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COLUMNISTS


INDIANA MEMORY CARE FACILITIES WOULDN'T TAKE MY DAD. HE SUFFERED AND DIED OF
ALZHEIMER’S.

Darcy Metcalfe
Indianapolis Star



What it is like to die of Alzheimer’s in America?

Without a doubt, it is nothing as it is portrayed on NBC’s hit series This is
Us. At the end of this series, the character Rebecca dies from Alzheimer’s and
falls peacefully asleep, snuggly tucked in her warm bed at home, surrounded by
family and 24-hour skilled nursing care.

Throughout the six seasons of This is Us, I simultaneously witnessed my father’s
slow dying from Alzheimer’s in a reality that was worlds away from Rebecca’s. By
the end of his life, his bruised, broken, and emaciated body lay helpless on a
sad excuse of a mattress afforded by Medicaid, in a barren room with peeling
paint in a dilapidated, decaying and severely understaffed behavioral health
facility in Indiana.



My father was one of 6.9 million people with Alzheimer’s in the U.S. New studies
suggest that 27 to 52% of this group will eventually experience aggressive
behaviors as symptoms of the disease. If you or a loved one eventually fall into
this range and receive Medicaid, I write hoping to prepare you for what is to
come.

I was told my father would find good minute-to-minute care in memory care
facilities that are well-staffed and trained for all stages of Alzheimer’s.
However, I learned this level of care is afforded only in Rebecca’s world — a
world of endless financial resources.



Soon after my father drained his personal resources in memory care and enrolled
in Medicaid, the facility he resided in began sending him on frequent trips to
state-funded psychiatric facilities. On his fourth and final trip to a
psychiatric facility, memory care informed me they no longer could care for him
due to his sundowners and aggression — symptoms of the disease — and offered no
help in finding him a new care option.



Over the next two months, my father was stuck in a psychiatric facility in
Toledo, Ohio, as I called over 40 memory care facilities in his home state of
Indiana to find him the care he needed. Each facility I called refused to accept
a patient who had aggression from Alzheimer’s and was a “Medi-bed.”



At the end of his life, he was released from psyche to a behavioral health
facility in Indiana that was not trained or equipped to care for Alzheimer’s
patients. He died with several broken bones and brain bleeding because
behavioral health nurses refused to sedate him to keep him from hurting himself
with repeated falls.

The nurse told me this type of sedation was considered “chemical restraint” and
it was outlawed in the state of Indiana. Legally, this is also not true, as it
is allowed when the patient is a harm to himself or others.



I watched my father slowly suffer and dissipate into a bruised and battered
skeleton, physically alert to all his many tortures. And as my dad lay dying, I
held his head in my hands as he breathed his last gasp and felt a heaviness
lifted, knowing this inhumane existence was no longer his reality.

Every year in the U.S., millions of people with advanced Alzheimer’s have
similar experiences. Millions more will continue to fall through the cracks of
our health “care” systems if statutes and Medicaid allowances are not changed
and health professionals and facilities continue to be unprepared for every
stage of Alzheimer’s disease.

Darcy Metcalfe is a religious studies professor at the University of Findlay.
She specializes in bioethics, end-of-life ethics, and medical racism in the U.S.


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