Maryam: The Final Year
by Connie Tsang
Ma left Bangalore in her 30s and came to Canada with her family, and despite not having much education, found work, a place to live, and eventually owned and operated a string of Chinese restaurants in small-town Ontario. It was difficult work running this business -- simultaneously serving customers in the dining room, scurrying back to the kitchen to slave away by the grill, and managing all the orders, human resources, bookkeeping, legalities on her own. For someone with only a grade-one education, fairly new to the country, and raising a young family on top of that, this was absolutely impressive, and especially, being the ’60s and ‘70s, while being a woman.
Looking back to my childhood, watching my mother -- so strong-willed and industrious, never questioning her street smarts, physical strengths, or equality to men, who had more responsibilities in one day of her life than I've had in a year, without complaining -- I realize I’d been given the best feminist role model that no textbook figure could ever provide. And for this, I am the most thankful.
When my mother was diagnosed with Parkinson's and dementia and her language and mobility began deteriorating to require external care, it gutted my family and I to place her in a nursing home. The sense of guilt was, and continues to be, enormous. Given that the nursing home was in Toronto, I spent substantial time with her in this final year, and saw her rapidly crumble under the command of cancer.
Family visits. Since we've arrived, extended family members that we rarely see have been getting in touch for visits. Our family tends to work that way; we've admittedly been outcasts and only seem to connect when there's a marriage, illness, or death. I guess this is official confirmation that things aren't going well, and I have to accept that. I expect there will be a lot more of this.
I admit I'm sometimes frustrated by my mom and her stubbornness, inability to follow instructions, and newly formed (strange) habits -- she's pulling on bathroom alarms as a joke, constantly wanting to steal and hoard Kleenex, always asking to go to the washroom, and then immediately wanting to leave once I get her on the toilet. The sad part of this situation, and aging and dementia in general, is that I know things aren't going to improve. It constantly feels like whatever we do, there's no point, no grand goal, no growth as a reward.
Ma's been diagnosed with mucosal melanoma of the nose. It's a rare cancer, but strangely, not as rare in Asian women. We've come to the specialist at St. Mike's to get a sense of the size of tumour, but the probe was so bothersome that my mom wouldn't let it in past the base of her nostril. We can't rationalize with her at this point, so we let it go and let her cry until she felt better. But we did see the lump on the screen, and it's pretty big. No wonder she's constantly trying to blow her nose.
Her nose wouldn't stop bleeding this morning, and the home rushed her to the ER. She feels so small to me now. It's been a long day.
I never thought I'd feel comfortable wiping my own mom's butt, but it's become a daily part of life. Recently, though, she's been losing all muscle in her legs, and it's become a bit too dangerous to do on my own. This machine helps lift her up and down from the toilet, but unfortunately, we need to flag a PSW down to operate it, and they're always spread so thin. At least she's in a diaper, but I don't like the idea of sitting in her waste all day long. This is hard to see.
I've spent more time with Ma this year than in the 19 years since I moved away from home. For a long time, I resented family and the rigid expectations of which war-era, third-world immigrant parents seem to excel. With the decline in communication and most of her reactions being only in response to slapstick humour, I often doubt she understands what I'm saying to her. Today, in a moment of frustration, after I was showing her old photos from when I was a kid, I vocalized in the most non-accusatory manner, "You know, I was a pretty good kid, Ma." To my surprise, she immediately started to bawl, and it occurred to me that, perhaps, she does know what's going on.
I found a studio apartment for my father just a block from my mom, so he visits every day. It's been very convenient, but I think this is wearing on him.
Ma's head is bent over from all the cancerous masses lodged in her head and neck, so much so that we have to bend down to see her face. She's constantly trying to blow out the large tumour lodged inside her nose. She's 100% no longer laughing, which was one of her last few memorable traits.
Her breathing is laboured and a torture to listen to. The tumour is completely blocking her nasal passage. Her nose bubbles with blood. There's not much we can do.
At lunch today, one of the PSWs noticed I was having some difficulty feeding mom and took over. "We used to laugh with her all the time, you know." And then, she held her head. "Connie, we love your mom so much." Her eyes started to well up and then she burst into tears, which shocked me, considering she must deal with death often -- I figured she'd be numb to it at this point. This broke the dam in my own eyes, and I crumbled. "I love her, too." It was the first time I actually said this out loud -- you know, Asian pride and all. This made me cry even more.
At this point, I think she's just trying to sleep so she doesn't have to be awake for the pain. It's hard not to cry every time I visit.
When my mom moved into a nursing home here in Toronto, I was finally given an opportunity to get closer to her, something that I took for granted when I left home as an adult, pursued a career, kept busy doing city things. It was not an ideal circumstance, this reunion -- her being frail, unable to properly walk or speak, and then the sudden physical breakdown of her entire body over the last year. I saw her a lot -- in the last couple months, almost daily. And as hard as it may have seemed on the outside, as many times as I heard "you're so brave," all I could think of was if I didn't do this, it would feel so wrong. This shouldn't be an act of bravery, to visit someone you care about: It should be so mandatory that it shouldn't need to be said.
Early this morning, I got an urgent call to come to her bedside. As I held my mother's hand and saw her gasp her last breath, I thought back over the whole journey; if there was anyone brave in the matter, it was definitely her.
Ma: This has been a five-year-long adventure full of frustration and ongoing tests of patience.
But you were feisty, strong, and admiringly independent, especially given the situation.
Thank you for being the brave one through all of this.
I hope I can carry your strength with me, especially in these coming days, head held up high.
Rest in peace. Love, Connie.
FEBRUARY 6, 1934 - DECEMBER 6, 2015