Alzheimer's: the forgotten disease

September 16, 2010|By Laura L. Ebner

My mother's life has not been an easy one. At the age of 42, she was widowed with four teenage children after my father died suddenly. She worked three jobs so we could get to where we are today. Her life was not glamorous. She scrubbed other people's floors and waited tables. To me, she looked beautiful, despite of, or maybe because of, the strength I saw in her sweaty brow and bucket of cleaning supplies.

She volunteered at my elementary school and taught our class about art. She was my Girl Scout leader. She sang along in the car to Bonnie Raitt and John Cougar Mellencamp.

Now I'm 30 years old, and I find myself helping take care of her. When she was just 50, she began to suffer from dementia.

Six years into the onset of the disease, what is left? So much has been taken away, yet, love transcends life's trials. She is still beautiful with her bright blue eyes. I see love. I also see my mother standing in the middle of a room staring at the wall. What does she see? Did she forget what she was doing, how to do it, or did her brain just turn off? I see the tears in her eyes because when she tries to speak, she never can get the words out right. I see people look at her funny because she looks healthy. I see people tell her "I told you that five times already!"

I see my mother about to go downstairs to meet a new boyfriend of mine wearing her collared shirt and gym shoes but forgetting her pants. I help my mother dress. I wash her hair. This is the salon, mother. You deserve to be pampered. And she does. She takes her medications, but there are no effective treatments, certainly not a cure. We can only hope these pills slow the inevitable.

Our government currently lacks a national strategic plan for dealing with dementia. The current investment in Alzheimer's disease research by the National Institutes of Health is $457 million per year (about the cost of a single day in the Iraq/Afghanistan conflict). By comparison, the annual investment in cancer research is $6 billion, HIV/AIDS is $3 billion and heart disease is $2 billion. In these latter cases, it is clear that investments in research have begun to pay life-saving dividends. To succeed in stopping the impending epidemic of Alzheimer's disease, we must increase funding for research now.

Time is essential as the number of people with dementia is increasing. According to the Alzheimer's Association, there are currently 5.3 million Americans with Alzheimer's disease at an annual cost of $172 billion for their care. In Maryland alone, more than $2.5 billion was spent in 2009 to care for the 86,000 people living with the disease. As the average American lifespan increases, it is estimated that the number of those with Alzheimer's will balloon to 16 million at a cost of $1 trillion by the year 2050. Imagine the strain this will place on our Medicare and Medicaid systems.

In the meantime, caregivers carry the burden. I see my stepfather who, four years after marrying my mother, began the journey of caregiver for a person with dementia. He loves her so much, he once drove her to Chicago and back to Tennessee three times within a matter of days because she asked him to.

I often feel helpless, so when I heard about the Alzheimer's Association Breakthrough Ride, I jumped at the chance to participate. The Breakthrough Ride is 55 researchers cycling across the country. It started July 17 in San Francisco and will end September 21 on Capitol Hill in Washington. The goal is to build awareness and gather petition signatures to support the Alzheimer's Breakthrough Act (H.R. 3286/S. 1492), which will increase funding for Alzheimer's disease research to $2 billion per year.

I will be riding, alongside three other cyclists, the 200 mile journey from Philadelphia to Washington D.C. starting on Sunday and ending on World Alzheimer's Day, Tuesday September 21st.

On Tuesday, please come out and greet us as the Alzheimer's Breakthrough Ride culminates with 50 of our fellow riders joining us for the final stretch up Capitol Hill. We will arrive at Upper Senate Park at 10:30 a.m. for a brief presentation of the 100,000 petition signatures to members of Congress.

Dementia has taken so much from my mother, my family and millions of other families. Yet, true to form, I see glimpses of my mother fighting through. She still sings along to songs. She still laughs. She still loves. With that as my fuel, I ride on.

Dr. Laura L. Ebner is a third-year resident in psychiatry at Johns Hopkins Hospital. Her e-mail is lebner1@jhmi.edu.

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