A thousand tiny deaths: My mother, terminal illness, and remembrance in the midst of forgetting

This post originally appeared on my Medium blog in August 2014. 

A few months ago, I went on a cruise with my parents. One day, my mother and I were sitting on deck enjoying the sunshine. My mother began to talk about my grandfather, noting that she thought he might like the cruise, but that she thought he was too old to travel that far from home. I agreed with her, saying that 93 seemed a bit old to be flying across the country. Oh, she said, you know him? I replied in the affirmative: Of course, he’s my grandfather. Well, she said, you and I must be related then. Yes, I answered. I’m your daughter.

This summer, these moments of complete forgetting have gotten worse. Who are you, she asks me, or worse yet, Who am I? There is so much sadness and anxiety in her voice as she asks these questions. It is heartbreaking.

My mother has a progressive brain disease. Sometimes referred to as the visual variant of Alzheimer’s, PCA (Posterior Cortical Atrophy) begins in the visual cortex and then gradually spreads until the patient essentially has the symptoms of dementia. The disease is extremely rare, but it has gathered some attention since author Terry Pratchett publicly discussed his own battle with it.

My mother and father in 2007, in the early stages of her illness.

In my mother’s case, in about 2004 we began noticing that she was having difficulty with tasks like reading and driving (although my sister and I have often wondered if it began long before that and manifested itself in behaviours such as a vehement dislike for driving and general discomfort with any type of travel). A professor, she began to have difficulty recognizing students’ faces. It took years for doctors to finally provide a diagnosis, after ruling out all manner of other causes. Now, ten years later (which, according to some research, is about the average life expectancy from the time of the onset of symptoms, although the doctor who made the diagnosis said that some people live twenty years or more with the illness), my mother is completely blind. The disease has begun to eat away at other parts of her brain as well, affecting her memory, language ability, and spatial sense. There are holes in her brain that can never be repaired.

Because she is both blind and suffering from Alzheimer’s symptoms, there is very little she can “do”; she becomes aggravated by the noise of the TV or radio, conversations are confusing because she does not know who is speaking, and she cannot knit or do crafts like many others who suffer strictly from Alzheimer’s. Even her beloved piano playing now frustrates her after a few minutes. In a sense, of course, these dual ailments are a blessing, as she is unable to turn on the stove or to wander out of the house alone.

With my mother, Summer 2012

The funny thing about this particular disease is that it is so variable and symptoms are so mixed. On some days, my mother can converse with me about my graduate program; on others she has no idea who I am. She often becomes confused or fixated on a particular idea, and then she will repeat it over and over again (‘How are my cats doing?’) until I want to shake her. But I can’t shake her, because she’s my mother and I love her.

At this point, her illness is usually apparent to those around us. In some sense, this is a relief — I no longer feel a need to explain what is going on when she raises her voice inappropriately in public places, when she struggles to get out of a car or taxi, or when she misses her mouth completely as she attempts to eat or drink. In another sense, it is maddening to see the stares that people give her. She’s not a spectacle to be gawked at; she is a human being.

Growing up, my mother was the strongest, proudest woman I had ever met. She was fierce and incredibly intelligent. She landed a tenured position at a university after completing her masters and PhD in only four years, and this at a time when few women were admitted into the world of academia. She served for many years as a department head, and I can only assume that she was a formidable boss. She was not soft around the edges in the way that I sometimes imagined mothers to be, but she was an incredible role model for the strong, smart woman that I hoped one day to become. And this, in a way, makes her illness all the more tragic. Watching this proud woman now unable to feed or dress herself seems unspeakably unjust. It seems unbelievably unfair that a woman who worked so hard her entire life is now unable to truly enjoy retirement. Soon, she will no longer be able to travel at all, which will make things even more difficult for my father, who has an insatiable thirst for exploring.

On vacation in Cartagena, Colombia, Spring 2013

And the grieving process when dealing with a loved-one with dementia is unique unto itself. Instead of a single, tragic event, for which one is often not prepared, I grieve for the thousand tiny deaths of the parts of my mother that will never return, and I am constantly both prepared and unprepared to see them. I remember trying on wedding dresses with my mother. Even five years ago, she couldn’t really see the dresses, so she felt them instead; but although that moment seemed awful at the time, she had only just started losing other abilities. It’s always like that: each time I visit, I think, this is the worst — it can never get any more horrible than this. And I grieve for that new depth of sadness, for the new lists of ways that I am losing her. And then a month, two months later I am back, and it is worse, and again I grieve, and again I think it is the most that I can take. With each thing she can no longer do (dress herself, answer the phone, eat without assistance, climb the stairs alone, remember her address), the grieving process repeats itself, excruciatingly, painfully, like rubbing fresh salt into a partly closed wound. There is something to be said for ripping the bandaid off all at once. The human mind’s ability to perpetually acknowledge and allow greater degrees of sadness is mindblowing at times.

And at the same time, I think: I am lucky, we are all lucky to have those moments of clarity that emerge from time to time, when it is easy to remember my mother as she once was. And in this sense, the gradual progression of the disease is so much better because it allows these tiny moments of respite and relief, times for laughter and happiness amidst the overarching narrative of sadness.

For now, I am left with a collection of bizarre, heartbreakingly beautiful and confusing moments: listening to my mother talk about her beautiful daughter, of whom she is so proud, not knowing that she is in fact talking to me; holding my mother’s hand as we take walks and I describe for her the sights, smells, and sounds around us; lying next to her in bed as, half-conscious, she imparts inexplicable advice and wisdom: ‘Never enter into binding agreements,’ or, more tragically, the declaration that ‘There will be no more cherry trees.’ Wise words, indeed.

My mother, Summer 2014, enjoying the sunshine in a moment of serenity.

Social Networks and the Globalization of Happiness and Grief

This past summer, I wrote about my mother’s battle with a terminal brain illness, which has left her blind and with dementia. After publishing the post, I sent the link to a few family members, but I also shared it on Twitter. Then I headed out for a run to clear my head.

The first person to respond to my tweet was a former student, who thanked me for sharing my story. I remember so clearly seeing the notification, mid-run. My immediate reaction was one of confusion – some part of me had not considered that by sharing my post on Twitter, definitely the most public and professional of social networks for me, everyone would see it; my social contexts, so carefully separated in real life, were collapsed online. I felt vulnerable, but I also felt a sense of comfort and relief.

When I asked my family if it was okay to share what I’d written about my mother, my sister asked me why I wanted to post it online. I wasn’t sure then, and I’m sure not entirely sure now. Sharing online is an odd business, really, one that I’m still trying to wrap my head around. So much has been written about the ways in which social media has changed the way we relate to one another, from the digital dualists who argue that we need to privilege our face to face connections by unplugging, to those, like Nathan Jurgenson, who argue that Facebook is real life – that social media has merely shifted and augmented our relationships. Certainly, social networks have made it possible for us to share wonderful moments with a wide audience (like the recent video of a son who paid off his parents’ mortgage). But they have also shifted the nature of mourning, from private and localized suffering to a new, globalized grief.

Of course, this is not always a positive: our public/publicized mourning has led to hoaxes where people take advantage of human generosity and kindness, and it also backfired recently for Facebook, where the automatically generated “Year in Review” feature brought back painful memories for some users. It has led to the strange phenomenon of grief porn. And it has made it difficult at times for us to move on from traumatic events, as we are constantly reminded of them.

But the sharing of pain and trauma is also (for me, at least), on some level deeply comforting. Research suggests that social networking sites are so satisfying (and at times addictive) because of the endorphins that are released when we post or receive feedback from others in the form of likes, favourites, or comments, so perhaps this plays in role in why we share. And certainly there is something wonderful about receiving words of encouragement and sympathy from complete strangers, who reach out online out of simple human empathy. It is, in a sense, a reassurance of the deep-down, fundamental kindness of people: a reminder that grief is in many ways the great equalizer, a feeling to which we can all relate.

As I write, I watch my terminally-ill mother sleeping on the couch beside me. I am struck by the rapid decline in her functioning even since this summer, when I first shared her story. The moments of clarity come rarely now for her, and this Christmas has been tough for my family. And once again, I am drawn to share this, not only to write about how I am feeling, but to put it out into the world – to feel connected and, perhaps, simply to feel human in the midst of difficulty and pain.