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One of the worst days of my life was five years ago when I was in crisis: my mother was in the confused and angry stages of Alzheimer’s, and my father was dying from prostate cancer.
She didn’t understand he was dying. And she was getting in the way.
My sister and I called the one resource we had relied on through the varying stages of the disease: the Alzheimer’s Association. I called the director’s cell phone after hours and she gave us the most unexpected advice: “Move your mother out. Let your father die in peace.” She said that as soon as your mother is settled in a facility equipped to care for Alzheimer’s patients, and your father knows that she is taken care of, he can let go.
She was right. We moved my mom, and my dad died the very next day.
The memories of that day are still painful: We told my mother to kiss my dad goodbye, and we were going out to lunch at a new “restaurant.” It was the dining hall of a facility for Alzheimer’s patients.
I knew my mother would never see my father again. Her powerful disease was too much for his weak soul.
I have pushed these agonizing memories far, far away. Even now, as I tell my story to explain why raising money for Alzheimer’s research is so important, my eyes are swelling with tears. We needed help in a crisis. The Alzheimer’s experts helped us navigate the difficult decisions like this one, and an even harder one a few days later.
So why now? Why am I sharing the harsh reality of decisions families have to make when caring for someone with Alzheimer’s? Because next Saturday, Sept. 24, I’ll join hundreds of Triangle residents in the Walk to End Alzheimer’s. I didn’t decide to do this on my own: the financial services firm my husband works for, Edward Jones, is the National Sponsor of the Walk to End Alzheimer’s. They’ve partnered with the organization to raise awareness and support research.
I’ll join Andy and the Edward Jones family and walk in memory of my mom, Diane Schumacher.
I’m sharing my story so more people know how valuable the Alzmeimer’s staff and resources were to our family. Not the doctor, not the nurses, not the facility, but the Heart of America Chapter of the Alzheimer’s Association in Kansas City. Here’s just a sampling of how they supported my family:
- My mother and father joined support groups; one for the patient, one for the caregiver.
- My mother participated in an Alzheimer’s Walk, just like I’m about to do.
- They provided options and resources for respite care and caregivers.
- I joined a chat room in desperation of getting help from others going through the same challenges.
- They advised us about medications when we disagreed with the doctor’s prescriptions.
The association supported my family through the entire journey: my parents in the beginning, and my brother, sister and me through the end. One of the staff members even came to my father’s funeral. My mother couldn’t come. Why? Her disease. It wasn’t possible.
I can share more stories of the the difficulties we faced, like when my mother got angry and combative at the Alzheimer’s facility, and they had to admit her to the emergency room. I can’t bear to talk about what happened, other than to say they sent her away for a few weeks to calm down. Those were the darkest days of the disease. That’s why we need to find a cure.
I want to end on a positive note: in addition to the staff at the Alzheimer’s Association providing guidance and support, we met an angel at the facility where my mother lived for three years. Her name was Cozetta. Thanks to her, my mother was well-cared for and loved for three years until that morning when she finally let go in 2011. We called Cozetta at 5 am; she wanted to be by her side in her last moments.
Most of us know someone dealing with a family member who has Alzheimer’s. If you have been touched by this disease, think about showing your support. Here’s Andy’s donation page. We’ll be walking in memory of my mom.
You are stronger than you think. 