63: The Power of What Is

63: The Power of What Is

From Chicken Soup for the Soul: Living with Alzheimer's & Other Dementias

The Power of What Is

The larger the island of knowledge, the longer the shoreline of wonder.

~Ralph W. Sockman

I pressed the phone against my ear, not wanting to miss a word the doctor said. “The PET scan was affirmative for Alzheimer’s,” his voice matter-of-fact.

The doctor explained how both hemispheres of the brain have five lobes, and while my husband Ray had plaque in four of them, there was none found in the frontal lobes. This meant he would still have the skills related to attention, planning, and motivation.

Odd as it might sound, this information thrilled me. I knew from his primary care physician’s diagnosis, and Ray’s increasing confusion in many areas of his life, that he had Alzheimer’s. These new facts would help me be a better caregiver.

I approached caregiving in much the same way I had approached parenting my young children. When I ran into problems while rearing them, I pulled out my books on child development and looked up the characteristics of a child at a given age. I could then adjust my expectations and requirements, and make both of us feel better. I called it the power of “What Is.”

Based on what the doctor told me, for now Ray still the skills necessary to pack his backpack with what he needed for his weekly art class at the Alzheimer’s Association; or make a short grocery list, walk to the store, and buy what he wanted.

“Can he really pack his own backpack?” other caregivers asked. “Aren’t you worried he’ll get lost when he walks to the store?”

“He can still organize his things. And he wears a MedicAlert + Alzheimer’s Association Safe Return bracelet,” I told them. “He walks all over our neighborhood and never gets lost.”

But he couldn’t do other things our friends with Alzheimer’s could do. I was deep in thought about my conversation with the doctor when Ray walked in wearing old, baggy sweat pants; a crisp, new short-sleeved dress shirt; and the brown felt hat he’d taken to putting on in any kind of weather.

I looked at my husband. Comfort was now one of his greatest concerns, and my concerns had grown much more serious than clothing. Making sure he wasn’t going to be too warm or too cold was what mattered.

“Let’s get going. I’m hungry,” Ray urged. Recently I’d noticed him having more trouble coping as evening approached. I’d heard how many people with Alzheimer’s had increased difficulties in the evening. There was even a name for it: sundowning. Ray’s anxiety could swell into a tidal wave washing over our house if I pushed him when he was tired and his confusion greater. I grabbed the car keys and we headed out for dinner.

When we got to the restaurant Ray pulled out his reading glasses, but didn’t look at the menu. “What are you having?” he asked.

Before Alzheimer’s took over our lives I hadn’t realized how much memory is involved in selecting a meal. I look at an item on the menu, picture the food in my head, and remember whether I like it or not. I had just opened the menu when Ray stood up and headed for a neighboring table.

“Whatever those people next to us are having looks good. I want to ask them what it is,” he explained when I took his arm and settled him back in his chair.

A few days earlier we’d had lunch with another couple from our Alzheimer’s support group and I’d run into the same embarrassing situation while her husband sat quietly in his chair. The wife had said mildly, “I just order for both of us.”

Ray’s restaurant behavior was quite new and I searched for the requisite skill to handle it. “You like Pad Thai. I can order that for you,” I offered.

Ray nodded, looking relieved. I made a mental note to follow this method from now on. If I eliminated the confusion for him by responding to appropriate expectations, we could enjoy these moments of companionship.

As soon as we got home we started our evening ritual. We put our large calendar out on the kitchen table, like the one I had used for lesson planning when I taught high school. Ray drew an X through the day drawing to a close.

“I have my Kaiser class tomorrow,” he said. I wrote “Kaiser class” on a yellow pad labeled “Ray’s day.”

“I can print off directions for the bus from here to Kaiser,” I offered.

“I remember how to get there,” he said. “And I have directions from before.”

“Let’s get them out.”

Ray had been attending a weekly class on managing anxiety for several years, but could no longer drive and was becoming surprisingly adept at using the bus system — as long as there was only one transfer and I provided him with written directions. He enjoyed the people he met along the way, and didn’t mind if he headed in the wrong direction occasionally. He would ask questions of the driver or passengers until he somehow righted himself. Plus he had his Safe Return bracelet.

“There’s an 8:10 bus,” he said, looking at the directions. “I’d better get up at 5:00.”

“You don’t need that much time,” I said gently. “That’s three hours.” Numbers could do tricky things in his head.

“6:00, then.”

“Or 6:30,” I suggested. I knew when his alarm went off he would probably get right up and head for the shower. But sometimes he turned the alarm off and went back to sleep, having no memory of it going off when I woke him. So right now I was his backup alarm.

Setting expectations for Ray isn’t easy. Once I understood what to expect and how to respond, we would have a fairly smooth time for a while, and then what he was able to do would change.

But we are managing, and sometimes even thriving, day by day, as I pay close attention to, and plan around, “What Is.”

~Samantha Ducloux Waltz

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