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he man I live with is not the man I fell in love with and
married.
He has slowly been robbed of something we all take for
granted: the ability to navigate the mundane activities of daily
livingbathing, shaving, dressing, feeding, and using the
bathroom. His inner clock is confused and cant be reset. His
eyes are vacant and unawareas if an internal window shade
veils our access.
Before I grasped what was happening, I was hurt and annoyed by my husbands behavior. Those feelings dissolved
into unconditional empathy once I understood the cruelty of
his diagnosis: early-onset Alzheimers disease. He was fifty-
eight.
At first, I ran interference and fought for him because it was
the right thing to do. He was slipping out of controlconfused,
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down building blocks for the future. I need to make some sense
of my journey through this storm.
My bookshelf is lined with tomes on dementia care, yet the
page I need always seems to be missing. Each brain unravels
in its own quirky and idiosyncratic way. I have learned firsthand that there is no single solution to taking care of someone
with dementia.
Many times, personal stories involving Alzheimers gloss
over the unseemly details of care. They are written as love stories
of unquestioned devotion or living memorials to honor someone
during better times. Why not? As spouses and caregivers, we
deserve to do whatever works for us. It is our version of pain
management. But I never wanted to embellish or soften the edges
around the truth. It does not do justice to the cruelty of the disease. I offer you my own experiences from a position of hard-
won humility. I hope you will thread them with your own.
When I say I have cared full-time for Harvey in our home
all these years, many ask me why. Even now, there is always
an initial reflex that makes me want to say, Do I really need
to explain myself after all Ive been through?
I realize that the question is a natural one, a human one, a
social one. The interlocutors are not judging me, but rather
vicariously checking themselves. In questioning me, they are
testing their own capacity to deal with a diagnosis of Alzheimers disease and the potential impact it might have on their
relationship with a partner or parent.
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Those of us who are fifty years and older must stop viewing
ourselves as ageless. All of us should track our cognitive
health, just as we do cholesterol levels or blood pressure. We
need to overcome fear and stop cowering in the shadows of
stigma.
I write for all of us who are still well, but have seen the
devastation of Alzheimers disease firsthand. The emergency
is with us and in us.
I write to clinicians, reluctant to diagnose because they
cant effectively treat. Please know the inadvertent trauma you
inflict on families left confused, hurt, and helpless. Then time
runs out on the ultimate conversation with our loved ones
about end-of-life wishes. Their minds are erased. It is simply
too late.
I write to reach the generation of our adult sons and daughters, who struggle to understand our lives as we care for a
loved one with Alzheimers. They stand on the precipice and
wrestle with issues and decisions similar to the ones we have
faced. They deserve better options and not the bankrupting
burden of our care. This is not the legacy we want for our
children or the way anyone wishes to be remembered.
I write for my grandchildren because, no matter how hard
I tried, Alzheimers blanketed my home with sadness. I know
that loving each of them unconditionally has been my salvation. One day, I hope they read these words and appreciate my
choices.
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