San Francisco Chronicle - (Sunday)

Mom taught me to speak language of dementia

- By Dave Iverson

Early one morning in the fall of her 101st year, I found my mom sitting alone in the kitchen of her Menlo Park home. She was wearing her favorite deep maroon bathrobe, with her walker perched beside her. My mom had a distinctiv­e personalit­y with a distinctiv­e name to match — Adelaide. But this morning she was uncharacte­ristically quiet, and then she turned toward me and without preamble said: “I think there are two Adelaides. There’s the good Adelaide, the one who’s pretty and smart and knows how to do things, and there’s the bad Adelaide, the one who’s ugly and stupid and can’t do anything. I’m not sure which one is here right now, but I think it’s the bad Adelaide.”

I remember closing my eyes, taking a deep breath, and saying to myself, “Well, here we are.” I’d moved in with my mom six years before when she could no longer live alone. I was a 59-year-old broadcast journalist at the time and had no idea that our caregiving journey was just beginning. The early signs of dementia had been apparent. She’d repeat herself, say things I knew weren’t true, confuse her past and her present.

Usually, I responded in not very helpful ways. I’d correct or cajole — trying to persuade her that she was wrong, and I was right. I didn’t stop to consider the possibilit­y that her version of reality might be truthful, too. And that’s what had made her descriptio­n of the two Adelaides that morning so striking; she’d described what was true with searing precision. My mom had always been sharp as a tack with a tongue to match, and it took me a long time to realize that even as her dementia advanced, she was still that person. But now she was looking out onto to a new and unsettling terrain.

One day I walked into her room, and she said, “David, I know you were married to someone else before you were married to me.”

In that moment, all I could think to say was, “I’m not your husband, Mom, I’m your son.”

It wasn’t helpful.

To focus on what someone is experienci­ng rather than what they are saying is no easy task — one I would fail at for a very long time.

Eventually, I realized that her desire to see me as her husband made complete sense. My mom had always preferred the company of men, and that Adelaide hadn’t gone away. She was just a starker, more concentrat­ed version of herself. My dad, whom she adored, had died 20 years earlier.

And she still wanted a man. After all, I looked a bit like him, and in her view, I was available.

The old adage, “Everyone is entitled to their own opinions but not their own facts” isn’t necessaril­y true for someone living with dementia. My mom wasn’t expressing an opinion, she was expressing her own set of facts. She wasn’t making something up — she was reporting her experience. Throughout most of our lives, language helps us define what we think is true, but perhaps as we age, what we see as true begins to redefine our language. And it’s up to us, on the other side of that veil, to understand that.

One day, when we were sitting on her back patio, she said to me:

“I feel like the sun surrounded by clouds. The sun understand­s me. It’s trying to poke through the gray.”

I can’t imagine a better descriptio­n of what dementia must feel like. Her words helped remind me that what mattered most was to take in and treasure each moment — where time and existence intersect and would never do so again in quite the same way.

That’s what I tried to remember one fine spring day when my mom was 103 and we drove to the beach, a destinatio­n she’d always loved. We’d made that drive over the Santa Cruz Mountains to Highway 1 hundreds of times. But on that day, when the ocean came into view, her fading eyesight wasn’t able to take in what lay ahead. As we got closer I said, “I have to keep my eyes on the road, Mom, so let me know when you see the water.” About a 100 feet from the ocean she exclaimed, “I see it!” And a wide smile creased her face.

As we drove south along the coast highway, I knew that later that day she might well tell me she hadn’t been to the beach for a long time. And by now I understood that she’d be right. My job was simply to take in the joy I saw on her face and remember that moments are to be treasured because they do not last — like a cloud pushed by the wind — moments part as they become.

We came to a stop at Pescadero State Beach, our ocean destinatio­n for the past 60 years. Nobody in my family knows why. Bean Hollow, a few miles farther south, is prettier. Pomponio, a few miles to the north, affords longer walks along the cliffs. But Pescadero is home. We pulled into the parking lot and watched the sea, and we were quiet.

Together, we took in the sound of the wind and the waves — until I finally spoke.

Me: It’s pretty out here today, isn’t it?

Adelaide: I like what’s covering me. Me: Do you mean the blanket? Adelaide: I mean the sky. Dave Iverson is a retired broadcast journalist and the author of “Winter Stars: An Elderly Mother, an Aging Son and Life’s Final Journey.” Adelaide Iverson lived to be 105.

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