Resolving a quandary – one communication success story with Alzheimer’s

One of Dad’s first symptoms of Alzheimer’s was his inability to keep track of the days of the week.

Over two years ago, in July of 2009, I was driving to Dayton to visit my parents and I called to let them know I was on my way. Dad answered the phone.

“Are you going to go exercise today?” I asked him. Since he had been under the care of a cardiologist, he regularly went over to the monitored exercise facility at a nearby hospital.

“I don’t go on Sundays,” he said.

“It’s Wednesday,” I told him.

“Well, I’m not going anyway.”

I don’t know why my dad always thought it was Sunday. Maybe it was because he was raised by an extremely religious mother, and was a devout Catholic himself. The faith, the sacraments, attending Mass on Sunday morning, all those things were important to him.

This past Saturday Mark and I took dinner up to Mom and Dad to share with them. We were sitting around the kitchen table eating when Dad started making a motion with his hand over the wheel of his chair. I knew he wanted something but I didn’t know what. Mom and I both tried to ask him specific questions, but were unable to get to the bottom of it.

“Say what you what,” Mom said. “Maybe we should get the whiteboard out for him.”

“Maybe he needs a hankie,” Mom said noticing that his nose had started to run. I got one for him and that seemed to solve the problem. I also got the whiteboard and placed it on the table beside him.

Our conversation drifted to my memoir about Annie. I try not to bring Annie’s name up too much around Dad because it always makes him cry. But I had talked about the book at a nearby college class earlier in the day and I wanted to tell Mom about it.

Dad reached for the whiteboard and marker and started to write. “I” he wrote clearly. And then he wrote what looked like an “a” followed by what might have been multiple “m’s.” He was writing in cursive with small letters and a thick pen that all ran together. He also was not spacing the letters well and they were on top of each other. I had to watch the movement of his hand and try to guess the letter he was making.

“I am?” I asked.

He nodded. Then he continued to write what I was eventually able to decipher, with some effort, “in a. . .”

I had absolutely no clue what he wrote next. I guessed. Mom guessed. “You are in a what?” Mom asked. I asked Dad to print the letters really big. He wouldn’t. I started getting a sick, panicky feeling in my gut. What if I can’t figure out what he is trying to say? I thought. He was trying to communicate and I wasn’t able to understand. I got more desperate and tried to tease it out of him.

“Why don’t you say the word,” I suggested, “and I will spell it for you.” I think he got the joke, by the way he darted a look at me. My dad was always a big tease, and he could take what he could dish out.

All of a sudden, out of Dad’s mouth the word “quandary” came, clear as day. Jaw-dropping amazing. How did he manage to enunciate that word when he rarely speaks at all?

Uh oh, I thought. This was not going to be a simple “Pass the lima beans,” request.

“What are you in a quandary about?” I asked. Now I was really worried. Dad was upset, confused, or concerned about something and I might not be able to figure it out. We were talking about Annie, so I thought that it had something to do with her. “Write it down, Dad.”

“My daughter,” he wrote. “Which daughter?” I asked. “Are you in a quandary about Annie?” He nodded. Then I started to sweat. We had been at this for what seemed like an hour, although I suspect it was only several minutes. I started making guesses. I was afraid he didn’t remember that Annie had died.

“Are you wondering where Annie is?” He shook his head. “You remember that she died, and she’s gone now?” He nodded and began to cry. “What is it that you’re worried about?” Then I added, “You don’t have to worry about her now. She’s happy. She’s in heaven.”

He went back to the whiteboard and wrote something that looked like “Did a prt” and I eventually deciphered as “Did a priest,”

“Are you worried that she didn’t receive her Last Rites?” I asked. He nodded. The weight of the world dropped off my shoulders.

“She did, Dad. I was there. Mom and I both were there. Father Meyer came to the hospital early one morning and celebrated the Anointing of the Sick with us for Annie.”

“I told you about it, Jerry,” Mom said. “I hope you remember this time.”

Pulling threads of intelligible communication out of the Alzheimer’s plaques and tangles of Dad’s once-sharp brain was like wringing a drop of water out of a stone-dry sponge. But we got there. Thankfully, we did.

Communicating with a Whiteboard—Caregiver makes minor breakthrough

So many times when I write about my dad and his Alzheimer’s the posts are about loss and sadness. Today I’d like to report that my mom, who is my dad’s primary caregiver, made a minor breakthrough and discovered that he can write his responses to questions.

Earlier this week they were having dinner and he started pointing for something on the table, as he often does. Mom got tired of playing 20-questions with him. She grabbed a little paper tablet from the countertop and a pen, handed it to him, and said, “Write down what you want.”

Immediately my dad wrote “Lima Beans.”

The next day, my mom had prepared steak for him for dinner. She cut it into small pieces for him as she does most of his food. But he wasn’t eating it. He was just pushing it around on his plate. That’s not terribly unusual because he has started to play with his food some and at times gets distracted by that as if he forgot it was something he should eat.

Mom got the tablet again and wrote, “Meat. Don’t like the taste. Can’t swallow it. Can’t chew it,” down the page as a list. “Circle the reason you aren’t eating the meat,” she said. Dad circled, “Can’t swallow it.”

Tears sprang into my eyes as Mom conveyed this story to me over the phone. I guess with Alzheimer’s we assumed he wasn’t able to think about the answer to the questions. What Mom found out is that he is not able to speak the answers. His handwriting is difficult, but not impossible to read, but his printing is pretty clear.

Dad’s home health aide suggested we get the dry-erase whiteboards.

Image from http://www.expomarkers.com/home

Yesterday I went to store and bought a couple of whiteboards and extra markers for them.

I was still at my parents’ house when Mom started working on dinner. Dad was eating some warmed-up french fries to tide him over. I was sitting at the table beside him when he started pointing at something. All I could see in the line of his point was the pepper shaker. “Do you want the pepper?” I asked. He shook his head no. “The salt?” Again, no. I got the whiteboard and asked him to write it down.

“I need, ” he wrote and then stopped, like he didn’t know the next word. “If you can’t think of the word, Dad,” I said, “try to draw a picture of it.” He drew a square. Then continued to write, “to wipe my fingers on.”

He wanted a napkin. He was pointing across the table to where my mom usually kept the basket of napkins, but they weren’t there right then because Mom had cleared the table to make room for me and their laptop (I was trying to save photos for them from their old desktop onto their laptop).

Dad’s communication breakthrough coincided with a breakthrough of my own. I keep telling Dad, “It’s going to be okay. I know this situation isn’t ideal, but we’re doing okay. Mom is taking good care of you. You are doing good. I’m proud of you. We’re going to get through this together.” It’s like a litany I leave him with when I go.

I think yesterday, for the first time, I started to believe it myself.