Welcome to my page!
Did you know that over 5 million people in the U.S. suffer from Alzheimer's Dementia? In fact, Alzheimer's is the 6th leading cause of death in the U.S. and the 5th leading cause for people aged 65 and older. These numbers do not even reflect the number of individuals affected by other related forms of dementia. In fact, another study I found suggested that nearly 36 million people worldwide suffer from some form of dementia. That number is estimated to double every 20 years.
In March of 2012, my dear mom was diagnosed with a rare from of dementia, called "Semantic Dementia". It differs from Alzheimer's and affects the frontotemporal lobes of the brain. (To read my full story on her diagnosis, click on the beginning). When she was first diagnosed with this illness, I had no idea what it meant. I had never known anyone else with this disease and I had many questions that I sought answers for. I began my search for answers on the internet. To my dismay, there was not a lot of information on this particular form of dementia. Every link led me to the same 2 or 3 websites. I tried searching for a support group in my area for people with frontotemporal lobe dementia, but my search came up empty. I discovered that this form of dementia is too uncommon to find a support group (this specific) closeby.
I eventually stumbled onto a support group for caregivers of dementia (all forms of dementia, not just semantic) which is held right down the street from my house. Although all my questions weren't answered about her exact disease, it became a good resource for me in preparing for the future with my mom. Through this group, in a round-about way, I was led to a book and an online support group for caregivers of frontotemporal dementia. I can't even begin to tell you how much these resources have helped me. It is difficult to read about what is to come and hear the heartbreaking stories from others, but it has helped me to prepare (emotionally, physically, etc) for what is to come with my mom.
I began this blog, shortly after my mom's diagnosis, as a means of therapy to express how I was feeling and what we were experiencing. Eventually, I opened it up to close friends and family members. Initially, I felt like there was something I needed to do to help this situation I found myself in. Between the frustration with my lack of resources (to learn about her disease and communicate with others experiencing the same thing) and the sense of helplessness to change her outcome, I began pondering what more I could do to be proactive in my mom's care. With the feelings of despair and negativity that I was left with, I felt the need to find something positive that I could make of this. And so my "blog vision" began. To read more about how that vision began, click here.
My mission with this blog is simple. I want to help others. I want to help raise awareness about dementia, particularly the forms that are lesser known (particularly frontotemporal lobe dementia). I want to help people to understand and gain empathy for those who suffer from this illness, and not only the sufferers but for the caregivers of these people as well. I want to provide resources and direction for people who find themselves in a similar situation. I hope to provide these things by sharing our stories with you. This blog will give you a close look at the behaviors and hardships of dealing with the disease. You may cry. At times, you may laugh (believe it or not). Through it all, I hope that you can learn and become a better person for having read it.