By Mary Kay Roth
When my parents were well into their 90’s and dad’s dementia was becoming more pronounced, much to their dismay we took away their car keys (though not their actual vehicles). So, one summer afternoon when they were running low on bread, mom crawled into the driver’s seat while dad pushed their truck down the driveway – attempting, they claimed, to jump start the vehicle so they could head for the grocery store.
Our family still giggles over this tale, one of the many escapades of my mom and dad.
It’s different this time around. My sister isn’t supposed to have dementia.
Rose Ann is my older sib, the person I shared a bedroom with – who I tormented as a child, making fun of her parade of boyfriends – tattled on when she backed our car into a light pole. She tolerated and survived being the oldest of four, eventually finding her way to physics and computer classes at the University of Nebraska-Lincoln – at the time, often the only female in class. Crazy smart, she went on to become an executive at IBM, battling her way up the ladder in a man’s world.
She lives in Texas nonetheless, has been my occasional anchor through life, sending care packages when I had morning sickness, offering advice through my divorce, listening with understanding as my then adolescent daughter went bonkers. She remembered every single birthday and milestone.
Rose Ann is brilliant, solid and stoic. She faces life head-on with honesty and guts.
And yet.
Almost a year ago I started noticing she was repeating things during our phone calls, rationalizing she was tired. At the same time, my daughter noted that her aunt was missing birthdays, and my niece said Rosie was getting names mixed up. Her dear best friend was concerned.
One evening last summer her son, Ben, texted and asked if we’d noticed anything different about his mom.
We all needed to face the truth.
Several months later I was traveling in Greece when I got a call from my sis. I stepped outside a local market, sat down on the ground and listened as she reported results from her brain scan: She had abnormal protein deposits (amyloid plaques), building up between brain cells.
Indeed, she was one of 7 million adults in the U.S. – 65 and older – living with dementia. One of 57 million worldwide.
And there we were, across continents in Greece and Texas, heartbroken and crying together.
My sister – who has trekked to almost every corner of the world – was having trouble maneuvering her way around Austin. She has journeyed to Russia, Europe, South America … down the Nile River … zip lined and scuba dived … taken countless vacations at beaches and Disney World.
But her traveling days were over, she reported. “I’m starting to get lost.”
Strangely, I also found myself lost that day, the ground shifting beneath me.
I wasn’t surprised my dad had memory issues. My sister was closer to the bone. My childhood is drenched in my larger-than-life big sister. Our histories are intertwined. We share the stories of childhood traditions and family vacations – mom’s homemade cornflake chicken and water skiing with my dad on Nebraska lakes.
And yet here we were, standing on the edge of new territory, no compass to guide us.
So, last week, we pointed that compass south as our family headed to Texas. My kids, niece, grandkids.
It was a wise trip. Yes, my sister’s world was getting smaller, but she seemed happy and content in a warm household alongside her husband, Wendall, and their two cats – with her sons and their families nearby.
Our entire family is still a bit befuddled, navigating the contours of this new woman. This new mom, wife, grandmother, sister. But Rose Ann seems to be handling the transition with grace and honor.
Perhaps the rest of us merely need to catch up.
Now a nurse practitioner, my daughter Anna has worked extensively with older people who have memory issues. She advises families to focus on the positive, understand every day is different and every person is different – and practice acceptance.
One of Anna’s favorite stories as a nurse was dealing with a particular veteran constantly agitated and frantic, believing he was getting bombarded by grenades. Anna didn’t argue. She merely got down on the floor with him and suggested they throw the grenades back toward the enemy. They did and life calmed.
We were pretty blessed with my dad’s experience. He remained cheerful and happy through most of his dementia years – our only major challenge happening when Mom died. After sitting beside her bed, holding her hand and bidding her a loving goodbye, Dad broke down sobbing as we held him and told him she was gone.
Two hours later he was asking where she was. And since we had been counseled that retelling and retelling was almost cruel, we started making up yarns. Mom was visiting relatives. She went to the beach. She was taking sky diving lessons. She went off on a motorcycle trip. She was swimming with sharks.
My dad laughed every time we gave him updates, chuckling, “Well, good for her.”
Rosie, meanwhile, is holding her own. She has survived losing a child and a bout of cancer. She is one tough broad.
She forgets and gets discombobulated sometimes, but also laughs at life and was so very happy we were all in Texas together.
Admittedly, none of us knows what lies ahead. This road could get quite bumpy. How can we all come together to support Rose Ann? How can we balance honesty and bravery? Will I get dementia? Our brother? My kids?
I've been reading countless accounts recently about how incredibly hard this could be. But I like to believe that in the coming years we’ll also learn from one another, find riches in a deepening sense of trust and compassion.
“You can’t come to us, so from now on we’ll come to you,” we assured her.
During a quiet moment in Texas, with just the two of us, I asked Rose Ann if I could tell some of her story. She didn’t hesitate, “Of course you can.”
I prodded a bit more. “How are you doing, really? How are you handling this? What can I do? I’ll take you anywhere in the world you want to go.”
She said she was grateful for her extensive travels in life. “I’ve really gone everywhere I want to go. It feels good to be home.”
Then, for one brief moment, she teared up and whispered, “I’m a little scared and a little sad. What if I don’t remember something really important?”
No worries, I responded, holding her hand. “I’ll carry all your memories for you, as long as I can. After all, we’re sisters.”





