Tag Archives: relationships with elders

Dementia and the Struggle to Communicate

It used to happen occasionally, but now almost all of my mom’s speech comes out garbled. If I walk up behind her when she’s zoning out, it sounds like she’s speaking an alien language. My standard reply is: “Yes, of course.”

Smoke on the Water

Foggy morning, Henning Pond

“Of course” is one of Mom’s favorite expressions. It’s a phrase she likes to hear from me. But most times I have no idea what I’m affirming when I say it. I try hard to understand her crazy words from context, but when she gets that distant look in her eye, I don’t know what part of her galaxy she’s discussing. My sister thinks our mom is remembering old conversations. She’s heard our mother mention the names of her siblings when she’s in these trances. That may be true at times, but more often I find myself  scanning the room, trying to discover what’s prompting her talk.

Mom’s language sounds like the babble of children who speak before they know words. They point at things, their eyes light up. Their sincerity animates every little thing they struggle to say. And my mom is a very tiny lady who can be cute as a three-year old when she starts telling you one of her stories.

She makes me remember when I was a little kid. I think I became a “writer” when she gave me my first crayons and some blank construction paper. The letters of the alphabet were still a mystery to me, but I had my own set of scribbles that I used to create “words.” My stories were mainly about Blackie, the puppy we had when I was still too young for school. She listened while I “read” her the symbols she couldn’t decipher, completely unaware that she was launching a career.

Mom’s stories today, however, are not about puppies and I’m afraid that I could misinterpret her. What if she’s trying to tell me about a problem or a pain? She’s still got dental issues that we don’t know how to treat — and her sluggish digestive tract is a chronic preoccupation. There might be other matters, too, that we haven’t noticed and she can’t explain to us.

The master reference book for caregivers, The 36-Hour Day, recommends that caregivers ask specific questions to try to narrow communications down to their simplest form. Authors Nancy Mace and Peter Rabins suggest pointing at body parts and asking, “Does this hurt?” or “Do you hurt?” instead of using a more general question. They also observe that people with dementia communicate better when they are relaxed. So it’s important to appear calm (even if you’re not) and make it easier for them to express important thoughts.

When in doubt, I use the hug method if I feel I haven’t gotten the true gist of her words. The slow, simple hug is 100% effective at settling her down. Once she is calm, I can tell more accurately if there is something weird provoking her. Hugs are basic human medicine that can be administered anytime, at no cost. They help many dementia patients relax enough to communicate. Imagine where we’d be if drugs ever achieve that kind of success rate.

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.