Still AliceBook - 2009
From the critics
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At 50, she was a fast runner through the traffic at about 9 minute mile pace for the 5 mile route:
When starting from her house on Poplar Street, she invariably followed the same route—down Massachusetts Avenue, through Harvard Square to Memorial Drive, along the Charles River to the Harvard Bridge over by MIT, and back—a little over five miles, a forty-five-minute round trip. She had long been attracted to the idea of running in the Boston Marathon but each year decided that she realistically didn’t have the time to train for that kind of distance. Maybe someday she would. In excellent physical condition for a woman her age, she imagined running strong well into her sixties.
From Alice's opening plenary presentation in the annual Dementia Care Conference:
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.
And I have no control over which yesterdays I keep and which ones get deleted.
I often fear tomorrow. What if I wake up and don’t know who my husband is?
Being diagnosed with Alzheimer’s is like being branded with a scarlet A.
“I’d like to encourage earlier diagnosis, for physicians not to assume that people in their forties and fifties experiencing memory and cognition problems are depressed or stressed or menopausal.
“My yesterdays are disappearing, and my tomorrows are uncertain, so what do I live for? I live for each day. I live in the moment. Some tomorrow soon, I’ll forget that I stood before you and gave this speech.
In examining disease, we gain wisdom about anatomy and physiology and biology. In examining the person with disease, we gain wisdom about life.
she wanted to live to hold Anna's baby and know it was her grandchild. She wanted to see Lydia act in something she was proud of. She wanted to see Tom fall in love. She wanted one more sabbatical year with John. She wanted to read every book she could before she could no longer read. She laughed a little, surprised at what she'd just revealed about herself. Nowhere in that list was anything about linguistics, teaching, or Harvard.
She wished she had cancer instead. She'd trade Alzheimer's for cancer in a heartbeat....With cancer, she'd have something to fight. There was surgery, radiation, and chemotherapy. There was the chance that she could win.
But will I always love her? Does my love for her reside in my head or my heart? ... The mother in her believed that the love she had for her daughter was safe from the mayhem of her mind, because it lived in her heart.
She remembered being six or seven and crying over the fates of the butterflies in her yard after learning that they lived for only a few days. Her mother had comforted her and told her not to be sad for the butterflies, that just because their lives were short didn't mean they were tragic. Watching them flying in the warm sun among the daisies in their garden, her mother had said to her, see, they have a beautiful life.
“You're so beautiful," said Alice. "I'm afraid of looking at you and not knowing who you are."
"I think that even if you don't know who I am someday, you'll still know that I love you."
"What if I see you, and I don't know that you're my daughter, and I don't know that you love me?"
"Then, I'll tell you that I do, and you'll believe me.”
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Alice's ordeal can be summed up in her plenary presentation in the Dementia Care Conference. Here is an excerpt: “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...
Alice Howland is an esteemed psychology professor at Harvard, living a comfortable life in Cambridge with her husband, John, arguing about the usual when the first ysmptoms of Alzheimer's begin to emerge. First, Alice can't find her Blackberry, then she becomes hopelessly disoriented in her own town. Alice is shocked to be diagnosed with early onset Alzheimer's. Her life begins to unravel. She lostes track of rooms in her home, resigns from Harvard and eventually cannot recognize her own childeren. the frutual facts of Alzheimer's are heartbreaking.
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