John shifted in his seat and jiggled his leg.
“Thank you, Alice, I’ll add that website to our standard packet of information. How about you, John? Have you yet talked with our social worker here or gone to any of the caregivers’ support group meetings?”
“No, I haven’t. I’ve had coffee a couple of times with the spouses of her support group people, but otherwise, no.”
“You might want to consider getting some support yourself. You’re not the one with the disease, but you’re living with it, too, by living with Alice, and it’s hard on the caregivers. I see the toll it takes every day with the family members who come in. There’s Denise Daddario, the social worker, here and the MGH Caregivers’ Support Group, and I know that the Massachusetts Alzheimer’s Association has many local caregiver groups. The resources are there for you, so don’t hesitate if you need them.”
“All right.”
“Speaking of the Alzheimer’s Association, Alice, I just received their program for the annual Dementia Care Conference, and I see you’re giving the opening plenary presentation,” said Dr. Davis.
The Dementia Care Conference was a national meeting for professionals involved in the care of people with dementia and their families. Neurologists, general practice physicians, geriatric physicians, neuropsychologists, nurses, and social workers all gathered in one place to exchange information on approaches to diagnosis, treatment, and patient care. It sounded similar to Alice’s support group and DASNI, but bigger and for those without dementia. This year’s meeting was to be held next month in Boston.
“Yes,” said Alice. “I meant to ask, will you be there?”
“I will, I’ll be sure to be in the front row. You know, they’ve never asked me to give a plenary presentation,” said Dr. Davis. “You’re a brave and remarkable woman, Alice.”
His compliment, genuine and not patronizing, was just the boost her ego needed after having been so ruthlessly pummeled by so many tests today. John spun his ring. He looked at her with tears in his eyes and a clenched smile that confused her.
MARCH 2005
Alice stood at the podium with her typed speech in her hand and looked out at the people seated in the hotel’s grand ballroom. She used to be able to eyeball an audience and guess with an almost psychic accuracy the number of people in attendance. It was a skill she no longer possessed. There were a lot of people. The organizer, whatever her name was, had told her that over seven hundred people were registered for the conference. Alice had given many talks to audiences that size and larger. The people in her audiences past had included distinguished Ivy League faculty, Nobel Prize winners, and the world’s thought leaders in psychology and language.
Today, John sat in the front row. He kept looking back over his shoulder as he repeatedly wrung his program into a tight tube. She hadn’t noticed until just now that he was wearing his lucky gray T-shirt. He usually reserved it for only his most critical lab result days. She smiled at his superstitious gesture.
Anna, Charlie, and Tom sat next to him, talking to one another. A few seats down sat Mary, Cathy, and Dan with their husbands and wife. Positioned front and center, Dr. Davis sat ready with his pen and notebook. Beyond them sat a sea of health professionals dedicated to the care of people with dementia. This might not be her biggest or most prestigious audience, but of all the talks she’d given in her life, she hoped this one would have the most powerful impact.
She ran her fingers back and forth across the smooth, gemmed wings of her butterfly necklace, which sat, as if perched, on the knobby tip of her sternum. She cleared her throat. She took a sip of water. She touched the butterfly wings one more time, for luck. Today’s a special occasion, Mom.
“Good morning. My name is Dr. Alice Howland. I’m not a neurologist or general practice physician, however. My doctorate is in psychology. I was a professor at Harvard University for twenty-five years. I taught courses in cognitive psychology, I did research in the field of linguistics, and I lectured all over the world.
“I am not here today, however, to talk to you as an expert in psychology or language. I’m here today to talk to you as an expert in Alzheimer’s disease. I don’t treat patients, run clinical trials, study mutations in DNA, or counsel patients and their families. I am an expert in this subject because, just over a year ago, I was diagnosed with early-onset Alzheimer’s disease.
“I’m honored to have this opportunity to talk with you today, to hopefully lend some insight into what it’s like to live with dementia. Soon, although I’ll still know what it is like, I’ll be unable to express it to you. And too soon after that, I’ll no longer even know I have dementia. So what I have to say today is timely.
“We, in the early stages of Alzheimer’s, are not yet utterly incompetent. We are not without language or opinions that matter or extended periods of lucidity. Yet we are not competent enough to be trusted with many of the demands and responsibilities of our former lives. We feel like we are neither here nor there, like some crazy Dr. Seuss character in a bizarre land. It’s a very lonely and frustrating place to be.
“I no longer work at Harvard. I no longer read and write research articles or books. My reality is completely different from what it was not long ago. And it is distorted. The neural pathways I use to try to understand what you are saying, what I am thinking, and what is happening around me are gummed up with amyloid. I struggle to find the words I want to say and often hear myself saying the wrong ones. I can’t confidently judge spatial distances, which means I drop things and fall down a lot and can get lost two blocks from my home. And my short-term memory is hanging on by a couple of frayed threads.
“I’m losing my yesterdays. If you ask me what I did yesterday, what happened, what I saw and felt and heard, I’d be hard-pressed to give you details. I might guess a few things correctly. I’m an excellent guesser. But I don’t really know. I don’t remember yesterday or the yesterday before that.
“And I have no control over which yesterdays I keep and which ones get deleted. This disease will not be bargained with. I can’t offer it the names of the United States presidents in exchange for the names of my children. I can’t give it the names of the state capitals and keep the memories of my husband.
“I often fear tomorrow. What if I wake up and don’t know who my husband is? What if I don’t know where I am or recognize myself in the mirror? When will I no longer be me? Is the part of my brain that’s responsible for my unique ‘meness’ vulnerable to this disease? Or is my identity something that transcends neurons, proteins, and defective molecules of DNA? Is my soul and spirit immune to the ravages of Alzheimer’s? I believe it is.
“Being diagnosed with Alzheimer’s is like being branded with a scarlet A. This is now who I am, someone with dementia. This was how I would, for a time, define myself and how others continue to define me. But I am not what I say or what I do or what I remember. I am fundamentally more than that.