Alzheimer's Daughter

The Story

Alzheimer’s Daughter introduces the reader to my healthy parents, Ed and Ibby, years before their diagnosis, then recounts painful details as our roles reversed and I became my parents’ parent.

Their disease started as translucent, confused thoughts and ended in a locked memory care unit after a near decade of descent into the opaque world of Alzheimer's.

I began writing Alzheimer’s Daughter one week after my mother's death––when I was stunned, realizing Dad had no memory of her or their 66-year marriage.

I write to pay tribute to the undying spirit at Ed and Ibby's core, and with the hope that the story of their parallel decline might be helpful to others.

Chapter 20- Closing Thoughts

Dear Mom and Dad,
I’ve 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.
During 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.
In 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.
I 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.’
When 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.
If 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.
“Love never ends”
1st Corinthians 13:8
* * *


Unknown said...

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.

Anonymous said...

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 !

Jean Lee said...


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