Carrying On: Reflecting on Death and My Grandmother’s Disease

Carrying On: Reflecting on Death and My Grandmother’s Disease

By:
03/03/2017

Sometimes I run to think through a problem, but this is not one of those days. I’m at Yates, running on the treadmill because my left knee is too messed up to run counter-clockwise for 40 minutes. Mind blissfully blank, I’m surprised when the thought comes—I cannot die the same death as my grandmother.

I don’t know where it comes from. I wasn’t thinking about my family or neurology or psychiatry or Alzheimer’s disease. The terror comes and grips my throat. This happens often, nearly every day. It’s not pathological, just human.

My family often jokes that my grandmother holds the world record for “longest-living Alzheimer’s patient.” At just 76, she has been sick for as long as I have known her—deteriorating gradually, slowly. Now, she doesn’t make much sense when she speaks, and she needs help with the most basic things, like brushing her teeth.

It’s a cruel irony, but she’s healthy otherwise. Even though her mind fails, her body refuses to die.

When I say I cannot die like her, I mean I cannot be dead for 20 years before I die. I cannot be a body without a mind; I cannot lose myself to plaques and tangles. When I say I cannot die like my grandmother, I mean I would rather die than live like she does.

Most people are with me until I express that last sentiment—when I wish myself dead rather than alive, when I deem another person’s life to be worthless. When I say that I wish my own family member would die.

My grandmother used to be very smart. She used to love me, when I was a baby, and her disease was in the stage of setting off fire alarms and taking the wrong bus. I don’t think she loves me anymore.

Humanity can’t be defined—it is too personal, and there is nothing necessarily fundamental to personhood, but we can define what it is for ourselves. For me, it is my intelligence, my passion, my fire. What is it for you? And if we lose that thing—what would we consider makes us, us—what would we consider ourselves, then?

I don’t think euthanasia is wrong in principle. If a life is not worth living, then it is just to end that person’s suffering with their consent. But what if they cannot give consent, as my grandmother certainly cannot?

I know my grandmother would not want to live the way she currently does. She lived her whole life holding onto love—she raised my mother, she worked, she pulled her family out of the Soviet Union. She used to put my mother’s lunch under her pillow so it would stay warm. My grandmother was once a strong woman. And so, to see her now, reduced to a body sitting at a table and muttering gibberish, I think she would have wanted to be dead. She would have seen that if she lost what she valued, she would have had nothing left.

But how can I know for sure? There are always those who say that her life is worth living, worth saving, and that human instinct would not allow her to want to die.

For years, my grandmother muttered under her breath, “Mama, come and get me. Take me to you,” over and over. She still says it sometimes.

I am not fighting, here, for the right to kill my grandmother—I couldn’t, even if it were allowed, not unless I had proof that she would have wanted that before her disease began. Most certainly, I am not saying the lives of the disabled are not worth living—my grandmother has worth. The question is how much she would have been willing to lose before she thought she didn’t have anything left.

I am saying there should have been a choice for her to make, while she could have made it.

The default is—and should be—life. The default should not be killing someone once they forget the names of their children. That is eugenics, and my grandmother, a daughter of the Holocaust, would be the first to tell you that is wrong.

But there should be another way. There will always be people who want everything done for them until the bitter end—feeding tubes, IV antibiotics, and 24-hour nursing care. But many, and I believe my grandmother is included here, would not want this.

I cannot know for certain. She was never given that choice. But, in a world where dementia is a leading cause of death, we have the opportunity to provide a lot of choices, and I think that’s our obligation.

There should be a way to have a dignified exit, to know the information and make a choice before losing the presence of mind to do so. They shouldn’t have to forgo all of themselves first.

This is personal to me.

My grandmother developed her disease in her late 50s, unusually early for an Alzheimer’s diagnosis. This means her case is likely to be genetic—early-onset familial Alzheimer’s disease. There is no way to know for certain, since her family has a history of early death unrelated to Alzheimer’s. This means the disease cannot be reliably traced. Genetic testing is expensive, and we’re not at a point at which we want to know.

But if it is genetic, then I know one thing for certain: I have a one-in-four chance of developing her disease before my 60th birthday. My mother’s chance is one-in-two. We’ve talked about it, and both of us would honestly prefer to die. We want to have some agency, some control, some choice.

Faced with the prospect of this disease, we deserve at least that much.

—————-

Campus Resources: Counseling and Psychiatric Services (CAPS) can be reached at caps.georgetown.edu or (202)-687-6985.

Rebecca is a freshman in the College.

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Rebecca Zaritsky


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