoir is to be used as a play-book for caregivers.

My understanding of the aging process was shaped by firsthand, front row, orchestra seat observations of the unraveling of the independent, quick witted, hysterically funny, proud woman who was my mother. Age gracefully she did not! Miss Hilda fought like hell, dug in her heels, kicked, stomped, and cussed all the way! Not that she was ever a shrinking violet, but at almost ninety-two years of age and a victim of severe dementia, all of her personality traits were magnified. Old age had made an honest woman of my mother literally. I never imagined she knew so many obscene expletives, racial/ cultural slurs, and sexual slang! I became a mommy again to a naughty, stubborn toddler, sometimes willful, precocious teenager, sometimes immature adult, vacillating between developmental stages and psychological states of mind. At times she was quite lucid, and other times either manically depressed or maniacal.

The book is divided into four distinct stages along my caregiver journey: Drizzle, Rain, Tempest, and Rainbow. Within each stage is a collection of authentic letters, diary entries, narratives, and survival essentials (written in both present and past tense) that intimately paint a canvas of a very human caregiver juggling a parent with dementia as well as her own mortality.

Drizzle

I cant really put my finger on when it all began. As I dodge in and out of raindrops I know in my heart that something just isnt right with my aging mother. I have subconsciously become quite adept at making excuses or explaining as coincidence, my moms erratic and at times bizarre behaviors. The urine-soaked panties tucked away in a boot, the fading presence of my sisters, and my own discomfort and uneasiness. It is the beginning of moms journey from mental health to dementia, and I as her very human caregiver.

A Letter to Myself

First, you need to know that you are a good daughter. Few aging parents gracefully slip into dementia with no collateral damage to those who love them. Its that damn inner conflict and guilt that drives you to the point at which you feel no longer able to carry the weight. Your love for your mother is beyond reproach. You have indeed become a master boxer: sometimes fighting real, tangible opponents. Those bouts you easily win. Others require you to shadowbox challenging intangibles such as spiritual fatigue, hurt, anger, guilt, self-pity, and depression. Although your feet are dancing, your head is bobbing, and your chin is tucked, you still get sucker-punched squarely in the jaw. Somehow you have always managed to rise, for you are a true champion, an unconditional daughter. Whether your mom knows it or not, you are not only her advocate and caregiver - you are her angel.

May God re-inspire you to defend your belt. If that is no longer a possibility, I pray that He will grant you the wisdom to recognize it and the compassion and courage to forgive: especially yourself.

Home Attendant Blues

Let me preface by stating that there are thousands of caring, compassionate, dependable, qualified home attendants. Truth be told, I never would have survived without many of them; they were a true lifeline for both me and my mother. As in any profession, there are shining stars, honorable mentions, and total nightmares. In this $1.3 billion business, there is rampant improper certification by agencies and, appallingly, no state central registry for home health attendants.

The dilemma was that I absolutely had to go to work, yet was forced to leave strangers with my most precious possessions: my mom and my home. My house became Fort Knox, with locks on every bedroom and closet door. My husband and I have always found comfort in our privacy and we resented our home becoming a revolving door for strangers not just people we did not know, but people of different values, morals, experiences, and beliefs. Most frightening was their lack of understanding of the aging process and the ramifications of dementia.

Focusing at work was extremely difficult not knowing what was going on in my home. Trusting or even liking some of the home attendants was a challenge. On top of it all, my mother resented like hell, strangers coming into her space to babysit, bathe her naked body and, expect her to eat the food prepared by women of different cultures and customs. All of my mothers prejudices and stereotypes were unleashed and unfiltered which further complicated the attendant/ client relationship. She loathed 99% of them and made sure each of them knew it. The racial slurs and expletives that spewed from my mothers lips were vulgar, insulting, and culturally insensitive. I knew that I could not be there to protect her whenever she would so willingly express herself and I knew that the home attendants were not astute enough to realize that her ranting was a condition of her illness and not to be taken personally.

I remember thinking to myself way back when I was caring for my mom on my own, how much easier my life would be if I only had a home attendant. I fought hard to get my mother classified with a high enough score to qualify for a home attendant through her health care program. I just knew that a home attendant was the one solution to all of my problems. Hah!

Just think about it; the average hourly wage for home attendants is a bit above the minimum with few to no benefits. The turnover rate is so high in many agencies that at one point a new attendant was appearing at my door weekly. I never knew who or what to expect when my doorbell rang. I must have gone through twenty different home attendants within the first year until I thought I found the right fit for my mother, only to have her leave three months later to return to her country of origin. Some of the more colorful home attendants included Hyacinth who literally sat frozen for four hours refusing to utter a single, solitary word to my mother; Beth who decided that she would provide my mother with her own pills because Trust me, they work beautifully; Shirley who decided to hold my mothers social security check for safe keeping; Renee who would sleep (and even snore and dribble) the entire time explaining that she was simply resting her eyes. Then there was Dorothy who arrived one morning at 8:30 a.m. to start the 6:30 a.m. shift with a blackened eye and a swollen bloody lip, having been beaten by her boyfriend that very morning. She assured me not to worry and that she would protect and care for my mom while I was at work. I will never forget Marcie, who thinking I had already left for work, helped herself to the food in my fridge with her fingers and washed it down with gulps directly from the juice container. Cant forget Bernadette, who would show up for work with clothing and stage makeup fit for a hooker on crack. You cant make this stuff up! On the other hand, I lovingly remember Pam, Marlene, Roz and a host of other attendants who I thanked God for every morning. They were good, hard working, compassionate women who were empathetic and motivated by their humanity and love for even the worst of clients. Although frequently shoved to the ledge by my mother, they never pushed back.