agonized about writing this book. My goal was to preserve your love story––a
love that remained strong through debilitating disease. In the process, I’ve
had to speak honestly about the less-than-pretty details of Alzheimer’s. It
hurts me to think I’m tattling to the world about the disease that was too
painful for you to acknowledge.
its ravages––during times of conflict, you both drew inward, to protect each
other from any assault. Mom, you fought to protect the man you’d loved your entire
adult life––to defend his independence and dignity. Dad, you protected Mom––the
girl you first kissed in the tunnel of love––until her last breath.
the midst of those difficult times, I often envisioned Alzheimer’s as a silent
monster looming behind you both, inching closer and closer, threatening to
overtake you. Annette and I ran frantically ahead––pulling you, or behind, pushing
you––always trying to shield you from the invisible beast. At times you thought
your own daughters were the enemy––unable to understand Annette and I were your
allies, and our hearts ached from the decisions we had to make to keep you
safe. Mom and Dad, you saw only each other.
choose to remember you both as you were at your core––the people you were
before Alzheimer’s tried to rob your of yourselves––people of positive attitude
and faith. Nearly every day, I drive by our church and the cemetery where you
lay buried. Attending church feels like coming home to visit you. I sit in
pews––still warm from your bodies. Dad, I see your arm around Mom. Mom, your
head leans into the crook of Dad’s neck. Mom, you taught me to see God through
nature, and made sure I counted my blessings large and small. Dad, you taught
me to find joy in simple things––in honest, hard work. The two of you shared a
humble life, a happy life––you didn’t need more.
Annette and I have often said, “We will remember your lessons as long as we have
memory.” Just in case I forget, these two sayings are written on my dining room
walls surrounding your old dining table, whispering from you to me: ‘Live with
an attitude of gratitude,’ and ‘Every ordinary day is extraordinary.’
I think about the end of your lives, I’m fearful. I don’t want my life to end
without lucidity. But, you didn’t get to choose, did you? I won’t either.
I end up with Alzheimer’s and my children have to make a decision for me to
live in a place like the locked facility where your lives ended, whom will I
be? Will I be the person who’s moaning––the person who’s swearing? Will I be
the person who loves everyone’s jewelry and takes it? Will I be the person who
wanders and picks things up, but says I’m not stealing? Will I be the person
who eats other people’s food––the person who paces? Or, will I be like
you––retaining loveliness in the midst of the ugliness of Alzheimer’s
disease––making a rose garden from a load of manure?
Annette and I are still trying to find peace from the pain and guilt we experienced by
taking control of your lives. Can my apologies––spilled out through these
written words––reach you in heaven? We know our actions will be judged by our
Maker at our life’s end. I pray you both run to embrace us when it’s our time
to join you again.
Your blog helped me so much in dealing with my own Mothers journey and her passing.I cared for my Mom for seven years in my own home,she went to heaven from her own bed at home.Many times I wondered..did I do enough or did I do the right things for her...but I reaize now we all think the same thing when it comes to our parents.Thank you for sharing your story...i am sure it will help so many dealing with the same fears and emotions. Take care.
Thank you so very much !
It was meant to be that I happened upon your story.
Both of my parents received the diagnosis of Alzheimer's on the same day. That was two years ago, and just recently my sister and I had to move them to assisted living.
Their story is so similar to your parents.
Everyday is a challenge and they are always on my mind.
So many unknowns , so much uncertainty as we try to do right by them, and ease their path through this disease. As difficult as it is , I am grateful they are not cognizant of the other's decline.
It was a great comfort to me to read your words . You so honour your parents by sharing their story . Thank you !
Thank you for your kind words. My heart aches and I feel the familiar churning in my stomach as I read your story. I often felt the pain of slowly taking everything away from the people who had given me everything.
I agree, it is a mixed blessing when a husband and wife deteriorate together. My parents entered their own happy little world. Neither had to wring their hands and agonize over the other. That worry was left for my sister and me. Yet, the unfailing support from my sister and the process of joint decision-making formed a sister-bond that will never be broken.
I hope you can continue to find silver linings as you care for your parents. Please stay in touch.
Jean L. Lee
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