“Doctor, are you sure?” I questioned.
“We’re never sure, but all indications point
to Alzheimer’s as your mom’s diagnosis. Mary, this disease is not
something your 88 year old dad can take on alone. It is going to be
a family affair.”
And indeed, that is what it has become. This
small family of four will take on years of care giving, financial
concerns, housing options, emotional support and enough decision
making to last a lifetime. My sister, Pat, and I communicate nightly
Now it is just before midnight as I sit in
my dimly lit room listening to my computer go through its bedtime
ritual of pulling dark drapes across each window, closing up for a
well-deserved night of rest. The quiet that envelops the room upon
its final good night is deafening.
I always leave Pat’s email until last. It
has become a daily record of our loss measured ounce by ounce. I
have saved all of our correspondence and during nights when sleep
does not come, I re-read those emails and see how over time our
cumulative loss is not measured in ounces but in pounds. Day by day,
month by month, my sister and I have been participants in mother’s
Mom’s voice plays like a recording through
my mind. “Mary, hurry now, you’ll be late for school. Is your
homework in your book bag? Today is band. Do you have your clarinet?
Remember you have play practice after school. Your sister has an
orthodontist appointment but we should be home before you. I don’t
want you coming home to an empty house. We can’t count on Daddy to
be here any afternoon this week. I am taking him to the airport at
10:00. He has business in Baltimore.”
Yes, Mom was the organizer of our days, the
keeper of time, the maker of our memories and the heart of our home.
Now we have become the organizers of her days, the keeper of her
time, the reservoir for her memories.
Tomorrow I will attend my Alzheimer’s
Support Group meeting. It is the evening I look forward to each
month with both anticipation and dread. What will I hear that will
tug at my heart and bring the tears that lie so close to the
surface? It’s a night to learn from one another, find support and
understanding, share our stories, share our frustration, share our
small triumphs and share our loss. Each night I return home from the
meeting both grateful and fearful…grateful for the burden I have
when compared with others; fearful of what lies ahead. Thoughts will
spin through my mind upon my return home and I know I will awake
from fitful sleep drained of emotion.
When I look at my mother, the flash that
goes through my mind is always the same; a glaring comparison of
what she was and what she has become. She would be humiliated,
saddened, appalled and unbelieving that this ever should happen to
her and thus to us.
Her care has become a family affair. I am
the researcher, a font of medical jargon, the reader of articles,
the follower of drug trials, the dreamer of cures. My sister is the
maker of future plans, preparing for the road ahead that I refuse to
see. But ahhh, Dad is her rock. The one who says he will never leave
her. He is the one who does not yet know how bad his days may
become; how he will be bone tired, weary of his tasks, annoyed with
her very presence and resentful of the loss of his freedom. It is
bound to come,but right now this man who has been her husband for 65
years believes that he can do it all and who are we to break his
And so we go on from day to day watching the
slow but steady pace of this robber of memory we call Alzheimer’s.
How will it end for us? What will tomorrow bring? How fast will
this disease consume her until she is unrecognizable to us as the
person we knew? Whatever lies ahead, I am most grateful that it is
and will remain for us a family affair.