Hello to the Long Goodbye

When dementia comes knocking, no one is ever ready

She stood at the foot of the bed, packing her suitcase.

“Mom, what are you doing? We just got here,” I said.

She turned to look at me, her face a map of confusion. “Aren’t we going somewhere?” She looked around the guest room of our friend’s house. “Where are we again?”

This is how it began for my mother, the heartbreaking treachery that is dementia. We were on a family vacation in Sweden, a country she loved to visit with us, but on this trip in 2019, at age 82, she seemed less sure of herself. When we left our friend’s home to go to our country house in the north, she walked through the rooms as if she had never been there before. One day she wandered out the front door and down the dirt road without saying a word to any of us. From an upstairs window, I saw her standing by the fence across the road, watching the sheep, my petite mother in my oversized red fleece, looking impossibly small, like a child. I called to my daughters downstairs. “Go and walk with Grandma. I don’t want her to get lost.”

My mother is a tireless walker; she walked every day around the lake in her condo development. But there was something aimless about the quality of her walks now—more a wandering than a purposeful hike. My older daughter reported later that when they caught up with her, she looked at them a little blankly, delighted but surprised to see them.

“Where did you come from?” she asked.

This trip was the first time I had seen her so disoriented. I tried to bat away the unease I felt at these changes, but the signs that something was awry kept coming. When we returned to Florida, where she lived alone a short drive from my house, I checked in on her daily. There was an unpaid pile of bills on the table. When I asked her about it, she confessed she just couldn’t “think straight.” For the first time in her life she asked for my help to pay the bills, to balance her checkbook. A few times I came by the condo and found the door unlocked when she left for a walk. She had stopped driving before she came to Florida and I accompanied Mom to all her doctor appointments. But she couldn’t keep track of when they were scheduled, even when it was written on her kitchen wall calendar.

“I don’t know what’s wrong with me,” she would say. “Why can’t I remember anything?”

When I shared my concerns about these changes with her primary care doctor, the doctor recommended an assessment of cognitive function with a neuropsychologist. In early 2020, Mom had the evaluation, which lasted over two hours including an interview and a battery of different cognitive function tests. She was exhausted when she came out to the waiting room.

The day the neuropsychologist called, I was in Walmart, buying toilet paper. A mundane setting for a conversation that I had been dreading. He told me the evaluation showed definite cognitive loss, perhaps dementia, maybe Alzheimer’s, he wasn’t sure, we would need to schedule a brain scan. When could we make an appointment?

My voice shook as I told him I would have to call him back after I checked my calendar. Driving home, I remembered the conversation I had with Mom several years earlier. She told me the illness she feared most was “losing her mind,” as she put it. And she’s not alone.

Some 78% of people globally are concerned about developing dementia at some point in their lives. The idea that our cognitive health won’t keep pace with our physical health is terrifying. Today, more than 6 million Americans live with Alzheimer’s or related forms of dementia, among the 55 million people worldwide living with dementia. It is the seventh leading cause of death and one of the major causes of disability and dependency among older people globally.

I thought about the pile of novels on my Mom’s coffee table, the crossword puzzles she was addicted to, the New Yorker magazines she read cover to cover. The animated conversations about politics (she was an unabashed troll on certain Facebook pages, not afraid to get into an online brawl and defend her progressive views). She delighted in her five grandchildren and the social life she had managed to create in the Florida town she had reluctantly moved to (neither the sub-tropical climate nor the red-state politics were her cup of tea) in order to be with her two daughters.

How much of this would change and how fast would it change? Where could we find support? So many questions. This was a change none of us were prepared for but I knew Mom wouldn’t have to make this journey alone.

When I told her the results of the test, I described it as “mild cognitive impairment,” latching onto the least frightening part of the diagnosis the neuropsychologist had shared. She nodded. “I knew something was wrong. They’ll be able to do something, right?” she asked. “They” being the doctors, my mother part of a generation with an almost godlike reverence for the ability of Western medicine to cure almost anything.

“Maybe,” I said. “I hope. Let’s wait and see.”

This is how my mother’s experience of dementia began. Four years ago, we didn’t know—couldn’t know—what lay ahead. What I do know is that dementia doesn’t just happen to the loved one with the illness; it happens to the entire family. It takes enormous emotional and often financial resources to support a loved one with dementia. In our case it wasn’t long before I became Mom’s primary caregiver—a role I had always assumed I would have as her oldest child, a role that I thought I would never have reason to question.

In this newsletter, as I continue to share our story, I hope that the experience, insights and resources I have gathered will help other caregivers of loved ones with dementia. There are a lot of us. Each year, more than 16 million Americans provide more than 17 billion hours of unpaid care for family and friends with Alzheimer's disease and related dementias, according to the Centers for Disease Control and Prevention.

There has never been a time when my mother and our family needed our community more.

Question for the community

Has your family been affected by dementia or Alzheimer’s? What do you most need for support? How can we help each other? Please share in the Comments.

Three Songs for 3D

Divorce

“It’s Too Late,” Carole King

Just as my mother’s cognitive losses came to the surface, so did my own sense of other losses and I couldn’t get this song out of my head: “There's somethin' wrong here, there can be no denyin'/One of us is changin', or maybe we've just stopped tryin'/And it's too late, baby, now it's too late/Though we really did try to make it/Somethin' inside has died.And I can't hide and I just can't fake it.”

Dementia

“Swan Song,” Victoria Canal

Spanish-American singer songwriter Victoria Canal’s voice gives me shivers. This song squeezed my heart so tight: “And on my way, I would visit your mother/If I were you, I would ask about her life/Maybe you'll find that being noticed for so long will make her cry/Who knows how long we got?/As long as I'm breathing, I know it's not too late to love.”

Destiny

I am grateful to my oldest daughter for introducing me to this talent. This song has been an anthem of mine for the past couple of years, seeing me through hard days:

I know that you get so used to it
Always living in regret
Your dreams never left your head
But when you talk to me
I can see the light shining
So bright that it is blinding