“Most of the time I feel I live in an insane asylum!” my mother shouts at me on a recent visit.
My mom lives in an assisted living home in Jersey. Many adult children deal with the surreal and exhausting aspects of caring for an elderly parent. Only my mother isn’t elderly. She’s 61. I’m 34.
When I visit my mom I see people who are tired and broken. They don’t always remember who they are. Pat goes, “Pit Pit, Pit,” Pete, a former mailman for over twenty-five years, asks over and over, “When can I go back to New Brunswick?” Rosie can’t hear a thing. Fran tells me repeatedly I can use her dirty napkin at dinner. Bobby screams obscenities in the corner. Marion tells me she likes ginger ale thirteen times. Clifford comes out of his room naked. George sings “Embraceable You” with all the wrong lyrics.
Home Sweet Home.
Then there’s Jack. Jack is a prince and my mother has fallen in love with him. He’s 86, tall and slender. I can see why she’s fallen for him. I would fall in love with him, too, if I lived here. He’s charming, well-read and funny in a subtle way. He listens to opera in his room and organizes the Monday night classic movie each week. He works hard to find old films that most of us can’t even find on Netflix. But, each week only three people come and this makes him upset. Last week I joined them and we watched “Marjorie Morning Glory” starring Natalie Wood and Gene Kelly. He sits across from my mother at meals and helps her find the table. Mother can’t see the table otherwise. Jack has Glaucoma, but at least he can see what is around him. To my mother, things in space, especially on her left side, have disappeared completely.
“Your mother has a classic clinical variant presentation of Alzheimer’s disease called posterior cortical variant confirmed by metabolic PET scans of the brain,” Mom’s neurologist tells me February 2010. At least, finally, there is an answer to the frustrating and bizarre behavior she has shown, pushing windows, thinking they are doors, unable to put her key in a lock or drive on the right side of the road.
From her vantage point, there is no table. I’m glad Jack helps her.
Jack asks for ice cubes, then turns to me and says slyly, “Ginger ale warms quickly and cools fast.”
“Jack, you have Clark Gable beat.” I tell him.
While others are slobbering, yelling or staring into space, Jack and my mother have stimulating conversation about art, books, theater and politics. Mother keeps hoping Jack will ask her to his room to listen to opera or discuss Shakespeare. I tell mother she must not get her hopes up and enjoy Jack for who he is.
One day Jack asks mom to sit with him outside the Country Kitchen on the red bench.
Mother is so happy.
The next day he doesn’t want to sit with her on the red bench. My mother is crushed.
“But, he wanted to yesterday.” she tells me on the phone.
“Mom, Jack is very old and very tired. I know that your feelings are hurt, but you can’t take it personally.”
It strikes me how more and more our roles are swapping.
Mother runs into things all the time. The left side of her brain is atrophying so she can’t see what is around her. Each time she gets on the elevator she turns to the back and wonders why she can’t get out when the doors open. When they do open, she has no idea where she is and I must turn her around. Every time I direct her to her room. In the bathroom, she asks me, “Where is the bathroom?” The other day she insisted a protein bar I’d brought for her was a toothbrush.
When I snuggle next to her in bed she grabs my ass thinking it’s my face. I can’t know how the world looks to her. There is no way anyone can show me.
My mother loves malt balls and I bring them to her each time I come. I tell her I will put them on the table.
“Which table?” she asks.
“This one here.”
“Where is that?” she asks again.
“Jesus Christ!” I say angrily. “The only table in the room, Mother.”
She looks around the room fervently.
“Do you want them open or closed? Can you open them yourself?” I ask her.
“Open them myself?” she asks confused.
“Yes! Open them YOURSELF. I’m not speaking Greek here. Never mind. I’ll just make the decision and open them, OK? I thought you could at least decide that, but don’t worry about it.”
I am shaking with anger.
I open the huge package of malt balls and as I do, they spill everywhere. Little round dots of chocolate running in all directions.
I bend down and start gathering them up, one by one, tiny half-inch circles and, as I do, my mother starts to help, bending over, searching, picking them up slowly one by one. She is so little, so awkward.
“Mom, don’t,” I snap.
I’m a horrible daughter. A piece of shit. I know she can’t help asking where the table is, but she has also asked me where her phone and lipstick and purse are multiple times in the past five minutes and I am tired. Why do I get so angry?
“I can help.” She says calmly.
She searches for more malt balls on the floor and, watching her, my anger turns into waves of ugly, loud sobs as the chocolate melts in my hand.
“It’s OK. Don’t cry. It’s all right.” She says embracing me.
She’s comforting me for the first time in a long time. For a moment I am her daughter again.
Standing there, it is hard to know who is holding whom.
Now we are both crying and laughing.
“I’m sorry I snapped.” I say. “It’s just so hard sometimes. I feel robbed. We have no time alone. Sometimes I just wish there weren’t all these aides and people and loud intercoms around us all the time.”
What I want to tell her, but don’t, is that my anger is a mask for my fear. I am petrified that this disease (we never say the word Alzheimer’s) will move fast. I’m scared of the future, of her leaving me and most of all, that she will die and I will be consumed by guilt that that I have not spent enough time with her or loved her enough.
If I am very honest, I must admit there are times that I both love and hate my mother.
I hate her for leaving me like this, but I love her for teaching me the immensity of love.
I call the taxi that takes me to the bus stop to bring me back to New York. Sitting on the bench, I’m exhausted. I don’t even have the energy to pull out my iPod or open my book. I just sit and wait.
When I get home, I take two Tylenol PM and have a glass of red wine.
I need sleep. Tomorrow will be a new day. I’ll wake up, have my coffee, practice yoga, go to work, see a friend, but now I can’t talk to anyone. I always need a full day to recover after I see my mother. Relieved, I feel sleep coming, taking me slowly, until I’m out.
That week I go through a box of my mother’s things that I’ve been promising myself I’ll tackle for months. It’s taking up way too much room in my little studio apartment. Flipping through the folders, I see it’s mostly old student loan bills and bank statements. I’m about to chuck the whole box when I notice a file called, “Shaunna’s Stories.” I open it and am surprised to find an essay my mother wrote just fifteen years go about caring for her dying grandmother, my great-grandmother, Mary Hennesy Sherry. I am shocked how every thing my mom writes captures the very same feelings I feel about her. My mother writes:
“When, in my race to ”do whatever I want,” did I stop getting cared for and start being the caregiver? And when will that circle close back on me? And will I be ready, as she whose hand I now hold, so clearly is? And I think, ‘Maybe caretaker and caregiver are synonyms.”
Once a bright and talented writer and professor, my mother now can no longer write. She tries, but she can’t spell her name, or mine, and letters run off the page. I am humbled by how quickly time passes and how roles change. Frightened, too. Where will we both be in another fifteen years?
As we’re about to hang up, she says, “You’re the best mother anyone could wish for.”
“Mom, do you know what you just said?”
“No, what?” she asks.
“You called me your mother.”
“Oh, did I?’ she asks.
Then she says, “Don’t worry so much. You’re dancing on the water drops of your life just as you’re meant to. Good things are going to keep coming to you. It’s all unfolding.”
Mother and Daughter. We step in and out of each other’s costume and it changes second to second. Maybe that’s love. Giving up what we think someone should be so we see who they really are.