(The Root) — "I just didn't realize the extent of your grandfather's illness because I was so busy taking caring of Mommy," my mother has a habit of saying.
In 2009 my grandmother Olevia died of interstitial lung disease, and her passing has been extremely hard on my mother. Three years later she's still grieving, and so am I, in some ways. My "granny" was one of my best friends.
And while she and I had a close relationship, from gossiping about church folks to the latest family drama, I've since gotten to know my grandfather Curtis in a new way because my mother and I realized that he was suffering himself, from Alzheimer's.
Alzheimer's, the most common form of dementia, describes a number of conditions that occur when the brain's nerve cells die or cannot function normally. This development causes changes in one's memory, behavior and ability to think clearly.
Studies suggest (pdf) that two-thirds of people with the disease are women, and older African Americans are about twice as likely as older whites to have Alzheimer's and other dementias, while Hispanics are about one-and-a-half times as likely as older whites to have Alzheimer's and other dementias. The cerebral deterioration, which can wipe away the sufferer's ability to walk or even swallow, is fatal.
At first the disease my grandfather shares with 5.4 million other Americans appeared in small ways, like getting lost on the way to places he once knew or abruptly walking away from a task.
"I knew something was wrong when he picked me up from the airport to head to church and drove right by the street," my mother recalls.
Mom and I thought that my grandfather just wasn't paying attention, but then we realized that he couldn't see the errors, and my granny had been organizing his affairs. From handling his church-choir presidential duties to making sure he didn't walk out of their South Central home mismatching and "looking a hooksy," as she'd say, her forethought kept us in the dark. But once she fell ill and couldn't care for herself and her husband anymore, we saw the signs.
My mother took my grandfather to the hospital for a diagnostic test, in which he was instructed to do things like count backward or draw hands on a clock after being told to illustrate a certain time. Days later, he was diagnosed with Alzheimer's.
Choosing the Right Treatment
Alzheimer's medication — see a list of FDA-approved treatments here (pdf) — like most drugs, behaves differently with each patient. My grandfather's doctor, under the supervision of my mother, began testing different options to see which worked best with his system to stave off the disease's progression.
First up was Aricept, which turned my polite, kind and agreeable grandfather into a moody grump consistently ready to argue. One day he and I were standing in the kitchen arguing over whether to change a lightbulb when he walked himself within five inches of my nose, then told me to "Get out of his face." Who was this guy? My grandfather fussed only when he, a die-hard Lakers fan, was coaching the TV while Kobe Bryant played.
Then his doctor prescribed Namenda, a small pill that complemented his system and his personality.
Though the medication was taken care of, there were other issues to consider. My mother, the only child of my grandparents, lives near San Francisco, I, her only child, live in New York, and my grandfather remained in Los Angeles. Like 800,000 other Americans (pdf) suffering from Alzheimer's, he lived alone without any family nearby to care for him full time.
And while "Downtown," as folks like to call South Central these days, isn't Boyz N the Hood, it's definitely not The Fresh Prince of Bel-Air. Still, with a trustworthy caregiver cooking his meals, cleaning up and monitoring his medicine from 9 a.m. to 5 p.m. each day, my grandfather was stable. He didn't want to move.
He'd just lost his wife, and simple things like counting his change before leaving the grocery store had become a problem. One of the key treatments for Alzheimer's sufferers is to keep their living space clean and household items in the same place, from food to soap and towels. Routine provides ease in a life filled with confusion.
I didn't think it was a good time to move him away from his comfort zone, either, but my mother wanted him closer to her. She worried about the dangerous things that often happen in poor neighborhoods, like robberies or scams from those who go door-to-door to prey on seniors.
After numerous conversations, we all agreed that he'd stay in Los Angeles until he was unable to live alone. Eventually, however, the traveling back and forth from Northern to Southern California to oversee doctor's appointments and handle errands around the house she'd grown up in took a toll on my mother. She, one of 15 million Americans (pdf) who provide unpaid care for a person with Alzheimer's, was constantly exhausted and unable to focus at her postretirement job, and she saw her husband only sporadically.
Hiring a Caregiver
Fortunately, we continued to employ the wonderful caregiver who had been managing both of my grandparents before my granny's death. But then we found ourselves looking for a weekend employee, and finding someone the family trusts not only with an Alzheimer's sufferer but also with the care of a house, finances and a car is extremely tough.
My mother handed me that duty when I traveled to Los Angeles in 2010 — I'm a freelancer, and if I have my laptop and my cellphone, I can work anywhere — to care for my grandfather and give her a break. I wasn't new to this hiring process; before my granny passed, I'd brought on and trained a weekend nurse for my grandparents through a company called Aftercare, but this was different.
With Alzheimer's patients, you can't just look at the person's résumé and whether he or she can cook healthy Southern foods — a must for my grandfather. The applicant must have medical training as well as compassion, patience and awareness. If my grandfather is having a poor day remembering where to go and what to do, the caregiver must readjust his sails and know he's doing the best he can.
And this wasn't only a lesson for the caregiver, but one for my mother and me, too.
Adjusting to New Familial Roles
We had to learn to be a daughter and granddaughter in a whole new way. Each time we tried to get my grandfather to do something, we, at once, had to remember to communicate tactfully and with care. He might refuse to take his medicine or vitamins like a child, but he was an 87-year-old man who deserved respect and patience.
So instead of frustratedly using phrases like "Don't you remember?" — which you should never do with an Alzheimer's patient — we repeated things. We hid food he shouldn't eat, and household tools that were dangerous, like a Home Depot ladder he was determined to buy and climb.
Trips to the grocery store became a skillful dance because he'd want to purchase everything that wasn't good for him and didn't recall what he already had at home. Darting through the aisles, I became a master at hide-and-seek as he filled the shopping basket and I tucked redundant items back onto the shelves behind Captain Crunch boxes.
But sometimes my mother and I would give in, like when I found myself in the fruit section of Food for Less, tugging a bunch of bananas back and forth with my grandfather because he didn't remember that we already had some at home. Finally, I let go. Sometimes it's OK to have too many bananas.
One year later, in 2011, I returned to Los Angeles to care for my grandfather and saw firsthand how much his dementia had changed him. Instead of adhering to his regular schedule of breakfast, a few hours at the senior center to play dominoes and then lunch and dinner back home, he'd "fix" things around the house. Sometimes he wouldn't want to go to the center, or he'd disappear and his caregiver and I would tear around trying to find him.
Then his balance was a problem, and steps he'd usually take in stride made me so nervous that I started walking directly behind him, just in case he got turned around or slipped. In November, Alzheimer's took a little more of his identity.
Last Thanksgiving, my grandfather visited my mother's house for the holidays. While this was normal — he'd often fly by himself, with the nurse dropping him off at the gate and my parents picking him up on the other end — his behavior was not. He began to faint sporadically.
Fortunately my mother was present when these dizzy spells occurred, but his doctors couldn't identify the cause. This, of course, meant that the agreement among my grandfather, mother and me — that he would remain in L.A. until he could no longer care for himself — had expired. What if he passed out at home alone and hit his head on the stove? What if he was on the ground for days?
Though my mother had wanted him closer long before, the realization that my grandfather was officially moving into my parents' house cast a somber shadow. Because he is as courteous as his name, Curtis, suggests, when my mother broached the "Daddy, you can't go home" conversation, he was receptive and said he'd rather stay with her than in a nursing home.
And while he's treated with love, affection and attention at my mother's, the transition was a blow to each of us. My grandfather couldn't ignore his aging process and how the disease had robbed him of his independence; my mother watched her father, in a way, become the child by living under her constant care; and I realized that my grandparents' home was no longer one of warmth and love but a reminder of our family's history and the ultimate path of Alzheimer's and aging bodies.
Soon my grandfather adjusted to a new Northern California schedule of water aerobics, domino games and Sunday school classes with my parents. But I know that a small part of him wishes he were still in Los Angeles, in his favorite recliner, watching the Lakers and eating a banana all by himself.
Hillary Crosley is The Root's New York City bureau chief. Follow her on Twitter.