Tag Archives: relationships with elders

Dementia Foils the Best Laid Plans

Some ideas nag at you until you finally act on them. Last September I was angry with myself because I never got around to driving my mom to the beach for a day. When she was younger, she loved the ocean.

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Every year she spent a week at Cape May before the Memorial Day tourists arrived. She returned again after the Labor Day crowds were gone. Over the course of her life, she went on whale watches and dolphin cruises around the Atlantic and North Pacific. Though she didn’t learn to swim until she was over forty, she was mesmerized by water.

One of Mom’s favorite expressions was, “Timing is everything.” If I had listened sooner to that little voice telling me to take her to the Jersey Shore, things might have worked out better. Instead, I took her this past week and the experience defied all expectations — in a negative sort of way.

I honestly thought I had it all figured out. Ice, cooler, water bottles, car snacks, beach chair, SPF 30, blanket, towels, sunglasses, etc. I played old Beatle songs on the drive to New Jersey and got her clapping along. By the time we arrived at the beach, she could almost sing the entire line: “We all live in a Yellow Submarine.” Success ended the minute we got out of the car.

Walking the plank ramp to the boardwalk took nearly 20 minutes. She just couldn’t see or understand how to walk on the boards that had once been so familiar. My arms were loaded with stuff, so I propped one of her hands on the metal bannister and took her other one in mine. Two very kind ladies stopped to carry some of my paraphernalia so I could focus my energy on helping mom. She barely made it to the railing where the ocean was visible at last. I sat her down to take a rest, then tried to figure out how I could possibly shorten her trip back to the car. I was so grateful for the help of passing strangers who sensed the weight of our distress. Finally, I got Mom to the car and took her to a beach restaurant for lunch.

From there she could see the waves and hear the seagulls. But she hated the cool breeze that was such a treat for all the other customers. Her meal of fresh fish was unfamiliar and I had to coax her to eat tiny bits of the flounder and potato salad she would have wolfed down in years past. Nothing about the day resembled the dream I’d harbored for so long. No bliss, no smiles, no final happy memory of a day at the beach with Mom.

By the time we started back, I felt like the demented one. My dream was too selfish and didn’t fully account for my mother’s limitations. About halfway through the drive home, she was happy again as the Beatles played. When one song ended, she turned to me and asked, “About the water…. the time with the water? Is that over now?” — as if she wanted to go back again. I thought I would scream. But I didn’t. I nodded my head and cranked up the Beatles. They were four guys from Liverpool with the world’s best sense of timing.

When Dementia Takes Names

In the old days, I thought I’d be devastated when dementia stole my name from mom’s memory. I believed that once my name disappeared, we’d be in dark, ominous territory. The truth is, many other things were far more painful than the day she first lost track of who I was.

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Perhaps it was because my name stayed in her mental directory long after the words for shoes, comb, and fork had disappeared. She could still identify me six years past the onset of dementia. It’s also possible that since the emotional value of our relationship was never erased by the disease, the name business began to seem less dire.

The PBS program, The Forgetting, reminds caregivers that “recognition is more than a name.” It “isn’t a measurement of how important you are to the person” — it’s simply a function of which neurons still work. While I’m a bit sad that she forgot the name she chose so carefully in the months before I was born,  she still seems to absorb the essence of me in a very comforting way. Given the choice of being known by a name — which is all that most people will recall about us — or being recognized for your character and how you make someone feel, I guess I prefer the latter. It’s a sign of deep connection and real love.

People probably think I’m nuts when I laugh about how my mom loves to walk with my sister and me, not realizing we are her grown children. She’s like a drunken sailor who can’t say who’s holding her hand, but feels sure that the odds of having a good time increase in our presence. That may sound crude, but I feel I must be grateful for small things that keep joy in our relationship. As the authors of The 36 Hour Day point out, “a dementing illness does not suddenly end a person’s capacity to experience love or joy, nor does it end their ability to laugh”.

It’s one of the few truths of dementia that actually add a bit of sweetness to life.