That One Word

It was easy enough to dismiss the first signs. After all, who hasn’t lost their car in a parking lot, particularly a nondescript white compact car that looks like so many others? Others I ascribed to the occasional senior moment, in fact I met my mother in the lobby of the church on a Tuesday night, and it turned out that we both had the wrong day for choir practice. And getting lost on the way to my brother’s house – understandable since this was a car trip she only took twice a year. Easy to be in denial at this point. Then one day, out of the blue, a tennis playing friend of my mother’s asked me, “Do you think that your mother has Alzheimer’s disease?” I guess my mother had gotten the score wrong one too many times. From that point on, I started watching her like a hawk, unrealistically trying to disprove the obvious. Not only would she lose her car, but she get in a similar car and desperately try to use her key. Lost purses, lost names, lost words.

Then it happened. One day she came up to me and said, “Do you think that Alzheimer’s disease is creeping in?”

My memory is so distinct on this moment. My mother had organized a trip for the whole family to celebrate their 50^th wedding anniversary. She arranged for a week long celebration at a Club Med in the Dominican Republic for all her children, spouses, grandchildren, 23 of us in all. I remember arriving in the open air lobby, and noticing an elderly couple shuffling along, wondered if the vast menu of activities included a senior center. The couple turned and I was astonished to see my parents, who a couple of years ago would have played tennis or beach volleyball. It was an odd vacation for many of us, since our pattern had always been to go somewhere colder than where we were – skiing over spring break, and to the Upper Peninsula Michigan in the summer. I had never been on a beach vacation. I didn’t know how to comfortably sit in the sand or deal with salt water. My father was similarly at loose ends. He certainly wasn’t going to swim; I don’t think he’d taken his shirt off in public for at least 25 years. I brought a backgammon board down to the beach to play with him, but we neither of us could understand how to balance the board in the lumpy sand. My father wandered off and then I heard my mother’s voice behind me.

“Do you think that Alzheimer’s disease is creeping in?”

I can’t imagine her courage to say those terrible words out loud, to admit something she’d probably been trying to dismiss privately for months or years. Perhaps it was the organization of this trip that made it obvious to her. All in all, it was a tour de force, making plane reservations for all 23 of us, flying in from different directions to different airports. We all got there, but when we found ourselves unexpectedly flying first class I knew that something was up. In the coming months, my mother would struggle to find any word, but at this most poignant moment she nailed the description perfectly, “creeping in” – capturing the advancing paste that was gumming up the intricate networks of her brain.

She was still standing behind me, and I squinted tightly into the glinting sun and shuddered beneath my itchy saltiness. How should I respond to her supreme act of bravery? Ours was a loving family who enjoyed rollicking good times dominated by sports, music and laughter, but a family that steadfastly avoided emotional issues. I don’t think I ever saw my mother cry; she would describe my brother Charlie as so handsome, funny and smart with a good singing voice, but never get misty eyed over his penetrating autism. Her stiff upper lip was one of her prized possessions. My grandparents both died within 6 weeks of each other, but my mother busily pressed ahead planning funerals. The phrase “I love you,” was never bandied about in our household. There was the one time I saw my father awkwardly crawling on the floor tussling with the dog, and in what he thought was a private moment said, “I love you Duffer.” But that was it, I don’t think my parents ever said “I love you,” to me. It didn’t matter because it was obvious anyway.

What was she really asking me? Simple acknowledgement that she knew what I knew? Perhaps she wanted to see what it was like to say the word out loud for the first time? I think back to when my mother began to realize that Charlie was not learning to talk. At first she probably told friends that he was just undergoing some tests, that he had a developmental delay but that he was going to be all right. But inevitably she had to say the word out loud for the first time. Except she never used the word “autism.” Perhaps it was just too dreadful and she needed to soften the blow. The story line was that Charlie’s problems were left over from a suspected bout with polio. Now here she was using an equally dire word – Alzheimer’s – out loud for the first time.

Should I stand up turn around and give her a hug and let her know that we would always be there for her? But she had to know that already, she just had to. And like I said we weren’t a hugging family. I struggled up from the loose sand to face her but I still didn’t know what I was going to say. When I turned around, with gratitude mixed with shame and cowardice, I saw that she had wandered off. Perhaps she had accomplished what she had intended. With that one word, she acknowledged that she needed help, and had passed me the baton, transitioning our relationship from mother-daughter to daughter-mother.

Once we got home, I discovered evidence of her heroic efforts to stay on track. There were notepads where she had practiced writing all of her children and grandchildren’s names with their ages. There were reminders sprinkled around the house, many taped discretely inside kitchen cabinets, particularly the contact information for someone named Jordan Luhr. I never did find out who he was, but I could see the slow transition of her handwriting, from her familiar confident loops to an emerging trembly scrawl.

I finally accompanied my mother to her doctor to hear the results of her CT scan. It didn’t really matter what the scan showed, because it was going to be bad news and silently we both knew it. There was no avoiding the fact that she had progressive dementia and a CT scan was not going to make that go away. We sat in the brightly lit waiting room and I saw my mother patting her thighs in time with her jumpy legs. She had not mentioned Alzheimer’s since that moment on the far flung beach. Now she was waiting for someone else to say it out loud, and it was going to be a doctor no less, wearing a white coat with a stethoscope slung around his neck, who would absolute eliminate any possibility for denial. From my own selfish point of view, I was pleased that Dr. Osher would be the bearer of bad news, after all, as a gerontologist, presumably this was what he was good at. He must know how to break the news gently, somehow couple the word Alzheimer’s with hope, handle emotional outbursts, and give us some guidance.

The door opened and Dr. Osher walked in carrying a slim file. “Well Fan, your CT scan looks normal, there is a little brain atrophy, but nothing more that we would expect in someone your age.” My mother’s tapping foot relaxed and she smiled. “But since you say that you’re having some problems with memory I would like to give you a little test. I’m going to give you three words, and then we are going to chat for a little while, and then I will ask you what the words are.”

My mother never shied away from a competition, and this was going to be the test of all tests. She sat up straight in her chair, put her hands firmly on her knees to stop their jittering and said “I am ready.” Dr. Osher gave her the words and attempted to have a conversation with her, but she was focused elsewhere. Her eyes were half closed and I could see her lips moving as she practiced the words over and over again. I was silently cheering her on, thinking “Come on Mom, just one more minute, stay focused, you can nail it, I know that you can.” I would have done anything to help her cheat. If I had a pencil and paper I would have distracted Dr. Osher as I slipped her the words.

And then the big reveal. Dr. Osher said, “All right Fan, do you remember the words?”

She looked him directly in the eyes and with perfect diction said “Yes, no problem, they are Vermont, basketball and yellow.”

These words are seared on my brain even to this day, and yes, she had nailed them. I was so proud of her. I felt like jumping up, high fiving her and doing a victory dance. But Dr. Osher had moved on to the next little test.

“Fan, here is a pencil and paper. Could you please draw me a clock face with the hands at quarter to ten?”

My mother stared at the paper blankly and then turned to look at me and gently shook her head. I feebly rose to her defense. “Dr. Osher, I don’t think that is a fair question for my mother, because she only has digital clocks in her house.”

“I’m sorry Doctor, I just can’t do that,” said my mother. It was the first time I had ever seen her just totally give up in the face of a challenge. And with that the other shoe quietly but unequivocally dropped. I now waited for Osher to say that awful word.

“Fan, you are obviously having some memory problems, but let’s not give it a name just now. I am going to give you some medication that may help a little bit, and you can come back and see me in a couple of months.”

What are you kidding me? Is this guy as big a coward as I am? But maybe he was right. Why label something as Alzheimer’s, a word whose synonyms might as well be humiliation and sorrow? With cancer, you can at least start off with hope. Patients are praised for their heroic battles, and physicians brim with options, armed with silver bullets and technologies with bells, whistles and blinking lights. With Alzheimer’s you’ve got nothing and the best you can hope for is calm acceptance. Not so different from when Charlie was first diagnosed with autism. I remember my mother telling me the pediatrician’s advice. “Just take Charlie home and love him, that’s the best you can do.” And that is what I tried to do for my mother for the next 7 years.