When I was a kid, we didn’t say the word “breast”. If a woman had breast cancer, she had a “Lady Problem”, and it was nobody’s business. I could have never imagined that my twelve-year-old son would be able to talk about breast cancer as easily as he talks about Steeler’s football. He wears pink because it’s cool. His friend’s mom has breast cancer and he asks questions about how she found the lump, the details of her bilateral radical mastectomy, her prognosis, and if there’s a cure coming down the pike. He is interested, aware, and does not shy away from the issue on a personal or big-picture level. But put him in a room with someone who is confused, and he trembles from the heebie-jeebies.
The stigma of Alzheimer’s and other dementias is not unlike that of other epidemic diseases throughout history. Tuberculosis, cancer, AIDS… each fought for the same things we want for our Alzheimer’s patients: dignity, funding, compassion, a cure! Each disease has resulted in a subtle marginalization of these people and their caregivers similar to what we now see with the Alzheimer’s population. Although none of these diseases have been completely eradicated, there is usually some treatment that can provide at least a glimmer of hope- and hope can be very effective armor.
At this time, however, the best the Alzheimer’s medical community has to offer is a head tilt and a shoulder shrug, or maybe a stiff, one-armed hug from a physician with an exceptional bedside manner. But other than a sincere, “I’m sorry. There’s nothing we can do.”, millions of victims and caregivers are relegated to the job of rearranging deck chairs on the Titanic.
Day in and day out.
The thing that got breast cancer into the vernacular of mainstream America is the same thing that transformed the perception of HIV from a “gay disease” to an equally opportunistic public health threat.
It was a voice.
One voice became two, and two became ten thousand, and ten thousand became public school curriculum.
Caregivers, you have the voice. Your stories are more effective than any statistic or infograph. If you really want to shatter the Alzheimer’s disease social stigma, if you want to transform the platform for intelligent discourse from “Oh well, sorry for your luck,” to “Ok, this is the plan,” then we’re gonna need to rally the war cry.
What may sound like useless complaining to you is really the proverbial squeaky wheel in need of grease. The louder you squeak, the sooner my son and his buddies will be wearing purple shoe laces and running 5ks for a cure.
You’ve heard the call for advocacy. The plea to get involved. I know you are busy. I know you are exhausted. But consider this a therapeutic opportunity to vent your frustration and complain your little heart out to ears that will listen.
Who will listen? Your ELECTED congressman*. Your local Alzheimer’s Association. Your state department of health and human services. The Department of Aging. Facebook friends. Other caregivers.
*I felt so empowered the day I realized that my district representative is interested in meeting the needs of his constituents because he does genuinely care- but also because he wants to be re-elected. The more of his constituents that bring the same issues to the table, the more he has to pay attention. And the stories are the thing that really resonate with the political crowd. They like to have a cache of gut-wrenching, heart-bruising sucker punches that make them look really plugged into their communities. They are highly motivated to hear your struggles. You elected them to do that.