Alzheimer’s...

My mom was diagnosed at 70 with Alzheimer’s Disease. I was a nurse, my mom was a nurse, her father a surgeon... medicine ran in our blood. So did the disease. Mom remembers her Aunt Ruth having Alzheimer’s. Mom was tested and found to have the Alzheimer’s gene that demonstrates an increased probability of the diagnosis. This was after I found her. I found her at the fairgrounds. She and my dad had taken some of their grandchildren to the fair and she had returned to her car to gather her rain coat. My husband and I were arriving later and found her wandering the large lot. I rolled down my window and asked what she was doing.

In my entire life I will never forget the look of fear in her eyes. She said, "well I came out to get something from the car but now I can’t remember what... and now I can’t remember what we drove or where we parked."

We drove the lot and saw her van, in the seat her red raincoat.

“Mom, were you perhaps looking for your raincoat?”

Maybe... we walked into the fairgrounds with her calling my dad’s cell to locate him. I said nothing that day. Later in the week I queried my brothers and sister... was this unusual? Had anyone else noticed anything. The consensus was yes. We had all noticed she was off. We made the decision we would approach dad, my brother, the eldest son made the initial conversation. Dad and mom discussed our concerns and they made an appointment with her local doc. He referred them to the neurologist in town who did a battery of test.

We heard the answer... along with statements like there is no definitive diagnosis until autopsy... Alzheimer’s is a disease of ruling out what isn’t... etc etc etc. I got the call one night. They were together on speaker phone. Being a nurse I knew. I just very simply knew. Deep in my sorrow filled soul I knew. My heart shattered. Their words were almost too hard to hear.

It’s pretty positive—they suspect it’s Alzheimer’s... my first question was "what are you going to do?"

Mom said... "God set us on this journey together in life and we will walk this road as we always have, together with God."

They immediately went to Banner Alzheimer’s in Arizona. Test and test and tests. I was a clinical trials nurse and was hot to have them look into clinical trials. She was accepted onto one testing a new drug that would slow progression. We later found out she had been randomized to the placebo. But dad had started his own war on her disease. They had so dull, word puzzles, crossword puzzles, picture puzzles... anything that made her exercise her critical thinking pathways. It was her saving grace. She progressed very slowly, compensating so well few ever knew (outside our family) what a struggle she was battling at internally.

She had been an advocate for children since her early days at Boston’s Children Hospital. Her works had become the learning tools of thousands of students. She guided, role modeled, led the community into the light regarding child abuse and neglect and punishment VS discipline. She has a Center for Families named for her. I watched her slowly begin to turn down commitments. Slowly begin to fade from the spotlight. For me though, her light never dimmed. She was my mom first, last and always.

She carried herself with such dignity, but her slips became more and more apparent as time went on. At first hardly noticeable but more recently hard to tell if she even is still aware of her progress within her disease process. I kept my daughter face on and refused to allow the nurse in. I believed if I hoped and willed it to disappear my momma would be herself again. I put up, all refusing to let the knowledge of the changes in. Refusing to accept. Refusing to be honest with the very internal heart and would of my being. It didn’t work.