Why I am an Alzheimer's Advocate

Hey my name is Emmy, I am 24 years old and an advocate for Alzheimer’s awareness. I am passionate about the wellbeing of those suffering from Alzheimer's disease as well as their family and loved ones who are affected by the disease in their day to day. To me, being an advocate for Alzheimer’s does not always mean pounding down the door of your representative, asking for policy change- although hey, why not give that a try too? For me, I strive to improve the quality of care and quality of life for everyone suffering from Alzheimer's through education and awareness. On a daily basis I use my own voice to stand up for those who are losing theirs.

My grandfather on my Dad's side passed away when I was young, after years struggling with Alzheimer's. I always knew how horrible the disease was from watching him as a little girl, but I never knew him when he was young and healthy so I had trouble translating my memories into meaningful lessons on the true effects of Alzheimer’s. In fact, I never fully understood the grander impact the disease until my own Mother was diagnosed at 62 years old.

Here are a couple real life examples that I’ve seen in regards to things that each and everyone of us can do to support those living with Alzheimer’s…

During the early years after diagnoses, my Mother was in CVS picking up a prescription for her memory medication- a common thing anyone with an early stage Alzheimer's might do. Obviously she looks like any other normal woman walking around the store, however, she might interact a bit differently than she used to. A checkout woman at the prescription counter got frustrated with my Mother, who I am sure was holding up the line with her confusion at payment, and instead of maybe taking her aside and offering to help her, she brought my Mom to the point of tears with her impatience. From this story I remember that compassion and patience goes a long way with every individual you run into in your day to day. You do not know who you are speaking to or what their story is, and especially for someone who could read her prescription and know why she was there, I expect more.

Another example I think of often happened more recently, in a later stage of the progression in the disease, a nurse on the phone needed to speak to my mom to get all of her information, refusing to simply listen to my Dad who is her power of attorney. In a late stage of Alzheimer's, asking someone to spell their name, to state their birthday, to state their billing address is just plain mean. Can you imagine if you woke up one day and had no idea the answers to any of those questions?!? It is scary and a day ruiner to remind my Mother than she no longer is able to recall this simple personal information. My Dad was able to diffuse the situation by writing out everything for her and she could read it off over the phone. Nonetheless, it was a situation of confusion and agitated that could have easily been avoided had the nurse put a bit more thoughtfulness into her job.

My point is not to call out or embarrass these individuals, but to inspire every person reading this to go about their day with an inch more care, love, and patience. By doing that, we are all advocates for each other, standing up for those living with Alzheimer’s as well as numerous other disabilities.