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.
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.
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.
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.
Beautifully articulated, deeply moving. V
Beautiful posting and very well written. My best friend has had PCA a very long time. We belong to a Facebook group that has given us lots of support. It is Posterior Cortical Atrophy awareness run by a woman in the UK. May I share your story on twitter and Pinterest? Thank you
Great to know about the support group. And of course – feel free to share!
Pingback: To my dad, on his 70th birthday | Katia Hildebrandt