Do not ask me to remember
Don't try to make me understand
Let me rest and know you're with me
Kiss my cheek and hold my hand.
I'm confused beyond your concept
I am sad and sick and lost
All I know is that I need you
To be with me at all cost.
Do not lose your patience with me
Do not scold or curse or cry
I can't help the way I'm acting
I can't be different though I try.
Just remember that I need you
That the best of me is gone
Please don't fail to stand beside me
Love me till my life is gone.
Wednesday, January 22, 2014
Sunday, January 19, 2014
The Question Everyone Asks Families of People with Alzheimer’s
“Does your father still know you?” Sometimes, “How’s your
dad? Does he still know you?” Sometimes, “Does your dad still know your mom?”
I felt awkward every one of the hundreds of times I received
this question. And I wasn’t sure how to answer. It was as though people somehow
thought the pivotal point in Alzheimer’s disease progression was family
recognition. As far as I know, no such pivotal point exists in the commonly
accepted seven stages of the disease. Or maybe people don’t realize a person
with Alzheimer’s might not recognize
you one day and call out your name the next. Or perhaps, the question was
simply a springboard for expressions of sympathy. All I know is that like a
pregnant woman hearing, “Hey, you got a basketball in there?” for the 47th
time, I got tired of the question.
For me, the answer was not yes or no; it was nuanced. And I
suppose the whole recognition decline happens differently for different people.
My dad’s diagnosis came about 10 years before his death, so he had a long time
to lose track of family members. But he never did—in his heart. As he gradually
lost vocabulary, sometime in his final year, he lost our names. And sometimes,
toward the end of his life, on a bad day, my “Hi, Dad! It’s Jane. I came to visit
you,” did not elicit the usual smile. But even on those days, once we had
wheeled away from the nurses’ station and gotten knee-to-knee for our visit, he
reached out for my hand with his big warm hand, and I sensed his contentment.
That’s what I call knowing me.
And when I brought my mother, and she leaned down and kissed
his lips, when she caressed his stubbly head and held his hand, he fixed loving
eyes on her like a soldier coming home from the war. That’s what I call
recognizing my mother. Even on his deathbed when he was barely breathing, he
wanted to hold Mom’s hand. When family was with Dad, his sense of “This is
right; this is how it’s supposed to be, and I am happy” filled whatever room we
were in. Though he didn’t know our names, and sometimes not even our faces, his
recognition of his family’s love was palpable.
I don’t know if all people whose loved ones have Alzheimer’s
can be confident of a heart connection unto death. As long as I live, I will
thank God that our family did receive this gift. Speaking of gifts, another
reason the “Does he know you?” question is awkward to receive is that it presupposes
that visits will become less gratifying, perhaps even useless. Indeed,
different family members might have different levels of sadness and avoidance
once the paradigm shifts to unfamiliar one-sided conversations with Dad. This
is, however, when family’s visits become precious sacrificial gifts. It’s not
about us; it’s about Dad. “Does he know you?” implies dread of the moment when
giving to Dad becomes its purest and most joyful.
Perhaps when people asked me, “Does he know you?” I assumed
they wanted to know about names and faces and dread, so I didn’t know how to
explain. Perhaps I should simply have answered, “Yes.”
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