What is your personal experience with Alzheimer’s Disease? Part 1

Marya’s Personal Experience with Alzheimer’s Disease

The following is how I addressed my fellow walkers at the 2012 Walk to End Alzheimer’s Disease:

As owner of Power of the Heart, as a Star-C consultant, and as a support group facilitator, I have had the wonderful opportunity to meet and work with many you in my professional capacities.

Today, like Dr. Villenueva said, I’ll be sharing a bit of my personal story with you. Many of you have not heard it. I’ll start from last summer when I was sitting in a restaurant in San Francisco with my sister and brother in law. My sister and brother-in-law confronted me about my denial in regards to my dad’s cognitive decline. My sister said “I know you’re the expert, but we just spent a week with mom and dad, and there is seriously something wrong with dad.” My brother-in-law nodded with his eyebrows raised and his arms crossed, that uncomfortable look like “this isn’t going to be good, ” with sideways glances to my sister, like “careful now”.  I responded “I know he has some dementia, but I don’t think it’s Alzheimer’s. He is 82 after all.”

I did think about the conversation though, and began to realize how difficult it was for me to let go of my image of my dad, a man I admire and love very much, and open my eyes to see him as he now was. As a professional, I often help people frame their experience as healthy, by teaching them the Kubler-Ross model which outlines the stages of loss. I realized that maybe I needed the denial for now, as I was so terribly saddened at the thought of my dad being afflicted with Alzheimer’s disease or a related illness.  It was almost as if I had chosen to wrap myself in a blanket of denial to protect myself form the forces of nature over which I had no control. I didn’t get to stay wrapped up very long, however.

A couple of months later, my dad called me and said that he had something serious he wanted to talk to me about next time I was in town. When I arrived he told me that he had almost started a kitchen fire. What he described sounded to me like difficulties with sequencing. He told me that he had taken the toaster waffle out of the freezer and had placed it on a paper plate. Then he looked at it sitting on the paper plate and couldn’t figure out what to do next. So he put the paper plate and the waffle into the toaster.

I recognized that difficulties with sequencing is something that many people with Alzheimer’s Disease struggle with, but I clung desperately to my denial by telling myself “It can’t be Alzheimer’s Disease because he has such good insight, the ability to see himself and his actions.

Two weeks later, he called me sobbing. How soon could I come up? He had just driven his car through the 2 story garage. I truly could not believe what I saw when I arrived. The garage was flat, with parts of the car sticking out. The only thing that kept the car from going all the way through the garage and over the cliff behind was a pile of wood in the corner. To look at the rubble, I couldn’t believe that my parents were alive.  I was now ready to let go of my denial, and so were my parents.

That was October, and we began the process of connecting my parents with professionals in their area. I spend a whole week in Portland, helping them find resources, and I pretty much cried all week. Thank goodness my big rock of a husband had come with me.

February 6 of this year my dad was diagnosed with Alzheimer’s disease. That same day, he started his early memory loss classes with the Alzheimer’s Association. He is now also an active participant in the Memories in the Making Art classes they provide. He had a strong acting background and uses this strength to publically share his experience of Alzheimer’s Disease as a way to give back for all that he has received. He is very grateful for all of the support he has gotten and wants to be a voice so that others will have access to the services and support that they need. I admire my father very much and stand by his side as he tells his story.

My dad has found his way to acceptance and hope.

I’ll be honest with you. I’m still bouncing around in bargaining and depression.

I see so many faces of people here that I hold dear to my heart. Many of you have welcomed me into your lives as a professional partner in your journey with your loved one with dementia. Because of that I am a richer person and a better caregiver myself.

As I walk with all of you today, I want you to know how truly honored I am to be among you. You inspire me. Thank you for being here today, as we walk together to end Alzheimer’s disease.