WHY? WHEN? HOW?
Reprinted with permission from our friend Brian LeBlanc’s blog, Alzheimer’s: the Journey. I Have Alzheimer’s BUT, it Doesn’t Have Me!
When looking at diseases that affect the daily lives of millions of individuals each and every day, you’ll see some of the most common diseases already have a cure or a way to stop the progression.
- CORONARY ARTERY DISEASE
- HIV / AIDS
But, when you get to the more complicated diseases such as Alzheimer’s, that one seems to stand alone because, partly, it is one, if not THE, most misunderstood disease in the world today.
The reason being there is:
– no known way to prevent Alzheimer’s
– no way to, 100%, stop the progression of Alzheimer’s
– no way to stop delusion, disorientation or forgetfulness
– no way to stop the inability to create new memories
– no way to continue completing simple tasks or recognize common things
– no way to stop aggression, agitation, difficulty with self care
– no way to overcome irritability, personality changes or getting lost
– no way to stop the inability of jumbled speech
– no way to regain loss of appetite, sense of taste and smell
These things occur over time, however, as progression continues, all of the above can occur in a single day. Then the next day comes and the only recollection we have is what we’re told what happened the day before . . . for we cannot remember.
Living alone adds a whole other wrinkle to the Alzheimer’s equation, however, it is doable. I know a few others who, like me, are living alone and we are all doing just fine. It’s not always easy but nothing worth doing ever is. Being on my own gives me a feeling of independence and, it keeps me on my toes. For the most part, I know I am the only one who I can count on.
On the days I struggle, on what I call my “foggy days,” I reach out to my support system, or what I call, my Support Team. They are made up of family, friends and even some who are just acquaintances. They say they are “just calling” or “just stopping by” to say hello but I am still aware enough to know they are checking in to make sure I’m OK, especially when they bring me food. (They have seen me in person or have seen photos of me and notice the weight loss.) Sadly, the need of my Support Team has become more of a necessity than not and I am truly grateful they are around.
So, what do we do? Do we just stop living the best life we can? No!!! Giving Up or Giving In is NEVER an option.
What we continue doing is using our voices to educate, to advocate, to speak out against stigmatization. We put our pride aside and ask anyone and everyone to help us raise much needed funds to be used for the possibility of finding a cure or a way to stop the progression of this horrendous disease. We keep our hopes alive that the success the researchers are having with mice will turn into prevention and cures for humans.
Through all of this, we don’t stop loving and/or needing love to be returned. I believe love stays with us until the end. Although my Mother was not able to speak, she could still express love though her eyes, or through humming or La, La, La in the most beautiful, melodic voice I’ve ever heard.
So, I start my day and end my day acknowledging how fortunate I am for the many ways I am loved and cared for.
I’m lucky to have some very special people on my Support Team and I’m thankful that I still know what it feels like to be loved.
As an Alzheimer’s Advocate, I plan on continuing my Alzheimer’s Advocacy, educating, updating and sharing my personal journey to anyone wanting or willing to listen.
I don’t want our sons and daughters, or their children, or their children to have to live with this horrific disease known as Alzheimer’s!
Until Next Time,