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Published on: July 11, 2013
by Jeanine Grimaldi for The New York Times:
“I don’t live here. This is not my house!”
My grandmother clutched the insulated lunch bag with her name written in black marker and looked through the van window at the small brick house where she has lived for over 50 years in Sheepshead Bay, Brooklyn.
It was around 7 on a Friday evening, when my family got a call from the van dispatcher. The driver had picked up my grandmother at the senior center she attends each weekday, as usual, but when the van arrived at her house she refused to get off. The home care aide waiting for her couldn’t persuade her to come inside, either. My grandmother Mary, 83, was getting agitated, and so were the other elderly passengers.
My grandmother is one of more than five million Americans who have Alzheimer’s disease. Sometimes these patients experience sun-downing, a period of increased confusion and restlessness toward the end of the day, and my grandmother was having one of these episodes. It is hard to know how to handle these situations, but it is best to have family around because patients can say upsetting things or even become physical.
My father is 57, my grandmother’s eldest child, and the first person called when she starts to have an episode. That evening he was at work and wouldn’t have been able to make it to my grandmother’s for another hour. My mother and I were close by and were able to get there quickly — luckily, because if we didn’t, the van company would have called the police. (This has happened before.)
When we arrived that Friday evening, I told my mother to stay in the car while I tried to persuade Grandma to come off the bus. I silently prayed that when my grandmother saw my face, her mood would change.
Alzheimer’s has stolen her recollection of the people closest to her, but the face she always seems to remember is my father’s. His olive complexion, deep brown eyes and wide grin bear a striking resemblance to Grandma’s brother, Joe, who died at the age of 43, decades ago. She will often refer to my father as her brother, but will always call him by his name, Jimmy. I look similar to my father, so I was hoping this would play to my advantage.
When I was younger, my parents would take me to my grandparents’ almost every Sunday, alternating between our maternal and paternal grandparents’ houses. There was always a big Italian dinner with our cousins, all girls on both sides of the family. At Grandma Mary’s and Grandpa Rocky’s, after we all had emptied our plates per Grandma’s orders, my cousins and I would dance along to the music in their jukebox, a rotating mix of old Italian songs, Frank Sinatra and Tony Bennett along with soundtracks from their favorite mob movies.
On Christmas my father was Santa and even now, though the cousins are all over 18, we make him dress up, because the tradition has become very important to us. My father is a bridge between generations. During family dinners, he would take out old photos of his grandparents and tell us all about them. Even though I never met them, my father has told their stories so many times I can repeat them verbatim. If I drove with you down the stretch of Flatbush Avenue from Kings Plaza to the Brooklyn Bridge, I could probably tell you a story about a milestone in one of my grandparents’ or great-grandparents’ lives by passing certain landmark buildings (thanks, Dad).
On certain holidays we all make a trip to the cemetery. We usually have two cars full of family members, and visit three generations of deceased love ones, all buried in different areas of the cemetery. Dad knows the way to each gravesite. With his storytelling and insistence on family outings, he has taught me and my two sisters that family is a gift as well as a responsibility.
Through the years, we went on a few small weekend trips with my grandparents, parents, aunt, uncle and cousins, but there was one time when my grandfather, Rocky, insisted we all take a cruise. The next year, he died, just a month shy of his 50th wedding anniversary, and after that, my grandmother’s Alzheimer’s grew more apparent. My father and aunt had hard decisions to make about her care. She couldn’t be alone, yet she wasn’t ready (our family wasn’t ready) to put her in a nursing home.
It took a while to find home aides who clicked with Grandma, so in between college and part-time jobs, each of the seven granddaughters took a day with Grandma. My father didn’t have to force us; we knew from the way we had been raised that it was our generation’s turn to do our part.Grandma and I are similar in features, small women with olive skin, deep brown eyes and dark hair. Looking at photos of her as a girl can be haunting, as if I am staring at myself from decades past. My grandmother no longer knows my name, but when she sees me on a good day, she smiles because she knows I belong to her.
Today was not a good day.
The van door stood wide open and the driver was waiting nearby. The lighting onboard was dim; the van smelled like a nursing home or hospital. Some of the other seniors sat quietly; others were starting to complain that they needed to use the restroom and that their families were waiting for them.
I tried to entice Grandma to leave with promises of a big pasta dinner or pizza. I told her that her dog, Crystal, was waiting inside and needed food. Nothing worked and I didn’t know what else to do.
By this time, my mother had suggested to the dispatcher that the driver drop the rest of the passengers off; he had three more stops, all fairly close by. The bus company agreed, but said someone had to stay on the bus with my grandmother. So I sat next to Grandma and stayed quiet as the driver closed the door and hopped back in his seat.
After the first passenger was dropped off, I turned to my grandmother and said hello with a big smile. She smiled back and started talking to me. I asked her about her day and what she had done and saw her mood start to shift. She loves to sing and dance and my family has found this is a great strategy to divert her when she gets agitated. Sometimes it works.
This evening, I was lucky: It was a clear evening and the moon was big and bright. I grabbed Grandma’s hand and pointed it out to her. By the time we drove back around to her house, we were on our second chorus of “That’s Amore.” We were able to get her off the bus with ease; she even thanked the driver. Poor guy, it was his first night on the job.
Alzheimer’s is an insidious disease. It is hard to explain to others, especially to people my own age, because we are visual people, and the dementia’s destruction can’t always be seen physically. I am an advocate for Alzheimer’s treatment, serving as the co-chairwoman for the annual Walk to End Alzheimer’s in Brooklyn in September, because I fear the day that someone else I love becomes affected by this disease, for which there is no effective treatment and no cure.
I always wonder how my grandmother would fare if she had no family or if we lived far away. My parents, aunt, uncle, cousins and sisters all know that taking care of Grandma is hard, but we give her the best quality of life we can. Some days are still fun and rewarding and others are incredibly tough but we are all working together. I know my grandfather Rocky would have been pleased.
That night, by the time my father arrived home from work, Grandma was calm and safe at home with her aide. My father often thanks me when I help in these difficult situations. I feel silly being thanked; as he has taught me, this is what family does. My parents have demonstrated over the years how to bring a family together during the best and worst of times. I hope my actions show that I have been listening.
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