Ma Chronicles: Caring for a Loved One with Alzheimer’s (part 1)

“How is your mom?” asks a face staring through the tiny zoom screen. One popped up after the next to say hello to each other, before the gentle yoga asana class begins. Somehow, on this day, I tried a new answer.

“Well it’s hard to say.”

“Is her disease progressing?” asks an elder woman, who I know is concerned about her own age-related memory loss.

“Well it’s hard to say”.

I hear the repetition of my words and it brings up an awkward smile, so subtle that it is barely detectable on my face. I continue, “We are at a phase where there are certainly many major losses. She requires full time care. But there is an awareness still at times that she has this disease. She has moments where she is aware and doesn’t want to accept care in those moments. I am hoping to see you all next month. That is, if I can leave the house”.

Ten tiny squares of grey hair nod their heads. Given the statistics for Alzeimer’s disease, 50% of those over the age of 80 in North America, I do not know if it is wise for me to share this perspective with this kind and courageous group of elders, if it will bring up their fears, yet, the words flow out today calmly and clearly.

“I’ve been where you are,” says a tall, wiry older woman with a gentle smile of knowingness, “and my heart just goes out to you. I know you are going to do a very good job. There really is nothing you can do except be present, one day at a time”. Her simple words penetrate with depth. ‘A very good job’. She spoke with the wisdom of a person who knows the grief behind the mask, who’s lived this particular art of daily defeat.

Caregiving a person with Alzheimer’s, worse, a parent, can feel like becoming a doula of ego death. With my background of studying yoga in India, one might think I am perfectly positioned, bolstered by a philosophy that helps others’ to disentangle from limited identity and slide into the bliss of some great abyss of enlightenment. However, in this this journey of ego death, we do not know where the carriage leads through a maze of the mind and the dust that unsettles through the ride.

A caregiver only knows they are witnessing their loved ones slip into the unknown while their hearts still tick away and the breath still fills their bodies. It’s not as comforting as a linear path. The hopeful moments are almost cruel. The caregiver acts like a light in the dark while losing their loved one at the same time.

My heart breaks when I watch her, my mother, fight to hold onto her dreams for the future, like seeing her seven year old grandchild graduate from high school one day, though she has already forgotten her own daughter at times. The present reality narrows in on the past, oppressively, until what is left are but vibrations, momentary actions and reactions.

How long will this last, I wonder? Isn’t there a more compassionate death than one that can take a decade? Sometimes in lucid moments she asks what did I do to deserve this? “I didn’t drink much alcohol”, she repeats.

All of my mother’s survival strategies have come to the fore in plain view, her incredible capacity for denial, her fierce stubbornness, her dependences, and her independence. She is naked in front of us. As caregivers, we want to protect her like a child, but she is fierce. She is adamant that she still cooks (she doesn’t), writes (she doesn’t), and can live alone. I have to pretend that we are not helping her as we are helping her all day long. I have to pretend I am visiting for a few days when I come for months on end. As she has no sense of time or memory, one day turns to the next without her realizing that she does not live alone anymore.

She often tells the same stories, sometimes with mixed facts and fiction, and one of them recently on repeat was about how she heard her father cry for the first and only time, when she was embarking on coming to the United States. In 1970, she walked into the unknown, as she set foot on an airplane to the United States, “the land of milk and honey” as she called it after getting the first waitlisted spot for her Fullbright scholarship to complete her Ph.D in microbiology. She didn’t know what an escalator was and had never stepped on a plush carpet. What a country! Her father, who had studied in Scotland, must have known what she would face.

My mother did not get where she is in life without a bold and brave heart. She has always been a fighter of forces larger than her mortal body, more elusive than her mind can acknowledge or comprehend. In some ways, I think that it was always easier to deny the magnitude of systemic ills and slights she faced, that acknowledging them would ruin her hope in this country she had chosen. To connect her struggles to the rest of the brown and black people in this country would prove her wrong (and she didn’t like to be wrong); it seemed nobler, braver, like taking the proverbial high road, to carry on fighting her own individual battles, one person, one place at a time, as if they were just her own. I always believed this could not be without consequence.

In the process of establishing three successful, prolific careers, first in microbiology and pharmaceuticals, to biology teaching, to lastly creative writing, she fell in love with the worst of the West: canned soups, diet shakes, pills that you never wean from like anti-depressants, white sugar and coffee mate. If it made it on a shelf, or was developed in a lab, she not only trusted it, but thought it to be ingenious and far more convenient. Her lists of accomplishments, awards, and publications were each steps on this journey to somewhere and confirmation of her strength and intelligence. Her journey of success was the ground beneath her feet, the land to which she was indigenous, as she repeated many times that she had no sense of home.

People say we are alike, but I don’t think she ever believed we were cut from the same cloth. One of the only childhood memories I have of time we spent together, just her and I, is when I was probably about six years old, walking on Bethany Beach on the eastern shore at night:

“Look at the stars,” she said “bright balls of hydrogen and helium, born of nebulae.”

“Wait, Mom, stop!” I said, urging her to silence. “Don’t you just want to wonder?”.

How can I ease her slip into the unknown now with peace? Now that she can no longer cook, she wants to walk around the house with a tub of ice cream and a spoon. She answers my requests for her to shower with “why should I”. The other day, when I tried to go through her old clothes with her from past decades to get rid of some things, she wanted to keep all of her blazers and blouses as she sometimes believes that she will become a teacher again, though she was happy to part with those nagging workout clothes; they could go right into a garbage bag and over to the GoodWill.

We all read the research, and wish we could pinpoint an answer. If only we get rid of sugar or plastic, exercise more, throw out her teflon and aluminium, get more blood flow to the brain and eat vegetables with more nitric oxide, if only that was enough, if only she would comply, if only we knew the perfect cocktail of self care, or could find that pill that my mother would like to take to make this go away, if only.

We know that the likelihood of scientific breakthrough in the time she has left is unlikely and her ability and willingness to follow lifestyle protocols is almost none. Like many families, we have many beliefs about what’s best for her, and share only grief that none of us can control her life and take a shot at changing this reality with the disparate knowledge we have. We know it’s late.

I have had to grieve my limited influence on those closest to me and like 17 million other Americans, settle into this role of simply trying to create moments of joy and comfort here and there, as life passes for all of us.

How is your mom? I get this question daily and rarely have an answer.

“Same”, I say, to control my own mind.

To describe the changes week to week would be boring for them, discouraging for me, and undignified for her, and unless I can state a sudden miracle, I answer the only thing fib that deflects the grief, “she’s the same”.

As a writer, yoga teacher, and Ayurvedic practitioner, Anjali shares globally with a focus on tradition and accessibility.