By Barbara Pursley
Alzheimer's Reading Room
Every morning, I had coffee on the phone with Mom. She had good communication skills, but was confused and delusional. I went along with her beliefs that Dad was alive and secretly living in the guest bedroom. Dad had been deceased for six years.
When I began to pack my suitcase for Texas, my anxiety would sky rocket. I knew little about the disease of Alzheimer’s, but I could tell by our phone conversations that Mom’s behaviors were changing. Mom forgot that I was living in California. When we spoke on the phone, she thought I was living in Texas.
My fear was “I wonder if Mom will know my name and will she recognize me?”
Upon entering the nursing home, I had butterflies in my stomach. There were so many unknowns. The nurse opened the secured door and I could see Mom watching television. As soon as Mom saw me she said, “Well, there’s my little girl Barbara.” I immediately felt a since of relief.
Every visit I made to the nursing home was filled with anxiety. Questions raced through my mind. Will she be wet or dry? Was she bathed? Was she given her medications and on and on.
After I moved back to Texas, I still had apprehension about whether or not she would know me when I arrived for visits.
“Sometimes, Mom looks at me as though I am invisible and this was one of those days. So, I got down on my knees, up close to her face, held her hands and she said, “Barbara.” I was surprised to hear my name.
On another day, “Mom was staring out of the window before lowering her head to gaze at the floor. I said, ‘Hello, Mom. It’s Barbara.’ There was a long period of silence while I waited for her to speak. Today, she didn’t recognize me. I felt sad.”
Three years after Mom’s diagnosis, she forgot my name. I was prepared for this loss; however, it was still painful. In contrast, to those who hear their name all day or struggle with the frustration of repetitious questions such as “I’m hungry, Feed Me, I want to go home,” I had to learn that Mom’s silence could be just as uncomfortable and lonely. Silence is not always
Even though Mom forgot my name, she still recognized my face, my voice and my smile.
I saw that it was especially difficult for spouses. Often, I saw an Alzheimer’s spouse connect with another resident believing that person to be their spouse. These were painful times for the husband or wife who came to visit. More difficult than it was for siblings.
Some people say “Why visit if they don’t know who you are? Why go through the pain?” We suit up and show up because we are caregivers. It is our responsibility. Our visits make a difference. We are their voice.
A hug, the touch of your hand or the sound of your voice may be understood in Alzheimer’s world. Caregivers are the light in the darkness of the disease.
It is believed that people in comas sometimes hear conversations, so how are we to know for certain that a person with Alzheimer’s doesn’t understand what we say? We don’t know and we don’t assume.
The last eight years of Mom’s disease, she acknowledged my presence with a smile, reaching her hand out to touch me or the sixth sense that says, “I know you. I love you. Thanks for being here.”
If your name is forgotten don’t assume they don’t know you just because they have lost the ability to communicate with words. Communication exceeds far beyond words. Embrace all of your time together because the sound of your voice, the embrace of a hug, the touch of your hands or the smile on your face may be the blessing of their day.
Rejoice when you hear your name or your loved one recognizes your presence. They might be saying, “Thank You.”
Barbara Pursley was born in Galveston, Texas and is the author of EMBRACING THE MOMENT. Barabara attended Santa Monica College, studied photography, and worked as a commercial photographer before returning to Texas to care for her mother. Barbara also taught journal writing to women in Texas rehabilitation facilities. She put her God inspired journal entries and photographs into book form in 2009.
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Original content Barbara Pursley, the Alzheimer's Reading Room