Thank you Chairman Collins, Ranking Member Casey, and members of the Committee for this opportunity to testify today on the impact of Alzheimer's disease on my family and families across the country.
As I look around me this morning, I'm grateful to see so many people gathered in this room. But a scary statistic tells us that one or more of us, and certainly one or more of our children, will develop Alzheimer's disease. There is no known cure, and the symptoms are devastating; every memory of life is wiped away, including forgetting how to breathe and how to swallow. To date, there are no survivors of Alzheimer's. Unlike cancer and AIDS, many individuals living with Alzheimer's, like my mother, can't speak for themselves, because they reach a point in the disease where they are no longer able to speak out about it. Alzheimer's is an insidious, cowardly disease that needs all of our voices, the voices of families, of our elected officials, and the voices of our nation to galvanize and find a cure. It is my prayer that with your help, advocacy, and funding, this generation is able to celebrate the first survivor of Alzheimer's disease.
Every 65 seconds someone in the United State develops Alzheimer's disease, and that number will nearly double by 2050. According to the
Alzheimer's disease first came into my life in 2011 when my strong, witty, vibrant mother was diagnosed. As a daughter and a caregiver, I hope my story will bring awareness to this horrible disease.
Let me tell you a little bit about my mom,
One of the first times I noticed my mom having memory problems was around 2005 when we were traveling to
As we all know too well, Alzheimer's disease causes memories to evaporate. One minute a person can recall a detail of their favorite novel, the function of a spoon, or the fact that tulips bloom in spring, and the next minute it has disappeared. Eventually the names, and finally faces of loved ones, are also memories that have evaporated, and soon, the meaning of their lives evaporates. So it is for my mother.
Today 50 million people worldwide suffer this evaporation. Rich, fertile minds, PhDs and scientists, plumbers and dancers, Presidents and senators, doctors, inventors, teachers and firemen, the disease doesn't discriminate. These people are now deprived of the validation of the memory of their lives. They don't remember who they were. They don't know who they are, they forget how to talk, how to walk, how to arrange flowers. Watching my mom forget herself and her many contributions to life -- it pisses me off. So my siblings and I do what my father taught us to do -- we "pull ourselves up by the bootstraps" -- never mind that we wear high heels. We know what he meant!
As a family, we focus on her care, and on maintaining her dignity. We've sold my mother's home in anticipation of the mounting costs of caregiving. It was one of the hardest decisions that we've had to make so far; the loss of her home is something that we all felt, with such a dread and sense of helplessness that it has somewhat devastated us. I keep reminding myself we are doing the best we can, with the tools and knowledge that we have. We want things to be as they were before but the disease continues to march forward. Our funds are limited, these are uncharted waters, and we've had to adjust, to prepare for the unknown, to calculate all possibilities and most importantly ensure her comfort, care, and safety. My mom now lives in a smaller house, located on a lake with birds and familiar neighbors close by. It is near medical resources and a church, as well as my sisters who shower her with love and visits, and caregivers who take wonderful, dutiful and exacting care of her as she ages with Alzheimer's. But we don't know what the future holds, and we are scared. Will we eventually have to give up our own jobs to care for my mother? What will happen when the money runs out?
Did you know eighty three percent of help provided to older adults in
It infuriates me that this is how Alzheimer's becomes a stealthy thief, robbing families of their finances and security, and forcing its victims to live only in the moment. For my mother there is only the present, with no connection to her past, without the rich tapestry for her life to tell her story. No dimension, just dementia. I see her concentrate, I see her try to speak the right words, I see her try to connect the memory to words and through it all, I see her eyes smile, but it seems to me, the smile is a little bit wounded these days.
There is no medicine yet, no surgery yet to grasp the dangling thread of memory, to rethread the needle and weave it back into her tapestry and connect thoughts to memory and life experience, to allow her to remember her life. Instead, as the patient and family wait impatiently, more threads unravel, more dangling thoughts, the tapestry of her life slowly disintegrates, the picture is blurred and memory is lost.
This disease has no dignity, and yet, my mother has somehow managed to keep hers. And even as the pitch-black darkness of this hideous disease advances, the core of my mom -- her elegance and humor and love of family and God -- had remained the same. I think of it as her light that cannot be extinguished.
As I watch my mom decline, I find myself worrying about me or my children having Alzheimer's. My mom always told me to repurpose my pain, to do something useful, so I read a lot about the disease and ways to reduce my risk -- things like exercising, a healthier diet, and sleeping better.
Alzheimer's has changed me. I've become an outspoken advocate. I've done campaigns to raise awareness of the early signs of dementia and Alzheimer's. The more I learn about the disease, the more motivated I am to make sure that people are educated about it.
It is so important for people and doctors to be aware of the early signs of Alzheimer's disease and other dementias. In 2015, I partnered with the Administration for Community Living at the
Last month, I worked with
As scientists continue to search for a way to prevent, cure or slow the progression of Alzheimer's through medical research, public health can also play an important role in promoting brain health and cognitive function, and reducing the risk of cognitive decline. It is imperative that we as a country invest in a nationwide Alzheimer's public health response to achieve a higher quality of life for those living with the disease and their caregivers.
One of the ways we can make that investment is through legislation introduced by Chairman Collins and Senator
Every little act we do, does make a difference. Caregivers always feel guilty they can't do enough, but I want caregivers to know that we have to be gentle with ourselves. Being in the moment with the person, knowing they have an ability to recognize the familiar even if they can't verbalize it, is comforting. Once my mother said to me: "I don't know who you are, but I know you are important to me. When you came into the room, your face made me feel happy." I've learned to say to my mom, "It's okay if you don't remember me, I will always remember you."
There is nothing good about Alzheimer's -- it is not a disease where one can make lemonade from lemons. When I think of my mom, I think of the beauty of her Ikebana, her delicate creations with lines for shin, soe and hikae, and how she was before. I don't want Alzheimer's to be her legacy. And yet, through it all, my beautiful mother has managed to teach me, even through the destruction of her capabilities and creativity, that there is such a thing as an indestructible spirit. It is because of that indestructible spirit that I know she would want to help others by raising awareness about this horrible disease. Through a daughter's eye, I share story in hopes of keeping her legacy alive.
The battle against Alzheimer's is a battle we must win. If we don't, it will cripple our nation. I want to close with some words from my Navy Captain father who was fond of quoting
We must pull ourselves up by the bootstraps. We must do our duty to the American people and fund and fight this battle, and we will win.
Thank you for your time.
Read this original document at: https://www.aging.senate.gov/download/?id=C1FAA80B-60ED-42F1-A050-8FE5F8C24695&download=1
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