Table Of ContentMommy?
J P A R D
AGGED IECES LONG THE OAD TO EMENTIA
by Dr. Brenda Triplett
Contents
Introduction
Drizzle
A Letter to Myself
Home Attendant Blues
MIA: A Plea to My Sisters . . .
The Lost Dentures
Tallulah Sex Diva
Caregiver and Martyr are not Synonymous!
Excuses
The All Powerful Pocketbook
Honestly …
Rain
The Transition
The Night Before
The Morning Of
The Moment Of
The Indignity of Incontinence
The Psychotropic Drug War
The Apology Letter
Bathroom Dilemma
Broken and Twisted
Estelle
The Windows to the Soul: I Do Eyes
Old Folks Just Love Children – BULL!
What’s the Big Deal About Death and Dying?
SCREW BINGO!
The Closing Doors
Sixth Sense
It’s My Turn
Spiced Ham, Glazed Donuts, and Bosco
Circus
Infamous ‘Bed Hold’ Policy
The Revolving Door of Re-Hospitalization
Walter
Sarita: The Hoist from Hell
The Change in Dorothy
Another Round of the Psych Drug Battle
The Tempest
The Disease
Psychotropic Drug Threat - I’m Losing the War
Mad as Hell
Treatment in Pieces
The Perils of Dehydration
Lucid, Sobering, Breakthrough Moment
Hospital Psych Ward: Your Worst Nightmare
Do not Underestimate your Own Mortality
Release the Pain; Remove the Power
The Moral Dilemma
Mommy, Are You Home?
DNR: (DO NOT RESURRECT)
Mom’s Gift: The Bridge
Principle of ‘Substituted Judgment’
The Rainbow
I Signed
The Final Port–Of-Call
The Rainbow
Lessons Learned
Copyright
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 can’t 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 isn’t right with
my aging mother. I have subconsciously become
quite adept at making excuses or explaining as
coincidence, my mom’s 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 mom’s 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. It’s 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 mother’s 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 mother’s 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 mother’s 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. Can’t forget Bernadette, who would
show up for work with clothing and stage makeup fit for a hooker on crack. You
can’t 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.
Do your homework and shop around before hiring home attendants. Seek
agencies that offer meaningful professional development for attendants, have
low turnover rates, and proper and sufficient supervision. I didn’t know it at that
time (managed health care programs conveniently kept this little secret to
themselves), but if your parent qualifies for Medicaid, a home attendant of your
choice could be paid to provide care to your loved one. In New York, the
Description:Overview: Age gracefully “Miss Hilda” did not.
