Spotlight - Krismely Santana

Each week we will be picking members to spotlight to tell their Alzheimer's story and why they are running in this year's New York City marathon. Check in each day for new updates on who will be spotlighted and get to know your teammates...(each person is picked at random)

In 2003, at the age of 52 my mother, Victoria Santana, was diagnosed with early-onset Alzheimer’s disease. Her world soon started slipping away, while our world started turning upside down. I started noticing that she wasn’t able to carry a conversation and that she would ask the same questions over and over again.  Then, she started getting lost in the neighborhood streets. We had to call family members, friends and our local police department to help us find her.  I was in denial, I couldn’t believe what was happening to my mom as I saw her slipping away.  

Over the years, things kept getting worse. Today, she lacks the capacity to manage her personal, financial and medical affairs. She has been living with Alzheimer’s  for over 10 years and it has been extremely painful to everyone who knew the women she once was.  This disease is irreversible  and finding out someone you love has Alzheimer’s is stressful, frightening and overwhelming. I was appointed her guardian and took care of her for over 2 years. While her level of independence deteriorated, it was much more challenging to care for her needs.  I helped her with every daily activity, including eating, bathing, dental care and using the bathroom. The pain I went through on a day to day basis watching her deteriorate mentally and physically is indescribable.  

This disease has changed my family dynamics and has taken my mother away from all of us.  She is physically there, but unable to enjoy her surroundings. She is unable to recognize her loved ones.  There is a blank stare in her eyes, a feeling of loss, within herself unable to put her thoughts together, unable to recognize the person in front of her, unable to know where she is or who she is with.  She is also unable to tell us how she feels, what she wants, and what she needs. Therefore Today, I decided to take ACTION by joining the Alzheimer’s team and honoring her by running the NYC marathon in her name. I want to help reclaim the future for millions by raising awareness and funds for Alzheimer research, care and support.

Today, I need your support! YES, I need your support. Please make a donation to help the Alzheimer's Association advance research into prevention, treatments and a cure for  this alarming disease.  So that future generations will not have to go through so much pain, anguish, and despair. I want my daughter and son  to live in a world free of Alzheimer’s.  A disease that has been affecting my family for generations But it could end with you and me.  

A POEM FOR MOM - Writing by : Kris Santana

ALL IN HER EYES 

There I was, looking deep into her eyes.  A feeling of emptiness, belonging and despair

A life forgotten, a life lost, a life full of dreams.  

How could I not know, not know her pain, her dreams, her love

I see an ocean, water , the sun I get lost all in her eyes

What is she trying to tell me

Now I see a well, I look deeper, I jump inside

to feel the coldness of the water 

I am shivering, shaking, frightened, alone and scared. 

Close my eyes once again and there I was  

looking, feeling and seeing all her pain

Looking forward to meeting you soon.