African Americans and Latinos are more likely than whites to have Alzheimer's disease and other dementias. Yet minorities suffering with Alzheimer's disease and their families are all but ignored when the media discusses the disease.
We are invisible.
We are rarely included in uplifting profiles and stories that can serve to educate and empower caregivers of color. For Latino families, where language and culture can be a hindrance not only to early diagnosis, but also in finding an avenue to care, this education is key. We desperately need information, a road map to navigate this deadly illness, and the knowledge we are not alone on a journey that it is ripping our mothers, fathers and grandparents away from us.
My mother was recently diagnosed with Alzheimer's disease after years of decline that I did not connect with the disease. I had no idea that Latinos are one half time more likely than whites to develop the condition and African Americans are two times more likely. That's partly because our stories are not really told in the mainstream media. There are no front-page stories or TV news magazine pieces.
Lower levels of education and income delay the crucial diagnosis until much later stages, which only makes it harder for families.
My mom is 83. She is an immigrant from the Dominican Republic. She has an eighth-grade education. Her decline was slow and began with judgment issues. All her life, she's been something of a dramatic, so signs of her judgment slipping didn't raise flags right away for me, our relatives or her doctors.
When I was a child, she would take my sister and me to la botanica, a shop in Latino communities that specialize in herbs and spiritual items and stock up on incense and lucky spray so she could have good luck to "hit the numbers." Sometimes, it worked, and she would make $10 or $20. But it costs hundreds of dollars for every win. She is also a devout Catholic. So if an authority figure tells her something, she believes it.
When she was in her 70s, by now a widow for several years, she got involved with psychics who sent letters in the mail that claimed you will receive millions of dollars if you send them $20 for a lucky coin or stones. She also got involved with sweepstakes scammers who asked for $20 and promised to send millions.
By the time I found this out, my mother had sent them all of her meager savings. She maxed out her credit cards because of loans she gave these thieves, and her checking account was severely overdrawn. My mom apologized, gave me power of attorney, and said she learned her lesson.
But she had a disease. And I didn't know it.
The problems never ended. Finally, I was advised by a social worker I consulted that my mother needed to see a neurologist. Our social worker suspected my mother had Alzheimer's Disease. This launched me into an odyssey of the type of healthcare available to poor people in the Bronx, where my mother lives.
The neurologist who relayed her first diagnosis of Frontal Lobe Dementia, an extremely serious form of dementia that affects judgment, told me to "Google" the answers to any question I asked. I was angry, frustrated, and confused. We'd been sitting in a waiting room in the Bronx for an hour, in a room filled with people who were struggling, who barely spoke English, who needed help, only to have a smug doctor tell me to Google my mother's serious condition and devise a plan for her. He even wrote out a few URLs to get me started.
Three months later, the hallucinations began. They are intense and scary. My mom sleeps with her pocketbook; she barricades herself in her room because a "naked boy" is running all over her apartment eating her food and stealing her keys and glasses.
I finally found a good neurologist for her. I decided to go for the best and ignore what was convenient. In this case, it meant going to Westchester County, a suburb where the white people go, and there I found the most caring and compassionate neurologist.
Now I am being advised to find a nursing home. The problem is my mom, like many low-income minorities, doesn't have the $6,000 a month it costs to live in a home And the best of these places do not accept Medicaid. My mom is caught between just a hair too much social security and pension to qualify for Medicaid and no long term-care health insurance. So now we have to work within the labyrinth of Medicaid to figure something out, which adds more delays.
Meanwhile, her rapid decline continues. She is forgetting her English, but any conversation with her in any language is getting increasingly difficult to understand. She is paranoid. She believes her neighbors are conspiring against her and her memory is fading. She cannot remember when she got married, when she retired, the day of the week, the time or even how to turn on the TV.
I am scared. I am frequently on the phone with the Alzheimer's Association hotline, asking for help and guidance, or just to talk it out. I have been advised to find a support group, online or in person. I feel like I am walking through a maze, and I am crying, even though no one can see the tears.
My mom is slipping away, and I am lost. I can't stop this from happening, but I can ask for more representation of the stories of minorities with this disease, to help those battling with the disease and to help their families understand what is ahead and where to get help. The number of minorities with the disease is expected to double. Our stories are different, but no less painful, compelling and meaningful.