I’m still surprised by the ways Alzheimer’s has changed my life.
When Mom was diagnosed, I was a researcher at Microsoft with a dream to open my own consulting practice. I imagined was that whatever Mom might need during Alzheimer’s, Dad would certainly be able to provide.
At the beginning, I was right. Then I noticed Dad begin to change. Dad would call frustrated beyond words after a morning hunt for Mom’s glasses. Dad would hit the ceiling when Mom failed to complete a chore.
Mom’s forgetfulness was normal for Alzheimer’s. But what was happening with Dad? Dad was edgy and seemed on the verge of burning out. He was my most valuable player and he was showing cracks. Was there a way that I could help? Could I lighten Dad’s load even though I lived two hours away?
Back then when I searched the internet for Alzheimer’s, all there was were sad statistics. That and resources labelled as “for caregivers”. I remember thinking, “Whatever I might be as an adult child, I was NOT Mom’s caregiver. DAD was Mom’s caregiver.” I quickly concluded that these resources were for someone other than me.
Only later did I realize that I was indeed a caregiver, and that they were indeed for me. While Dad cared for Mom, I cared for Dad.
My channels of communication with Mom and Dad narrowed when Mom’s feelings began to be hurt by stories Dad would share on the phone. I heard less and less about what was happening with them. That’s when I made a point to visit Mom and Dad more often. I wanted to see what was happening firsthand.
Every visit I saw something so shocking it set off alarm bells in my head. Mom dispensing her own medicines. Mom changing her clothes four times before dinner each night. Mom’s lack of interest in watching TV, her favorite pastime. Mom eating all the food on her dinner plate, then Dad’s plate then on the table.
Dad yelling at Mom until he was red in the face for a chore she had yet to complete. Dad sending Mom out for a walk on her own. Dad locking Mom in the sunroom when he went outside to mow the lawn.
It took until after Mom had passed for me to understand what was universal about these situations. How much effort it takes family members to accept the realities of Alzheimer’s. How common it is for caregivers to burn out. What effort it takes for a caregiver to allow someone else to care for the person they love. How caregivers need as much love as the person who is living with Alzheimer’s and yet are often yet to be aware of their situation to ask for it. How there are many roles that adult children can play in their parents’ Alzheimer’s, even when they live out of town. How much adult children, caregivers and people living with Alzheimer’s all need to connect with others on a similar journey for support along the way.
In April 2021 it will be seven years since Alzheimer’s took Mom. During these years I’ve become an Alzheimer’s author, a Certified Dementia Practitioner (CDP), and a Certified Community Educator for the Alzheimer’s Association. Through it all, my passion remains the same – to inspire caregivers and their adult children to provide the most sustainable dementia care possible for the people they love.
I hope this course makes you feel like you have a friend on your Alzheimer’s journey.