Alzheimer's: Will you know my name?
A million thoughts tore through my brain when the diagnosis of Alzheimer’s came back for my mom. We had known, she had known, for a while that was likely the case, but hearing the official word hit harder than a George Foreman gut punch. Like I would imagine many people react, one of my first thoughts was “Will she forget me?”
That’s a pretty powerful thought. This woman gave birth to me, her oldest. She carried me in her body for nine months. And as dementia eroded her mind, I knew there was a strong possibility over time that she would no longer know my name, nor that of my brother or our children.
I seesawed between a strong belief she would always “know” me, even if she could not call my name, and the fear I would be lost to her. That especially hit hard when my daughter, Alicia, would ask me, “Does Nana know who I am?”
You absolutely cannot – at least I couldn’t – tell a 14-year-old a harsh “no,” but I also made a promise to myself that I would never lie to Alicia. That did not mean I had to hit her full in the face with brutal facts, but I wanted everything I said to be guided by truth. And honestly, “no” was not the answer in my heart.
My family long had a joke that if my Granny said your name in the first three that came out of her mouth, then she wasn’t talking to you. I can’t tell you the number of times I answered when called Melissa, Becky or Lindsay. I knew when Granny meant me. (And by the way, my Granny was in 100% sound mind and solid body when she passed suddenly one morning, days before her 95th birthday.) She had five children and a slew of grandkids, and great-grandchildren. She rarely called Alicia by name but knew exactly who she was.
My mom was known far and wide for her kindness and concern for others, and she maintained that until the very end, as my brother aptly and eloquently explained in his remarks at her celebration of life. He talked about how visitors would walk away from seeing Mom, full of smiles, insisting that she knew them. Her care for others won out over Alzheimer’s. She was the ultimate actress. Mom might know someone was familiar to her, but when they walked away, she would ask Dad who that was.
I was careful when bringing someone to visit Mom or talking about family members or friends to her as she progressed. Mom felt terrible when she thought she should know who someone was but did not. So, I would talk about “my cousin” or “my brother” or “my aunt” rather than “your nephew” or “your son” or “your sister.” That took pressure off of her. I was giving her their relation to me. I never wasted time trying make her remember someone or something. I did not want to embarrass her nor hurt her feelings.
One particularly hard day was my aunt Fay’s funeral. Fay had been extremely dear to me and Mom. She was my dad’s sister-in-law, and after Mom’s dementia diagnosis was one of two people outside of my Dad and me with whom Mom could successfully stay. We watched the horror of Mom being repeatedly devastated by the news of Fay’s death, which was brand new to her each time it was mentioned. We hoped if we took Mom to the funeral, she would remember Fay had died. (In fact, it did not stick; after that day we all made a pact if Mom asked about Fay to say she was working or was not feeling well. Both were plausible to Mom; Fay had been a busy accountant and had battled cancer.)
When I entered the funeral home filled with people, my mom greeted me as she would a stranger. There were so many faces around her. She kept smiling and being pleasant, putting on her best acting. Because she is my mom, I knew. But most people would have had no idea, thinking she recognized them. Alzheimer’s is very strange that way. Mom looked exactly like she always had. The tangles in her brain weren’t visible, so many people thought we were crazy or that she was not very far progressed.
I sang two songs as part of the service. Then afterwards my husband, brother and I rode in Dad’s truck in the funeral procession with him and Mom. Mom went on and on about how beautifully Alicia had sung. She kept looking back at me, smiling, saying my daughter’s name. Music always got through to her; she KNEW my voice singing. At the graveside, I stood with her, the two of us locking arms together. She looked at me and commented about the singing again, calling me “Andrea.” It would be the last time I ever heard my mom utter my name; that was years before her death.
As time passed Mom came and went with recognition. I took solace in knowing she was comfortable with me, my husband and daughter, and that she trusted me. We had many fun adventures together. Her saying my name did not really matter. And, honestly, I never really thought too hard about whether she specifically “knew” who I was, because we “knew” each other. We were comfortable and familiar. And Alicia was, too. My mom always reacted to her granddaughter with connection. She would not always pay attention or focus as Alicia talked, but if you watched closely, there was an ease between them.
One night the summer before Mom died, Dad and I had gone back to her cottage to visit her for a few minutes after her dinner and before that evening’s Caregiver Support Group. Mom was having a particularly hard night, so one of the staff members set out to take Mom on a walk as we left. We walked the first leg of their stroll together, before we peeled off to go to our meeting. As I gave Mom a hug and a kiss goodbye, Mom turned and told the kind staff member, “This is my girl.” I will never forget that moment. It was a small but steady beacon in a long, dark tunnel.
Even as Mom progressed, there was always a bond between us. I’ve heard so many people who have experienced dementia with a loved one talk about the belief that their loved one “knew” them deep down. Patti Davis eloquently described that in her book about her dad, Ronald Reagan’s, journey, Floating in the Deep End: How Caregivers Can See Beyond Alzheimer's. Even when words and names fall away, the soul “knows.”
So, no matter what science might say, I’m siding with the true experts, people who have lived through a loved one having dementia. They “know” us. My Mom “knew” me until the very end.
Helpful Resources:
Andrea Osborne is Capitol Broadcasting Company’s director of content. She has daughter in high school and recently lost her mother who had been diagnosed with Alzheimer’s. She will be sharing her family’s journey here on WRAL’s family section.
