NEW YORK, April 24, 2017 /PRNewswire-USNewswire/ -- The following article was written by George Valentin, a volunteer for the Alzheimer's Association - NYC Chapter, working with care and support staff on Hispanic outreach programs in the community. He is a former caregiver for his mother and was an Alzheimer's Legislative Ambassador at the 2017 Alzheimer's Advocacy Forum in Washington, DC, held on Capitol Hill from March 27-29. Valentin resides in New York City.
I was the primary caregiver to my mother Pura Valentin, who passed away March 28, 2014 at the age of 83. The Alzheimer's Association estimates there are more than five million Americans living with Alzheimer's disease and more than 15 million Alzheimer's caregivers, so unfortunately, my caregiver story is not unique. Today, there are 390,000 New Yorkers with Alzheimer's disease. By 2025, approximately 460,000 New Yorkers will suffer from this disease - a 20% increase.
I was surprised to learn that African-Americans are about two times more likely, and Hispanics and Latinos are about one and one-half times more likely than whites to have Alzheimer's and other dementias.
My mother lived in Manhattan when she was first diagnosed with the disease in 2006. Since she lived alone, it took a while for me to see changes in my mother's behavior. When the diagnosis of Alzheimer's disease was confirmed, I did my best to visit regularly to help her to get organized for the coming week.
As the disease progressed, it became clear that she was having difficulty with the tasks of daily living: cooking, doing laundry and taking care of her personal needs. It became necessary for me to take over her finances, depositing social security checks and paying bills, and going to the pharmacy to pick up her medications. In spite of my reminders, it became clear that she was not taking her meds properly, putting her at risk for even more medical problems. Gradually, she became disoriented, even in her familiar neighborhood, and it became necessary to get her a MedicAlert bracelet.
As the primary caregiver, I was exhausted with the increasing level of care and attention her Alzheimer's symptoms required. I felt I was alone and I was angry about what was happening to my family. When I found the Alzheimer's Association, I took advantage of the information available on www.alz.org and called the 24/7 bilingual Helpline 800.272.3900 when I needed advice or felt overwhelmed.
I also started attending Alzheimer's caregiver support groups in 2012, when it became necessary to place my mother in a nursing home, where she would have round-the-clock supervision. Unfortunately, as her behavior became more erratic, the nursing home increased her medications to control her mood, but it was done to excess. When I visited, she couldn't speak or respond. I advocated for her to be placed in an Alzheimer's ward, where staff was trained to deal with these behaviors without overmedicating residents, and I was finally able to get her placed, but unfortunately she passed away less than two months later.
At an Alzheimer's Association community outreach event last year, I met Licet Valois, a bilingual social worker and program manager in the NYC Chapter office. She encouraged me to continue to stay involved, even after my mother passed away. I became an Alzheimer's Ambassador and took part in the 2017 Alzheimer's Advocacy Forum in Washington, DC specifically to advocate for the Palliative Care and Hospice Education and Training Act (PCHETA) and to support a $414 million increase for federal Alzheimer's research funding for FY2018. Because of the experience with my mother, I personally saw the need for health care workers to have a deeper understand of the stages of Alzheimer's disease as part of a palliative care plan and in hospice settings.
My mother's Alzheimer's disease was difficult, but I loved spending this time with her. We became closer than we had ever been as we shared this journey together. I have found purpose and value in the work I am continuing to do as a volunteer and Ambassador for the Alzheimer's Association. It is a very personal way to honor my mother's memory and hopefully make a difference for others facing this devastating disease. – George Valentin
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SOURCE Alzheimer’s Association - NYC Chapter