"Your hair looks very nice today."
"Thank you, Grandma. How was your day? Grandpa said you two went to church this morning. How was the sermon?"
"…Oh, I can't remember, but it was nice. I like your hair. Have I told you that already?"
"Yes, Grandma, you did."
"Oh…sorry."
"It's okay."
My grandparents raised me after my mother was killed in a car accident. I was 7-months-old when she died; my grandmother was 58, and my grandfather was 56. When my grandmother carried me out of the hospital, an infant with a full leg cast from the accident and three stitches on my right cheek, all notions of grandchild spoiling and weekend visits were instantly replaced with a resurgence of her maternal instinct.
The courts awarded my grandparents custody, deeming my father unfit because of domestic-abuse issues that led to my parents' separation shortly before I was born. My grandfather came out of retirement shortly thereafter. So much for enjoying old age.
Raising me wasn't always easy—partly because I didn't make it that way—and the generation gap was often tough to bridge. They became parents over again, 28 years later, to their only daughter's only daughter. They attended every concert, every meet, every back-to-school night, put me through college and helped me furnish my first apartment.
But as soon as I left the nest and it looked like life would get just a bit easier for them, my grandmother was diagnosed with Alzheimer’s disease.
My grandma has the tenacity and strength black mothers have shown since the beginning of time. And as the disease crept up on her, she fought—fought to remember recipes, phone numbers, names of acquaintances. She fought to prove she was still self-sufficient, even though we could see her house falling into disarray. For a while, my grandmother even fought with us about her medicine, saying she was taking it even though her entire weekly pill organizer was still full. "Well, someone must have put those in there after I took some."
The difficulty of Alzheimer's disease is the length of time it takes you to realize your loved one is affected by it. To this day, I can't put a finger on when her brain cells became too tangled to function like they used to; in hindsight, it could have played a part in her decision to stop driving or her not feeling up to hosting Thanksgiving dinners anymore. Because I was getting older myself, we just attributed her less active participation in my upbringing and other things domestic to her 70-something age.
She laughed at herself when things slipped her mind, so we laughed, too, for a while. But the laughs soon faded when she accidentally left the stove on or got upset when she couldn't find her way back to the dinner table from the restaurant bathroom. By the time the disease progressed to a point that caused my grandfather and me concern, it was too late.
The first case of the disease was identified by Alois Alzheimer, more than a century ago. Today over five million people are living with Alzheimer’s. More than 90 percent are over 65, and women are almost twice as likely (1 out of 6) to develop Alzheimer's than men (1 out of 10). My grandmother's two sisters also had it, but her brother does not. Medicine can slow the degeneration, but there is still neither a cure nor a definite means of prevention. Because Alzheimer's patients require so much direct care, and are often unable to independently and effectively address other secondary health issues, their treatment can become very expensive. The burden rests on both government and individual caregivers.
My grandparents live in an assisted-living facility, and since my grandfather is a veteran, their housing is slightly less expensive than they otherwise would have been. If my grandmother were staying there by herself, though, in their Alzheimer's wing, her care alone would cost more than my grandfather currently pays for the both of them. But despite her condition, my grandfather was determined not to leave her side or suddenly stop caring for his wife of 58 years.
Part of me feels guilty that she sacrificed the freedom that follows the successful rearing of an independent child to endure that all over again just for me. And another part of me is angry that I have to go through this at such a young age. As their "only child," I was granted power of attorney at age 25. Now that my rebellious days are long gone, I'm desperate to connect with my grandmother on that woman-to-woman level; it is disconcerting to see how much she's changed. The soul of the most important woman in my life is trapped behind a child's eyes and a vapid expression.
My questions to her about our heritage are met with confusion and visible frustration. The stories of her past, her perspectives of being a black woman, a matriarch, have all retreated to a part of her mind to which she can no longer gain access. It made me wish I had appreciated the history she tried to share with me in my younger days.
Life has come full circle, and the caretaker has become the cared for all over again. My grandmother is still very much alive in body and in spirit, but I miss her mind. Plain and simple. The experience has taught me that there is always a book worth reading, a new skill worth learning and a story worth retelling because it will help keep my brain sharp and the memories alive and fresh. Having a loved one develop Alzheimer's is rough, but my enduring love and appreciation for her sacrifices makes the road to follow more bearable.
Jordyn White is a writer based in Washington, D.C.