Most people in my peer group (early, early, VERY early 40s!) tend to think of Alzheimer’s disease as something exclusive to old people. I used to have this view, conjuring up images of an elderly man with a walker looking confused when a grandson bounded up to him, or in more recent years an eighty-something Ronald Reagan being tended to lovingly by Nancy as he entered the advanced stages of the disease.
Unfortunately, my understanding of Alzheimer’s has been forced to grow quickly in the last few years after my mom was diagnosed with Alzheimer’s at age 63. We were shocked…we thought she was just having headaches that caused a little bit of forgetfulness. When we thought of the road ahead, it was almost unbearable.
My sister and I began to imagine watching mom become unable to do the everyday things in life, such as driving or cooking. We began wondering how many years it will be until she didn’t remember or recognize her daughters or grandkids. We shuddered at the fact that my dad, he of the “breadwinner” generation who has never cooked, cleaned or otherwise participated in the domestic side of life, would become the primary caregiver in the family. We were, literally, freaking out, until my sister found the Alzheimer’s Association of San Diego.
The Alzheimer’s Association has been our rock throughout this experience. From the first support group we attended, walking wide-eyed into a stark conference room not knowing what to expect, to the weekly groups my mom attends, to the caregiver resources they provide to my dad, we could not have pulled together as a support team for mom without this fantastic organization. They provide so many low-or-no-cost resources that will give you the tools, and more importantly, the hope that you can indeed live a relatively normal life even as you support your loved one.
The first thing they will tell you at Alzheimer’s Association is that you are not alone. There are 5.4 million Americans with Alzheimer’s, and many of those are under age 65. In fact, people are getting diagnosed younger and younger, and someone in America is diagnosed with Alzheimer’s every 69 seconds. Celebrities like Seth Rogen, Bradley Cooper and Molly Sims have been affected and joined the fight, which I believe is winnable with more attention and resources going toward finding a cure.
If you are just getting involved in the fight against Alzheimer’s, take advantage of Alzheimer’s Association resources such as their Clinical Trial listings. There are many Clinical Trials going on throughout the country, and particularly in California. You can apply for your loved one to participate by visiting this link: http://www.alz.org/research/clinical_trials/find_clinical_trials_trialmatch.asp
You will also want to read books like Still Alice and The 36 Hour Day . These will help to put the road ahead of you in perspective, and while they can be difficult to get through, they are essential in beginning your new role as a support person.
I have long had visions of my mom growing older immersed in all of the things she loves – visiting our family cabin, introducing my daughter to the family tradition of Black Friday shopping, scrapbooking, collecting dolls, and continuing to take cruises all around the world with my dad. Alzheimer’s has robbed much of this from her, and we are determined to fight back. We enjoy small victories, like the Walk To End Alzheimer’s this year, where my mom was invited on stage and we were recognized as the #2 fundraising team in the county.
If you have a loved one that is living with this awful disease, know this – it stinks. There’s nothing that will make watching your loved one slowly slip away any easier. I guess the best you can hope for is to make it more manageable, and to increase your circle of support so you know you are not alone. The Alzheimer’s Association has been that support for my family, and I would encourage you to let them be that support for you as well. Please get involved with them and check out their programs. Learn all you can about Alzheimer’s, because based on the statistics, it will affect someone you love sometime in the future, if it hasn’t already.
Written by Cyndi Smith Darlington