The Bedside Dispatches

[Repost from June 16, 2015]

Around Thanksgiving of last year, my grandmother decided to stop taking all of her medications. Between the diabetes, the blood thinners, the Parkinson’s, and God knows what else she didn’t divulge to us grandkids, she had been taking some fifteen to twenty pills a day. It was a Big Deal; a decision with untold consequences for her and the rest of the family.

Had she lived 560 miles north, in Oregon, perhaps she would have opted for assisted suicide. But in California, where she’d resided for most of her life, the only option she had was to wait or, as she put it, to “let nature take its course.” It sounds poetic and dignified that way but, in reality, the last days are anything but.

***

I remember crying when the test results came back with the Parkinson’s diagnosis, several years before the present but many months after the tremors first started. (It had taken my mother and her siblings a long time to convince her to see a neurologist). We had recently said goodbye to my other grandmother, but mostly I was stricken with the sheer unfairness of it all.

Not long after losing their own mother, an older sister and her lewd husband brought my grandma from Manhattan to California thinking that their father would comp the transportation costs; he didn’t, and grandma was promptly ditched at an Oakland orphanage. Realizing that no one was coming back for her, she started working as household help and did well enough in high school to attend the University of California Berkeley, where she met my grandfather.

Married life brought grandma immeasurable happiness and prosperity, but despite such hardship early on she’d been dealt the trump card of bleak prognoses: an incurable degenerative disease. Sometimes I wished she had cancer instead.

***

“But Parkinson’s isn’t fatal,” people said to me on the rare occasion that I spoke up about her condition, as if not being able to do the things you once loved to do and, eventually, eat or talk weren’t a big deal. There is no coming back from a degenerative disease. Modern medicine can mitigate and perhaps delay the symptoms, but they will get worse. My grandmother didn’t have it as bad as some do in the early stages, but she had read the literature; she knew the hellish half-life she would eventually be reduced to and she didn’t want it. 

Others seemed to think that it was my duty to change her mind, convince her to go back on the meds and prolong her life a little. But to what end? You cannot help a person who doesn’t want to be helped. (I know from the multiple false starts in behavioral cognitive therapy it took me to finally overcome an eating disorder). These same people are part of the group that doesn’t fully grasp the concept of quality of life until faced with the abject lack of it. To try to force her into staying alive longer just for our benefit would have been selfish.

Besides, I had already seen my paternal grandmother go through the motions: losing driving privileges owing to an accident covered in the local paper, being deemed unfit to live alone and then, after taking too many falls, requiring full-time care and moving from senior apartment complex to nursing home. Bedridden, wheelchair-bound, confused about which year it was and even who we were when we visited — for most of the time that I knew her she was a mere vestige of the woman she once was.

With access to advanced technology and medicine, we are obsessed with quantity over — and sometimes in spite of — quality. We automatically assume that a longer life is a better one. My paternal grandmother was 97 when she passed away, and during the last several years of her life she’d frequently say, “I never meant to live this long.” If I had asked any of the other three elders who shared a room with her in the nursing home, I’m sure they would have said something similar.

***

I was in China when my parents broke the news about grandma’s decision, and several days later I was back by her side to assist in the hospice care efforts. It was a confusing and difficult time trying to reconcile the sweet, generous optimist that I grew up with, versus the frail, withdrawn woman who dozed on the couch all day and whose routine (formerly waking early, gardening, sewing and running the household) had been reduced to watching Charlie Rose at noon and otherwise flipping between news channels. 

The grandma I knew had a healthy appetite and would stock the fridge with things you liked if she knew you were coming, and so in the beginning I convinced myself that she was depriving herself on purpose. After all, with assisted suicide off the table, self-starvation seemed the next logical step. But then I read the pamphlets provided by hospice and realized that it was an inevitable part of the process.

Pretty soon she would take in nothing at all. Pretty soon, she would fall asleep and not wake up again. But in the meantime we all had to watch her grow ever thinner and weaker.

***

Whenever grandpa asked if he could do anything she’d say, “I wish there were a button I could press so I could just end it all.” She was almost petulant in her desire for it to be over. How could she know, how could any of us know, that even without all the meds it would be a matter of weeks and not days?

When, the second week of December, a beloved sister-in-law passed away, she said, “Oh, I wish it had been me. She had so much more to live for.” Tears stinging in my eyes, I wanted to grab her bony shoulders and scream, “What about me? What about us?”

I hated myself for being frustrated with her; she was dying after all. And what are weeks of difficult, child-like behavior compared to years of birthday and christmas gifts, handmade dresses and happy memories?

Whoever first said that love conquers all was, at best, delusional.

***

We all offered to help — turning her, transferring her between sofa and wheelchair, adjusting pillows, but at first she would only accept assistance from my grandfather. I get it; sixty years of marriage breeds an intimacy so strong that it diminishes the awkwardness of being sponge bathed and changed, but as I saw him don a back brace and lose his balance (not while holding her, thank God), I began to worry about him almost as much as I did her. I couldn’t imagine ever reaching that level of closeness with another person.

Who will take care of me when I am infirm and unable?

My mother often says that old age emphasizes “essential” personality traits (mostly, I believe, to explain her own father’s many eccentricities), but I preferred to think that my grandma had already departed this world, and that the figure that grandpa wheeled into the kitchen every morning (still alive, to her chagrin and my relief) was just a shell that would soon be cremated and reduced to ash. I tried to love her as best I could, but she had changed.

***

I would sit with her in the living room, almost afraid to look at her for fear that I wouldn’t see the barely perceptible rise and fall of her chest. The nurse said that her heart was racing to maintain a resting rate, which we all knew wasn’t sustainable. She hardly spoke any more, and when she did it was only to ask for something — a sip of water, a change of channel.

Some days I made excuses to stay away. The monotonous blare of CNN and BBC made me more informed of current events than I’d been in months, but her complete disengagement from her surroundings stung. And it pained me to see how small she had become. With all her fat and muscle tissue wasted away, she developed a bed sore — a combination of chafing and sitting too long and her sacrum tearing through the fragile skin that caused her great pain.

***

Against all odds, she made it to Christmas, and then New Year’s. She was too weak by then to protest against people other than grandpa helping her.

What’s harder to change: a baby or an elder? Our eagerness to help, matched only by our fear of failure, led to clumsy ineptness. A frantic, disorganized mess. 

***

By January her once plump figure had truly diminished to wrinkled skin hanging off the bone. And she was always cold. “I’m sorry for all the trouble,” she’d whisper as we finished up.

“No,” I found myself saying as I pulled the blankets back over her, “I’m sorry.”

She looked like a child in the XL twin hospital bed that we set up when the combination of bed sore and sitting became too much, peering over the covers at the TV. It was hard to tell if her eyes were open and if she was asleep or not, but as I leaned over she’d sense me, give a small smile and say she was fine.

Trepidation crept up every time I checked because I knew that there would soon come a time that she wouldn’t open her eyes, wouldn’t smile again, or have a witty response at the tip of her tongue. In hindsight, a sharp mind trapped in a useless body seems the cruelest kind of imprisonment.

***

I think she would have laughed to know that it ended with a bowel movement. She asked us to change her, but her stomach was still clenching, so we waited. And then she was cold, so we covered her back up. The convulsions proved too much for a body with nothing left to burn, for not long after I tucked her in she stopped responding and began panting for breath.

Truthfully, it was an awful noise like a sound effect from The Walking Dead, but my fear retreated when I realized what was happening. I worried that it would take hours, but the movement, the breath — everything — ceased about thirty minutes later.

I just hope it didn’t hurt.

***

She had tried to say goodbye months earlier, that night I first left for Asia, but I was stubborn and refused to believe that it would be The Last Time. So I hugged her and gave her a kiss — I remember her cheek being damp with tears — and I said, “Don’t worry, I’m coming back.”

I wish I could remember what exactly it was that she had told me moments prior, something about achieving success in everything that I do, because that was it. Our last real conversation.

***

I held her hand the whole time, and when it was over my uncle made the appropriate phone calls. First the hospice nurse, who came and called the time of death and filled out some paperwork, and then the morgue, who sent two men in dark suits and wool coats. What a strange job it must be to wear fancy clothes and wait by the phone for tidings of death, then give canned words of comfort while asking if the deceased has any metal in her body — a pacemaker, maybe? They filled out more papers with answers we gave numbly.

I pressed my lips to her forehead one last time, then stood back as the men lifted her onto a gurney, zipped her up and took her away.

Ruby Doshim Lai (b. July 26, 1929) passed away in her home, surrounded by family, on January 10, 2015.