Why I Walk to End Alzheimers
Thank you for being here this morning to support a special cause close to our hearts. 6 years ago, I came to this walk by myself at the last minute and sat in the audience like you. My mom was diagnosed with dementia and I was struggling to understand and cope especially with her cognitive decline.
Essentially I was on that journey alone 24/7 with no family present. Little did I know that last minute decision would have a profound impact on my life. The love and support I needed at that time was here at the walk because no one understood what I was experiencing and internalizing.
Caregiving is tough. It was a challenge for me working full time, managing my team and being active in this community while also caring for my mom. This disease gradually robbed my mom of her mobility and cognitive state of mind over time. The sad thing is my mom most likely had early onset Alzheimer’s but due to lack of knowledge and awareness those symptoms were treated as mental health issues. The hallucinations, agitation were the most challenging aspects of care to deal with as well as finding support from my family and family friends and respite relief.
I must commend the Alzheimer’s Association for having the resources available to us and this is why I continue to advocate and support this walk.The Alzheimer’s Association is the family i craved and needed. If you have not already, please save that 800 # 800-272-3900. I called that number a few times and the support I received was what I needed at that time and helped me through my caregiving journey even after midnight. I remember my first call lasted nearly 2 hours and they did not get off the phone until I received the PDF files for hallucinations via email and promptly called me back the next day.
Last year around this time, I was barely surviving and my health started to decline- gaining weight, extra blood pressure medicine, elevated heart rate and anxiety. My mom’s cognitive state was rapidly deteriorating, Alzheimer’s dementia was gradually robbing my mom’s ability to function. Just last October we started home hospice in which I still had hope that she would eat and be able to sit up in her bed, understand a few commands or even walk a few steps. I could barely communicate with my mom. Towards the end of November last year the pain was excruciating and she kept asking me “Am I dying” or help me “i am dying”. It was the first time as a caregiver I was helpless witnessing firsthand her brain shutting down her body. We transfered my mom to inpatient hospice as she transitioned to the next phase and sadly she passed away December 5, 2021. She essentially stopped communicating on November 26th which happened to be my dad’s 23 death anniversary.
The pain my mom experienced is forever etched in my memory. The past 10 months I have been lost in my own world grieving; however, her voice and others affected by this disease give me the courage to continue to advocate at the local, state and federal levels. I encourage you to continue to be the voice for your loved one. The love and energy of this Orlando Alzheimer’s community is what keeps us going to honor the memory of our loved ones.
This morning Peggy, Robin and I will walk in memory of my mom carrying a purple flower. I never thought in a short span of five years I would carry a purple flower but it is the purple flowers that motivates us to advocate and raise our voices to find a cure.