I recently finished reading the book, “Still Alice” by Lisa Genova. It is also now a nominated film, which is currently playing in theaters. It is a moving story, and is told through Alice’s voice, which gives one a very interesting perspective on what it may feel like to be living with dementia.
The following excerpt is my favorite part of the book. It is a speech that Alice gives at a dementia care conference. It is real, raw and powerful and relates how above all, those who live with dementia have a soul and spirit that transcends the ravage effects of this horrible disease.
“Good morning. My name is Dr. Alice Howland. I am not a neurologist or general practice physician, however. My doctorate is in psychology. I was a professor at Harvard University for 25 years. I taught courses in cognitive psychology, I did research in the field on 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 know I have dementia. So what I have to say today is timely.
We, in the early stages of Alzheimer’s are not 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. 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 I saw, and felt and heard, I’d be hard pressed to give you details. I’d guess a few things correctly. But I don’t really know. I don’t remember yesterday or the yesterday before that.
I have no control over which yesterdays I keep and which ones get deleted. This disease will not be bargained with. I often fear tomorrow. What if I wake up and I 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. I am a wife, mother, and friend. 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 can possibly do.
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.
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 did not live every second of it today. I will forget today, but that doesn’t mean that today did not matter.
I am 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” – Alice Howland
This is a beautiful song written for those with dementia…