The year was 1981,
the month was December, and little did I know that I was about to embark
on one of the most emotionally charged periods of my life. I was about
to become a caregiver, a role that I would play for the next 18 years, a
role I didn’t know existed beyond my own child-rearing years.
Up to that point in
my life, I had been blessed with healthy children and healthy
parents—parents who had helped me drive kids to school, take them to the
doctor, or get from the grocery store the much needed gallon of milk for
breakfast the next morning.
I was happy and
content that morning in December until the news that my father was in
the hospital reached me. Like the majority of caregivers, once the
diagnosis of renal failure was given and dialysis treatment was begun, I
felt the crisis was over. I thought that in a couple of days things
would get back to normal, and I could get back to my routine of asking
“Papi” or Mami” to baby-sit for me.
Like the majority of
caregivers, I didn’t know that, that day, that moment was the “best”
moment my father and my mother would have for the rest of their lives.
It is not easy to recall all the experiences I have gone through as a
caregiver, first for my father, and later for my mother. While my
father’s physical condition was his main impediment, my mother, on the
other hand, quietly and slowly began to lose her mind.
It is amazing how
the challenges of taking care of someone with physical impediments is
totally different from the challenges of taking care of someone with
Alzheimer’s disease. From my perspective, hers was the more devastating
of the two because I began to question my own reality. The other person
is presenting a different reality from yours, and you don’t know how to
react—whether to be angry, sad, confused or afraid. The role reversal
between my parents and me, and even between my children and my parents,
began to happen very quickly. At the beginning I didn’t want to take
control of their lives, but I had no choice. The difficulty was taking
control at the right time, for the right reasons.
I thought my biggest
challenge was going to be transportation to and from the dialysis
center, and that the “rest” would be done as usual. I truly didn’t know
what the “rest” was. I discovered that the “rest” included everything,
from bathing, to dressing, to feeding, to moving, to toileting—and not
just one time a day, but several times a day.
There were several
things that surprised me through this experience: No agency was able to
handle everything my parents needed, no directory that I could buy or
obtain to find services, no public knowledge and support for what I was
doing, no recognition from my employer, no place that I could go to just
“ventilate” my emotions.
The insensitivity of
the “system,” the indifference of the processor, the superiority of some
entities, and the helplessness experienced while caregiving were all
emotions I felt as a caregiver. Some of the most difficult moments for
me included my father’s inability to speak at the end of his life while
having complete awareness of his environment, contrasted with my
mother’s being unaware of her environment. The fact that she died alone
still hurts me.
People talk about
compassion, but when it is time for them to exhibit that characteristic,
few know how to do it. And caregivers need compassionate people around
them. Being a caregiver for my parents has taught me never to take for
granted the health that I have, the mobility I possess and the agility
of my mind. It has taught me to live my life everyday to its fullest
because retirement may, or may not, be there for me as I have planned
it. Being a caregiver has convinced me of the value of prevention and
early medical intervention. It has given me a different outlook on
life—more patience, more compassion, more respect for our elders and
more courage to fight for other caregivers like myself.
I was technically a
caregiver for 18 years, but I will always feel and think as a caregiver
for the rest of my life.
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