My Mom’s Question

On a visit to Decorah in the summer of 2015, after emptying her small suitcase and settling into her favorite lazy boy recliner, my 94 year-old mother turned to me and said, "I'm worried about my father and think I need to go home to see if he is okay." My brother Pat had given me a heads-up about this issue, as mom several months earlier had started talking about caring for her father and mother. Albert Thomas died in 1942 and Florence Thomas in 1979.

My Then Answer

"How do I answer my dad with dementia when he talks about his mom and dad being alive?" This question from an Alzheimer's Association post on Facebook triggered the memory of that August 2015 visit and my mom's comments about her father. But it was the author's answer to the question that seized my attention and suggested how wrong my first approach to my mother's dementia had been.

“Enter into his reality and enjoy it. He doesn't need to be oriented...If dad spends most of his time in 1959, sit with him...If he tells the same story over and over, appreciate it as if it's music, and you keep coming back to the beautiful refrain.”

This simple advice, "enter into [her] reality and enjoy it," is what I wish I had known then. Instead, I fought her reality, tooth and nail. Another brother even took mom to her parents' graves to prove to her they were dead. "How could he?" I now think. Yet I know I would have done the same if her parents had been buried in Decorah. Instead, feeling desperate on that August 2015 day, I said "let's call your sister Fawny, Sister Marilyn Thomas, and she will tell you the truth."

Mom’s Dementia Journey

In March 2016 my brother Pat put our mother in a memory care unit. A neighbor had found her wandering around outside her house late at night. During the month before this event, Pat would check on mom every day and usually find she had set the dining room table for guests who would be arriving "very soon." He would tell her they would be coming "tomorrow" and "not today." He had learned to "enter her reality."
 
Mom would spend a little over a year at Senior Star at Elmore Place before she died on June 25, 2017. I recollect two conversations during her stay relevant to the theme of this blog. The first occurred as my partner Rebecca and I walked with mom back to her room. She told us she was going to England the next week. We asked her why and what she was going to do and other questions you might ask someone who really was going to England. Those questions were better than "you can't go to England." But still short of taking mom's reality seriously.

The second conversation took place in her room and included Pat. Our mother described herself as the leader of a group of angry residents who were planning to take over the facility. We knew she hated every minute at Senior Star, despite the staff's competence and kindness. Mom did not want to be there, away from the home she had lived in for 65 years. Pat and I listened in awe as our mother before our eyes turned into the TRIUMPHANT CHE GUEVARA OF SENIOR STAR. We had rarely seen her so alive.

My Answer Now

As I thought about how to enter my mom's world, I recalled the 2014 film Glen Campbell: I'll Be Me. This film chronicled Campbell's final concert tour as he descends into the mire of Alzheimer's. Walking off stage after singing Gentle on My Mind, By the Time I Get to Phoenix and other standards, Campbell would be confused about what city he was in. One of Campbell's doctors was interviewed and said the last memories to go are those most deeply imprinted upon a person's brain. For Campbell, it was his music.

For my mom, it was caring for her parents, hosting friends and family, traveling to England, and running an institution. Her father died of a heart attack in the middle of WWII with only mom and her mother at home. Brother Al was off fighting in the war and sister Fawny was in the convent. It must have been hard for mom and grandma to make arrangements. Maybe mom never had a chance to say good-bye to her dad. I don't know because I never asked when she said she needed to get home to take care of her father.
 
Mom and her sister Fawny made the difficult decision to put their mother in a nursing home when she started falling at age 93. Dad talked mom into going on a short vacation to South Dakota the winter of 1979 and her mother died while they were gone. I know mom always felt guilty and when in 2015 on another visit to Decorah she talked about needing to get home to take care of her mother who had died in 1979, I could have said "what kind of care does she need?"
 
When mom started setting the dining room table, we could have asked "will you be serving your famous chocolate pie? or will you be playing bridge? or Uno, if grandchildren are coming?"
 
"Oh, so you are planning a trip to England." And instead of the generic questions I asked I could have been more specific. For example: "Will you be going to London where you always wanted to go and finally did with Al, Jackie, Fawny and me in 1999? Will you see the Queen? Or Houses of Parliament we were not able to see in 1999? And "Is dad (who died in 1993) going with you?"
 
During the last 15 years of her life, mom repeated this story more than any other. I heard it hundreds of times, as did my brother Pat. Mom worked as a bank teller during WWII. Because she was a college graduate she was quickly made head of the department. This promotion put her briefly in the hospital with anxiety but she recovered and went back to her position until the end of the war. She met my dad in 1947, they married in 1948, had me in 1949, Peter in 1952, and Pat in 1954. Mom never again worked outside the home.

Mom's Che Guevara moment at Senior Star gave me a new perspective on her bank teller story. I had often wondered "why that story?" Maybe if I had asked,"Do you wish you had continued at the bank after the war ended?" Or, "Would you have liked to run some business after your three kids left home?" I would have learned something valuable about my mother.

"Meet Them Where They Are"

My friend Nori Hadley is a health professional and has worked at a Decorah nursing home for 10 years. She has lots of experience with residents and their families dealing with dementia. I asked Nori what advice she would have given me in 2015. She said:

“Meet them where they are. If they are searching for cows that got out of the barn, look out the window and ask about the farm.”

I pride myself on being curious about the lives of people I meet. When my mom entered the world of dementia, my curiosity fled and was replaced by denial. I look back at mom's stories and see now they were her attempts to make meaning of her life. For Glen Campbell, the last to go was music. For mom, it was these stories.

They demanded a hearing then and I am giving them one now.