“I am a wife, mother, and friend, and soon to be grandmother. I still feel, understand, and am worthy of the love and joy in those relationships. I am still an active participant in society. My brain no longer works well, but I use my ears for unconditional listening, my shoulders for crying on, and my arms for hugging others with dementia. Through an early-stage support group, through the Dementia Advocacy and Support Network International, by talking to you today, I am helping others with dementia live better with dementia. I am not someone dying. I am someone living with Alzheimer’s. I want to do that as well as I possibly can.
“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. The earlier we are properly diagnosed, the earlier we can go on medication, with the hope of delaying progression and maintaining a footing on a plateau long enough to reap the benefits of a better treatment or cure soon. I still have hope for a cure, for me, for my friends with dementia, for my daughter who carries the same mutated gene. I may never be able to retrieve what I’ve already lost, but I can sustain what I have. I still have a lot.
“Please don’t look at our scarlet A’s and write us off. Look us in the eye, talk directly to us. Don’t panic or take it personally if we make mistakes, because we will. We will repeat ourselves, we will misplace things, and we will get lost. We will forget your name and what you said two minutes ago. We will also try our hardest to compensate for and overcome our cognitive losses.
“I encourage you to empower us, not limit us. If someone has a spinal cord injury, if someone has lost a limb or has a functional disability from a stroke, families and professionals work hard to rehabilitate that person, to find ways to cope and manage despite these losses. Work with us. Help us develop tools to function around our losses in memory, language, and cognition. Encourage involvement in support groups. We can help each other, both people with dementia and their caregivers, navigate through this Dr. Seuss land of neither here nor there.
“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. But just because I’ll forget it some tomorrow doesn’t mean that I didn’t live every second of it today. I will forget today, but that doesn’t mean that today didn’t matter.
“I’m no longer asked to lecture about language at universities and psychology conferences all over the world. But here I am before you today, giving what I hope is the most influential talk of my life. And I have Alzheimer’s disease.
“Thank you.”
She looked up from her speech for the first time since she began talking. She hadn’t dared to break eye contact with the words on the pages until she finished, for fear of losing her place. To her genuine surprise, the entire ballroom was standing, clapping. It was more than she had hoped for. She’d hoped for two simple things—not to lose the ability to read during the talk and to get through it without making a fool of herself.
She looked at the familiar faces in the front row and knew without a doubt that she had far exceeded those modest expectations. Cathy, Dan, and Dr. Davis beamed. Mary was dabbing her eyes with a handful of pink tissues. Anna clapped and smiled without once stopping to wipe the tears that streamed down her face. Tom clapped and cheered and looked like he could barely keep himself from running up to hug and congratulate her. She couldn’t wait to hug him, too.
John stood tall and unabashed in his lucky gray T-shirt, with an unmistakable love in his eyes and joy in his smile as he applauded her.
APRIL 2005
The energy required to write her speech, to deliver it well, and to shake hands and converse articulately with what seemed like hundreds of enthusiastic attendees at the Dementia Care Conference would have been enormous for someone without Alzheimer’s disease. For someone with Alzheimer’s, it was beyond enormous. She managed to function for some time afterward on the adrenaline high, the memory of the applause, and a renewed confidence in her inner status. She was Alice Howland, brave and remarkable hero.
But the high wasn’t sustainable, and the memory faded. She lost a little of her confidence and status when she brushed her teeth with moisturizer. She lost a bit more when she tried all morning to call John with the television remote control. She lost the last of it when her own unpleasant body odor informed her that she hadn’t bathed in days, but she couldn’t muster up the courage or knowledge she needed to step into the tub. She was Alice Howland, Alzheimer’s victim.
Her energy depleted with no reserve to draw upon, her euphoria waned, and the memory of her victory and confidence stolen, she suffered under an overwhelming, exhausting heaviness. She slept late and stayed in bed hours after waking. She sat on her couch and cried without specific reason. No amount of sleep or crying replenished her.
John woke her from a dead sleep and dressed her. She let him. He didn’t tell her to brush her hair or teeth. She didn’t care. He hurried her into the car. She leaned her forehead against the cold window. The world outside looked bluish gray. She didn’t know where they were going. She felt too indifferent to ask.
John pulled into a parking garage. They got out and entered a building through a door in the garage. The white fluorescent lighting hurt her eyes. The wide hallways, the elevators, the signs on the walls: RADIOLOGY, SURGERY, OBSTETRICS, NEUROLOGY. Neurology.
They entered a room. Instead of the waiting room she expected to see, she saw a woman sleeping in a bed. She had swollen, closed eyes, and IV tubing taped to her hand.
“What’s wrong with her?” whispered Alice.
“Nothing, she’s just tired,” said John.
“She looks terrible.”
“Shh, you don’t want her to hear that.”
The room didn’t look like a hospital room. It contained another bed, smaller and unmade, next to the one the woman was sleeping in, a large television in the corner, a lovely vase of yellow and pink flowers on a table, and hardwood floors. Maybe this wasn’t a hospital. It could be a hotel. But then, why would the woman have that tube in her hand?
An attractive young man came in with a tray of coffee. Maybe he’s her doctor. He wore a Red Sox hat, jeans, and a Yale T-shirt. Maybe he’s room service.
“Congratulations,” whispered John.
“Thanks. You just missed Tom. He’ll be back this afternoon. Here, I got everyone coffee and a tea for Alice. I’ll go get the babies.”
The young man knew her name.
The young man returned rolling a cart carrying two clear plastic, rectangular tubs. Each tub contained a tiny baby, their bodies entirely swaddled in white blankets and the tops of their heads covered in white hats, so that only their faces showed.
“I’m going to wake her. She wouldn’t want to sleep through you meeting them,” said the young man. “Honey, wake up, we have visitors.”
The woman woke up reluctantly, but when she saw Alice and John, an excitement entered her tired eyes and enlivened her. She smiled, and her face seemed to snap into place. Oh my, that’s Anna!