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Once a Caregiver, Always a Caregiver
for the Rest of Your Life
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.