Thirty years ago there were very little supports,
services or options available for families caring for their
older loved ones in the United States.
Since that time, our nation has made great strides in
helping caregivers provide the assistance they need to keep
their family members living at home in the community among
their families and friends. A groundswell of support for
addressing the challenges that caregivers experience on a
daily basis has resulted in many positive changes, including
the Family and Medical Leave Act, the National Family
Caregiver Support Program, and the long term care provisions
included in the 2006 Amendments to the Older Americans Act
that emphasize the delivery of home and community-based
services to older persons in lieu of costly
institutionalization.
The story that follows was written by Sr. Marie Clark, IHM who was Assistant Secretary for
Aging Josefina’s Carbonell’s teacher and principal in high
school in Miami.
It vividly describes the painful yet poignant journey
her family endured caring for their mother.
On Thursday, June 20, 1974 at noon, my mother suffered a
severe stroke quite suddenly while working at Wanamaker’s
Department Store in
Philadelphia. My mother had never
been sick before, so this was a shock to my father and two
brothers. She
was only 71 and quite active and well until that day. It was a blessing that I was at home with my father
at the time that the Department Store nurse called the house
and informed us that my mother was taken to Jefferson Hospital
in Philadelphia.
Later that afternoon, my father asked the Doctors at
Jefferson if my mother could be moved to the Memorial Hospital
as a convenience for the family and friends. I was then able
to stay at our family home with my father. On Saturday, my
two brothers came from Long Island and
Maryland
with their families for the weekend. They all left on Sunday
after having visited ICU, watching my Mother who was in a
coma. Unfortunately, the following Monday morning, before I
went to the hospital to visit my mother, I found my father
dead in bed. He had a massive heart attack two hours before
I found him. I am sure that it was the shock of my mother’s
condition that brought this on.
These were very tragic and trying times for my two brothers
and me.
Neither my mother or father had ever been sick before, so we
were all devastated. My mother’s stroke was pronounced to be
severe. She was unable to speak, and both her right arm and
right leg were paralyzed. She remained in the
Roxborough
Hospital until September of 1974 and
then she was transferred to
Einstein Medical Center
for continued therapy until November 1, 1974.
My two brothers and I decided that it would be best to bring
her to her own home and with assistance that was
accomplished. I, at that time, was involved in
Administration in a large Catholic Girls’ High School, and I
believed that it would be best for me to request a Leave of
Absence from my Superiors in the IHM Congregation. This was
granted,
and from 1974 to 1980 when my mother died I remained in our
family home in Roxborough and had to learn many things about
home care and learn quickly. Many neighbors and friends came to my rescue and my
mother’s doctor was most helpful with advice and support and
home visits.
My mother needed therapy, so I enrolled her in a program in
a hospital nearby where she was given Physical, Occupational
and Speech Therapy three times a week. Fortunately, most of
these Therapy expenses were covered by her Medical Insurance
(Medicare and Blue Cross and Blue Shield). She had worked at
Wanamaker’s Department Store for 24 years and had paid into
Medical Insurance. I observed all these therapies and
continued them at home four days a week. From 1974 to 1978, my mother improved very well, and
at the end of the four years she was speaking slowly but
with great difficulty and able to walk with a cane and use
her right arm a bit.
However, in October of 1978, I found her unconscious one
morning in bed and the doctor stated that she had had
another stroke. After hospitalization for about a month, she
was released in a totally paralyzed state with a feeding
tube and unable to use either arm or leg. She became a bed
patient for the next two years. Again, I sought advice from medical books, doctors
and nurses and soon learned how to take care of a bed
patient, use the feeding tube every 6 hours and change the
catheter when necessary. Fortunately, many friends in the neighborhood came to
my assistance especially when I had to get my mother out of
bed with the Hoyer Lift. She needed a hospital bed and also a wheelchair so
that her lungs would continue to function properly. This was a daily routine each afternoon with the
Hoyer Lift and wheelchair. Every 6 hours I sat beside her bed, and with a
standard pole, allowed a nutritional supplement (Ensure) to
drip into her feeding tube. This included a 2 a.m. feeding so I became an around-
the- clock nurse.
God and the neighbors were my daily support.
All throughout these six years of suffering, my mother was
mentally alert, and she and I communicated through little
eye signals that I taught her in order to respond to my
questions regarding her comfort, her favorite TV shows or
her feelings. My mother’s MD (Dr. Janet Hampton) who lived
nearby was a tremendous support because she made house calls
when necessary, and was always available by phone.
If there had been Hospice or some other Home Care
Organization at that time, I would have applied for those
services, but in the 1970's this
was not in existence. We could not afford Private Nursing
Care, and I
refused to put her into a Nursing Home. I could not subject
my mother to such deplorable conditions as long as I was
alive and able to take care of her. I am grateful that I was able to do what was
necessary for her comfort and keep her in the familiar
environs of her own home.
My mother passed away in the
Roxborough
Hospital on May 22, 1980 after severe
de-hydration and a stomach virus that the doctors were
unable to isolate or treat. She was only in the hospital for
three days and I was
sorry that she could not die at home because that was her
wish. My
two brothers and I were at her bedside when she breathed her
last breath. I was very grateful that I had been able to
care for her during those very difficult years when she
suffered so intensely.
Written on June 12, 2008 by Sr. Marie Clark, IHM
Home Care For Mrs.
Leona Clark from 1974 to 1980.
(Given by her daughter, Sr. Marie Clark, IHM)
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